Well as sad as I am the time has come to try a wean. I have decided that I am going to post about it here, so check in as I think I am going to have lots of stresses about this.

This will also be a great way to track it in case I do have to have a record for the GI.

Just in summary:

Parker was on zantac since 6 weeks old for 'suspected' reflux. He was officially diagnosed with reflux via testing at 14months, and put on prilosec at 16months, which he has been on for almost a year.

Parker is now 2 years and 4 months, and this will be the last wean and if it isn't successful we are having to have all the testing done again. We are crossing our fingers and praying for a miracle. He is now on 30mg a day split over 3 doses, which is 5ml three times a day.

The plan is to go down a ml at each dose every 3-4 days and see how he does. We are starting on Monday.

OK thanks to everyone who is reading along and I appreciate all of your support.

I am also going to make this a sticky in the meds forum for now.;-)

All right well this is my first official entry, I just had to tell you all about his med that we got today. It is so thin and watery and not at all like the compound we usually get, when I gave it Parker twice today, both times he said yuck, he usually loves it.

So I tasted it and indeed it is yuck, the pharmacy doesn't open until Monday, so I have no idea if it is good or bad, not the best start to this wean if we have no med LOL

good luck parker and even more good luck for you and dan, and also for cooper that his refluxy bro does not strike again

I hope he does well with the wean and you will be able to avoid testing. That is kind of scary about the meds being so different. I hope there is nothing wrong with it. Crossing my fingers for lots of good updates to come.

OK guys we started today! We went down to 4ml 3x a day. Although it is only a drop of 1ml each time, the total drop was 6mg, so time will tell, so far no real bad symptoms, but I am not really expecting any till we drop below 20mg a day, so again time will tell.

Lots of hugs to you and Parker. It likes sitting on glass I'm sure. My prayers for Parker to do great through this!

I'll be reading....good luck Parker!

Rach, Good luck to you on the wean. I'll be reading your updates!!!!!!!!!!!!!!!!

Good luck on this, Parker! You have it in you to become an official GERD graduate and I look forward to seeing you wearing that cap and gown as soon as possible!:hug:

One for Mum, too...:hug:

I hope this works for him, Rachel. Will be checking in.

OK Well today is Tuesday and he has been pretty good so far... YAY! I accidentally forgot his losec at lunch (bad mommy) and I usually would just give it at night, but I thought stuff it, if he is coming off it we may as well do it, so as of today he only had 2 lots of 4ml, which is 16mg a day! Which is pretty much what the GI said to do anyway, so I may just keep him on that for a couple of days, but then I may change my mind.

The only reflux symptoms I saw today, was he clutched his stomach twice saying his stomach hurt, though we did go to the movies today and he had stuff he doesn't usually have.

He was whiny in the movies, but that could have been cause he hasn't been in ages and it was loud, he cried for about 10min going I want my daddy, but again this could ne not related.

And then tonight he has been squirming a bit in bed and has woken once... but again, probably nothing!

I just saw this Rach....


Go Parker :yahoo: Go Parker :yahoo:
He can do it Rach, I have faith.
Lots of positive thoughts coming your way.......... :hug:

Oh Rach
Don't you just HATE this!
"Could be nothing, could be a coincidence..."
and it doesn't help that the compound is different UGH!

Keep going. You can do it! I'm sure Parker will let you know, and either there will come a time when you have no doubt that he needs the meds, or......

What we are all hoping for will happen.
I'll be keeping an eye on this thread with bated breath, and sending Parker )))))))Heart burn free VIBES((((((((

I'm holding your hand through all of this Rachel

Thanks Minnie:hug:, yes I hate the is this, was that. But you are right it will either get or not get to a point where I am sure. I just hope his feeding and wellness doesn't go down the tube because of it...

Good luck for continued success!!!

You take the boys to movies? Maybe we should give that a try....

Becky, we don't usually, the last one we took them to was cars, but they were pretty good! We took them to ice age ages ago and we had to leave cause the kids were getting scared. Why do they have to make kids movies so scary in some parts.

Maybe we will do it again.

good luck i hope that he has a good day today and eeps that way through the wean

will be praying for you guys, hope it all goes well. Keep us posted.

I am waiting with great expectaions for Parker.....How do you feel about going so quickly with the wean? I am really encouraged by Joshus Ped wanting them to go super slow....I think it gives the body more time to adjust with each reduction.
Sending Parker big hugs...and mommy too!:hug:

Well today was just as good, again there were 'maybe's' but I think that they are just coincedences. He woke twice in the night, from 5am, he resettled himself and went back to sleep, but when I went in to get him in the morning, I noticed he had a temp, so I am not sure if he is coming down with anything.

He was a bit clingy today, but I think more because he has a temp and not because of reflux.

It is weird, he is having less reflux symptoms than he was having on the full strenght...weird!

So tomorrow I should know if he is sick or not, and we can go from there.

Debbie, ideally we should have done a slower wean, but I didn't want to do it over Christmas, and we have the GI in 2 weeks, and we have to be off it fully by then, so I thought, why wait. So when I missed the dose yesterday I saw it as a sign.

Well it is so weird, but he is still being really good. I haven't seen any definate signs of reflux, he hasn't complained of being sore or sick, and no hiccups or swallowing it down.

What the weird thing is he had MORE reflux symptoms on the meds last week. He is still on quite a high dose but this is exciting.

The only downers we have had that may indicate reflux, he has had a weird temp that goes high and then goes down and has diareha for 2 days, but I don't think he is sick, he doesn't seem sick, but it weird. The other is that he has spit up in his cot, its only small patches, but we haven't had this in ages, so hopefully it is nothing.

So so far so good!

:yahoo: :party21: :party0049: :smt041

GO PARKER!!!!!!

:smt041 I am so happy to hear it, Rach. I hope his temp and a few spit ups here and there are nothing. Keep bringing the good news!

So far so good Rach!:smt041

How's his eating/drinking?

Well he is still drinking, but has stopped eating, but I am not so sure that is reflux related, as he is a bit unwell, so again time will tell. Do you guys know how impatient I am, this is killing me.

Just s quick update though, he is sleeping still, but woke this morning extra crabby and is screaming and being a bit violent to poor Cooper, but again may be illness.

If I ask if his tummy is sore, he says no.

UGH... Rach, I am the same as you. It's so frustrating, and you just want him to say "yes, it's bothering me" or "no, I'm fine"

I have faith. Keeping my fingers crossed for you. :hug:

Thanks Em, I should note that we have had 4 days of half meds.

Things sound good Rachel
Even now...8 weeks out, I'm confused
I almost wish Zach was either doing GREAT or horribly so i knew the right thing to do
Zach has been sleeping great and this afternoon hasn't stopped asking for and eating food...ughhhhh
I'm still convinced there is a connection to what zach eats and his reflux flaring, not eating...you might want to keep a food diary for parker (just in case his reflux flares, you will be aware of something he ate/drink might have contributed to it?)

GOOD LUCK

Sorry I just saw this. Good luck Parker. I hope the wean is going well and continues to do so.:hug:

Great to hear things are going well Rachel, it sounds like thinks are so far so good :) :)

Yes so far so good, though this morning he told me that there was something in his mouth and started licking me....WTH?

Like you Kim, I wish it was cut and dried one or the other. I was just saying to Dan that I will feel bad if he doesn't have reflux, NOT because I don't want him to, cause then I will start thinking well how long was he on meds and didn't need them, though I do know at least two months ago, we tried a mini wean and it wasn't successful....your mind never stops ticking over does it.

Kim I think a food diary is a great idea, so I may start that soon.

Thanks evreyone for your support, you don't have to reply all the time I am just using this as my sounding board and a timeline for anyone else going through this.

Though it does mean a lot that you are all here for me!

Yes so far so good, though this morning he told me that there was something in his mouth and started licking me....WTH?

Like you Kim, I wish it was cut and dried one or the other. I was just saying to Dan that I will feel bad if he doesn't have reflux, NOT because I don't want him to, cause then I will start thinking well how long was he on meds and didn't need them, though I do know at least two months ago, we tried a mini wean and it wasn't successful....your mind never stops ticking over does it.

Kim I think a food diary is a great idea, so I may start that soon.

Thanks evreyone for your support, you don't have to reply all the time I am just using this as my sounding board and a timeline for anyone else going through this.

Though it does mean a lot that you are all here for me!


:rolling: I'm sorry but I am peeing my pants laughing at him licking you. And then your comment, "WTH" lol.. osrry, it struck me funny.

I had to get back on, cause I was laughing so much from your comment that someone in the office said what are you laughing at LOL

Yeah I suppose it is a bit weird!

Sounds great so far....I'm so glad, don't think about what ifs Rachel....you have done a great job!!!....don't you dare bully yourself over what ifs.....:hug:

OK Well I thought it time to update again, it has been 5 full days at half dose (lets forget the first day of only a little reduction)

I am so baffled, he seems to be doing really well, BUT he has some weird and strange things going on that I can't explain. Like the temp, every day, at least once a day, he has spiked a temp, not high, high, but enough to think he is gettng sick and then he is fine about 30min later...do you think this is because of the med coming out of his system?

He isn't sleeping as great, he is tossing and turning and waking at 5am. And when he does he is so thirty that he sucks back water or milk, which he used to do a lot with reflux, but he has had a temp, so maybe he is just thirsty. He has been a bit irritable, but again that could be Parker and if he has a temp he may be sick and it would explain that also.

But this is a kid who can tell me he feels sick, or his tummy is sore and he has said nothing since the licking incedent.

I don't know what I was expecting, I suppose a lot of crying, burping, swallowing, screaming, coughing, congestion...but none of that...yet!!

I am going to ring the GI on Monday to see if she still wants me to go ahead with this and see what she says.

Hmmm.. he is a mystery Rach.
The fever, I don't know. The thirst, I would say reflux, but shoot, I don't know.

But, I'm like you, I look for disturbed sleep, the coughing, gagging, burping, hiccups.
So, YAHOOO! :yahoo: He is doing good! How is his eating?

I had to get back on, cause I was laughing so much from your comment that someone in the office said what are you laughing at LOL

Yeah I suppose it is a bit weird!


I don't know why but I'm laughing again over the licking. :rolling:
I guess because I watched a show the other night and there was a frenchman on there and he asked this woman if she wanted him to lick her face. This was a reality show. You had to see it, it was hilarious. Sorry, my weirdo sense of humor. :evil4:

I don't know what I was expecting, I suppose a lot of crying, burping, swallowing, screaming, coughing, congestion...but none of that...yet!!


Unfortunately you may not see these things until he's off the meds completely for a while, until then it's a guessing game.

Eric has never gotten feverish coming off meds. However, his behavior changes, and so does his sleep, but even when we cold turkeyed it for testing you couldn't really tell until at least 5 days off his med, and even after 2 weeks off his meds, everything that was happening could have been blamed on something else KWIM? It still wasn't obvious, it's just I knew what to look for, and knew he felt better just a few weeks prior on his med. So just by comparison I knew.
When he came off the zantac I saw no difference at all. To me this meant he didn't need meds anymore, but.... In actuality the zantac just wasn't cutting it and hadn't been for quite some time...sigh...

It could be that he's coming down with something Rach. I really hope so (((Big Hug)))


Just remember, worst case scenario: He's off meds for a while and starts getting sick from reflux again, no matter how well the wean went. You'll know what to do to help him Rach. You'll know before really bad things start to happen. You'll know before any major damage is done.
Eric was off meds completely for over three months before I opened my eyes, and saw what was really happening, and in just 2 short weeks he felt 100% better and everything got back on track.

So hang in there

i hope he continues to do well i am sure time willl tell the temp could be as the meds get out of his system i hope so

I am having a really crappy day so far and it is only 7am, and I just posted and lost it, so I will try it again...

Well I am pretty sure that this isn't doing so well now, either he is going to come down with something in the next couple of days or this wean isn't going so well.

The screaming and fussing has started, his tummy is hot and he is complaining that it hurts, he is clingy and whiny. I am ringing the GI today to schedule the probe, to see what is going on, so this means that we have to go off the meds completely, which I am not looking forward too, these reactions are on half the dose, which mind you is generally what most kids are on full time, so I suppose it shows that the dose was right.

Even if it isn't reflux, we have been thinking of having the probe re done anyway to make sure that it is better.

SO wish us luck for the next week argh!

and Minnie, it is good to know that if we go back on the meds then it will only take a little while until he is back to normal *crossing fingers*

Oh Rach,
I'm so sorry :(
Hope that probe gets scheduled quickly, and you will be able to get him well again soon.
Everything will be O.K. We have to do it Rach. We HAVE to keep trying. You didn't do anything wrong. This wasn't a mistake.
Sometimes things like this help them, and help get more pieces to the puzzle placed in the right spot.

(((BIG HUG)))

oh rach i am so sorry to here it isnt going well i know how badly you wanted it to work, they should be able to get you in or the ph probe pretty soon. they now have a new machine at pmh for it now ithey are doing empedence studies rather than just ph and aparently it more accurate so they will be able to pick up all the reflux not just acidic so hopefullt they do that one

good luck i hope today gets better

they now have a new machine at pmh for it now ithey are doing empedence studies rather than just ph and aparently it more accurate so they will be able to pick up all the reflux not just acidic so hopefullt they do that one


That's really interesting. Can I have more info on that?

:hug:

oh rach i am so sorry to here it isnt going well i know how badly you wanted it to work, they should be able to get you in or the ph probe pretty soon. they now have a new machine at pmh for it now ithey are doing empedence studies rather than just ph and aparently it more accurate so they will be able to pick up all the reflux not just acidic so hopefullt they do that one

good luck i hope today gets better

THANK YOU!!! I will ask today, I will ring Dr M today, we have an appt next Monday so we can hopefully get it placed then, he has to be off the meds totally for a week, not good.

aparently for the empedence thay can stay on meds that the best thing about it

but i supose of you are trying to ween best to be of them

Well officially this kid is doing my head in, I went to work today, he was screaming and squirming his tummy was red hot to touch, and calling mummy don't go when I left. I rang about 2 hours later and he had fallen asleep on the couch. She said she would call if he woke bad.

So he woke PERFECT not a problem in the world, he just went down to bed for the night and has been a happy normal playing child. I tell ya, if I ever work this child out, I am throwing a party or something LOL

So we are still waiting for the GI to call, so hopefully the pH test will be next week still, at least either way we will get some answers.

So we are either on the reflux rollercoaster right now, or he is definately playing with me. After a week and a half of night squirming, I went to bed early last night, cause I thought for sure he would be up, NO he slept till 7am OMG! We haven't had a 7 sleep in for ages. He woke up happy and has been good, he is now sitting on the couch munching on some toast and doing a good job at it too. So weird.

This morning i have seen some reflux signs, coughing and the swallowing back down, but it doesn't seem to be bothering him.

I am sure if I go and re read this, I will find that I go from he is really bad to he doesn't have reflux really quick, but I am hoping maybe he was just having a bad spell for some reason, well time will tell I suppose. I really wanted to write down as much of the different feelings you go through with this, for other people attempting it.

At the moment it looks like we are back on track.

Hey Rachel

We are in the SAME boat..one minute I am convinced he needs a PPI and is having reflux symptoms and the next he is an eating monster/angel
I really think it might be related to what he eats (which would be a problem regardless of meds)
I'm still on the fence, so I have him on a pretty strict diet and am watching his reactions/behaviors
I'm still clueless
Let us know how things go
I would say when we took Zach off prevacid I didn't see any unusual symptoms for at least 4 weeks....so it's scary how things can change at anytime
i was told the meds would be out of his system by a week

I think you are right about the food, Parker had his toast and is now being quite aggressive to Cooper.

You know what I think it is as well, when they are little we all know the reflux symptoms, even now we can hear some and go oh that is reflux. But we don't have many 2 or 3 year olds with reflux still, so I think the symptoms are different as they get older and we just don't know what those are yet KWIM? Like they don't scream all day but they do something else just as bad, but maybe not as noticeable if that makes sense.

I'm glad to hear that things are still on.
And I think your right about older babies being harder to read.
They have tempers, imaginations, quirks, etc etc
So many emotions and changes every day.... It's impossible!
You don't know how many times I have begged Eric to be more obvious. "Either be miserable or be healthy kid, so I know what to do!" When he was an infant he was very clear about how he felt. Not that I wish I could go back!!!

Rachel

I have just read through this whole thing and I am wondering if Parker didn't/doesn't have a bug. Almost all of the symptoms you listed sounded like maybe a stomach bug (aside from the licking LOL!). I can't see why he would develop a temp from going off a med. Definitely something to ask the dr. I suppose.

I hope it was just a bug and that it's not reflux rearing it's head. Like you said, there are not many 2 or 3 year olds still suffering from reflux and I hope Parker is one that is not!

Rachel

I have just read through this whole thing and I am wondering if Parker didn't/doesn't have a bug. Almost all of the symptoms you listed sounded like maybe a stomach bug (aside from the licking LOL!). I can't see why he would develop a temp from going off a med. Definitely something to ask the dr. I suppose.

I hope it was just a bug and that it's not reflux rearing it's head. Like you said, there are not many 2 or 3 year olds still suffering from reflux and I hope Parker is one that is not!


Let's not start in with the licking again, that makes me laugh every time. :rolling:

I'm glad that he slept well last night. :smt041

So true Minnie about the quirks, and parker is pretty out there, so it is even harder. Wheras Cooper, I can generally tell when he isn't well before he gets sick, cause it is so out of character.

Steph, I am hoping it was a bug too, and in hindsight there could have been a couple of other things that could have caused the tummy upset. One was I couldn't get my usual supplement so I got pedisure and that was when he got the diareha. It stopped being that bad when I stopped that, also we started some new homeopathic treatments, and I have stopped them and he has been better since stopping them, so it could have been those two things contributing as well.

OK well today was getting worse, although not crotchety a lot, he doubled over in pain at least 10 times going ow, ow and holding his tummy tight. Still doesn't mean that it is reflux in my book, so still wait and see. The good news is that we are now scheduled for the probe on Tuesday next week, we have to be off the omeprazole for 7 days before getting it done. so that works nicely, by then I think I will be sure that something is up if this keeps going.

I just want to add, that if I ask if he is sore now, he generally doesn't answer me, like he is shy or something, he was getting good at telling me when things were sore, and sick and now nothing LOL

Oh and something funny today, I have been telling Cooper today that Parker isn't feeling well so he shouldn't be rough with him, so I was in my room tonight and Dan had just got them out of the bath and Park is screaming at Cooper, leave me I am sick, I am sick....I don't think it was cause he was sick (though who knows LOL) but just how quick they pick things up and use it. :rolling:

OK well signs are starting to show now, he woke early screaming, he has been gagging and hiccupping, and gulping, he has also been very aggressive, and he told me he has something in his mouth, before licking me again....I added that one in for Em.

I don't know if I will even be able to let him play while I IRD its getting to be a constant whine cuddle, yell, cuddle (ignore) cuddle Cooper for Parker him hurting him......

I was really hope this was not going to be his outcome....can he show you with 1 finger where his tummy hurts...it may give you a better indication of his pain

DARN Reflux! :(
I hate it!!!!
(((BIG HUG))) for Parker, wether he wants it or not

Again with the licking? :rolling: I'm sorry.

Ugh.. poor Parker. I'm sorry Rach... this SUCKS.

Well another couple of days and I am still confused. He doesn't seem to be having a lot of typical reflux symptoms all day every day kind of thing, he is waking in the morning screaming, but he settles when he sees us, he has settled on the gulping and coughing, though he is being so aggressive, Cooper runs away from him, he gets fired up really easy.

Dan said last night, that if we get the test back and it is normal, that we need to get someone in to address the behaviour- for Dan to say that, it has gotten pretty bad. But I am willing to let it go a week or two to be sure, and start disciplining him once I am sure.

I am still so very confused with it all, nothing at all like our last complete wean, and that was a year ago, and the partial weans in between haven't lasted more than 3 days, before we have known.

Debbie I tried the one finger to point where it hurts and he points to his knee and his tummy, though now I don't beleive it fully cause it has been planted in his head, though yesterday he told me his tummy was 'yukky'

So I think the question is, how many times a day will they complain about something, for it to still be classified reflux still. Parkers last probe showed about 180 episodes, which to me sounds huge, I don't think I am seeing that many hics, etc....but I remember when he had it done thinking that it was one of his best days ever when it was in, and it still showed reflux...sorry still getting my head around it.

and last thing, it is so weird to not have to medicate a child, I am kinda liking it, I always am thinking have we given the meds yet, and its like we don't have to anymore, this I could like, he has had meds every day of his life (well since about 4 weeks) , and he has now had 2 days where he has had nothing at all, not one thing.

I am pulling my hair out for you. If they could just tell us. And like you said, now he has it kind of planted in his head.

Is he eating? Have I asked you this yet? ROFL... my mind is gone today. I have three kids screaming as I am trying to type. I am going to the loony bin for SURE.

((hug)) :hug: I wonder if by yukky he means naseous? It's so hard when they can't really express it. Does he say if his throat hurts? UGH..... :sad5:

poor cooper geting atacked by parker

that godd that you have not had to give meds for 2 days

after the probe you will know one way ir the other and that will make t easier to know what going on

looks like if there is no reflux dan will be runing a boot camp at your house maybe i should send him miki as wel:haha:

Amy I think you are onto something a boot camp for recovered refluxers, I think we would make a mint!!! Too funny.

And Em, he has stopped eating, but he goes through stages anyway, I am not to concerned just yet, but he has lost 200g since we started, not I have to google it don't I? He is still eating some things though, he has been whining all day for m and m's, and its 8am so NO, but we don't have any anyway, he just gets so set.

OK 200g is 7 oz lost, so not bad, but if it keeps up, I will start up pushing the feeding again.

OK 200g is 7 oz lost, so not bad, but if it keeps up, I will start up pushing the feeding again.


thanks for googling. LOL....
you don't have any of the rainbow m & m's left that you had while we were in Cleveland? :rolling:

Hey Rachel

Sorry to hear you are still getting mixed signs
It's odd about the licking thing, because Zach does this when he isn't feeling well...i wonder if he tastes acid/sour and is trying to get it off his tongue?
Zach has been getting a little aggressive as well...his teacher today though said he was an angel...very happy etc...
Huh?
he's been off his prevacid for so long now (almost 2 mnths)
I'm not sure what is age, pain....something is fishy
Keep us posted

OK well it has now been 5 full days off the med and I am just as confused as I have been all week! So we are hoping and praying that it is all over for us, though I think he is suffering in silence (unusual for him) but then again, I will be very happy with an improvement in symptoms too.

Dan and I have decided if we are going to give this a go, then we are going to stop supplementing his milk, and not worry about what he eats, we will offer it, but not obsess with how much he is getting, we have also taken the yellow pages, which were propping the cot, out. We are also allowing normal no go foods, except straight cows milk. IF we are going to do this we are going to do it properly, so there are no what ifs later on.

He has been sleeping very light lately, and getting up super early and whiny though he soon perks up, I do wonder if his apnea is back if he is refluxing at night, we haven't had this type of grumpy wake up in ages. He has become quite aggressive to Cooper, so much so that Cooper is saying he is scared of him, Dan and I feel that at this stage we will try and keep it under control until we know and then we will discipline once we do know for sure, it may sound like an easy way out, but it is only a couple more days, and then we will know one way or another.

Cooper has also been needing some extra hugs and cuddles, I think he is feeling a bit neglected as Parker is taking a lot of time and being a bit sooky. So we have been spending Parks nap time doing stuff together which has been great.

Finally I talked to the GI assistant today who talked to the GI and said that after the test we are to put him back on the losec and wait until we get the results and then we will discuss it. I have mixed feelings about this, one what if he doesn't need it and we have to go through this again, but I am also thinking I could log or look at his behaviour and see how he does being back on it and see if it does make things better, I don't know, i think I will wait till the test, 7 days to get the med out of his system so it may still be giving him some protection so you never know.....starting to worry about him pulling the probe out all night!

Rachel,
it's almost spooky how alike Eric and Parker are. I feel like I could have typed this whole thread you started (minus the weird fever thing).
Does Parker run into things and hurt himself on purpose?
Bang his head and hit himself?
Does he lean up against the furniture and lean his head way back making weird baby seal noises, and fake (evil sounding) laughs?
Just wondering if we have these things in common too.
At least this is what Eric did while off meds.

It's also spooky how much you and I think alike. The ALL or nothing approach. No propping, not worrying about foods, etc. That's so me! ;)

PH probe:
The "no nos" (the arm stiffener thingys) worked really well at night.
There's also a way to rig them so they can't put their arms together and have to keep them out to their sides. Do you have those?
I don't know what I would have done without them at night. Eric was O.K. during the day, but OH MAN did he ever want it out at night.

Tell me about the probe. I know nothing.
Do they insert it, send him home and then you go back? I mean, is it a camera? I am confused.

Second.... UGH... no wonder you are having a hard time getting your head around this. I am just reading it, you know? And I agree, why go back on the med. after the test if, just do wean all over again. argh....:hissyfit:

I'm sorry Rach. :(

well at least you are on top of the situation...you have control right now..i hope your right and anything that seems like a symptom is a coincidence

Minnie, I have always said that Parker and Eric were reflux twins, though some variations now! But he doesn't bang his head, but he will hit, in a kind of evil way, and he will bash into things, but he has no fear, and also a real high pain threshold, it doesn't matter to him. No seal noises either, but he has been whining and doing the high pitch squeal a lot lately that it is doing my head in.

Yep all or nothing, if he was doing worse with it, I would probably be more cautious, but if he doesn't have reflux and he doesn't still have feeding problems, why not put all our cards on the table and see how he does.

I am worried about the night also, I don't think we have the arm bands, I didn't have any last time and what they did was wrap his hands like boxers mitts, but I have seen the arm straighteners and thought that would be a muh better idea, I will see how he does, but I may even sleep in his room on the night to make sure everything stays in place.

Em, the pH probe is a thin tube with a little probe on the end and it detects pH, they place the tube through his nose, so that the probe sits in his esophegous, the tube gets stuck to his face and on the end is a little receiver that records pH over the 24 hour period, then then download this and can work out if there is a lot or a little reflux, thats as long as he keeps it in!

LOL Debbie I change my mind about things every day, I do know that the test is best now, to see one way or another, I can compare it with the last one, and we can go from there.

I have tried to be as real about everything I write, I am sure someone who reads this from the start probably thinks she doesn't know what she is doing, but thats how I feel sometimes, and that is the whole reflux problem. But I am sure we are on the right track now for some answers!

Don't second guess yourself.....:hug: I have never in my life seen someone so "on top" of things as you. And I mean that from the heart.
Reflux just boggles you... it makes you second guess everything that you know. :violent1:

So, he will go home with the probe? And then go back and have it taken out and then it will take a while before you have the results.... :sad5:
Again... I wish that there was something I could do... :censored: REFLUX.

So, he will go home with the probe? And then go back and have it taken out and then it will take a while before you have the results.... :sad5:
Again... I wish that there was something I could do... :censored: REFLUX.


Yes he goes home with the probe (though it really is just looks like a feeding tube, I will take a pic for you) and then we go into the hospital to get it out the next day, getting it out is pretty easy, last time it was a week for the results, we go in and she says oh I had to send it back, but it showed reflux, it was probably a couple of months until I learn't what his results were.

So hopefully a couple of weeks.
Thanks Em :hug:

A couple of months????? What?!!! I hope he does well for you, and pray for no reflux!!!!

I could be pleasantly surprised and get them sooner.

Its so weird, I actually think he is getting better as it is getting out of his system, Crossing fingers for this.

We tried a slight wean about 2 months ago and we didn't even do well dropping the 10mg now we have droped 30 it is so weird.

The attitude is still there, but we are thinking if he has got away with so much in his life he is sure to have an attitude. I am starting to think that maybe the homeopathics started to work, the ones we started in December I noticed an improvement with his twitching, but that could have been co incedence, but that was the first remedy to work or do anything noticeable in 6months.

What is the homeopathic treatment you are using..and are you using anything for reflux or just for his leg twitching? I think you could be right about him getting better as the meds leave his system...I read some other posts that the moms said the same thing...man I hope thats the case for Parker:hug:

Debbie we have tried heaps, we go to a homeopath, who changes them every month, she mainly has been treating the reflux, but she adds in different combos and could be treating lots of things at once. They treat specific events in their life prior to the reflux starting, so we started off with a remedy to treat the drugs used in birth, we have also done a hep B detox, which helps the body adjust to that.

I really, don't know what to expect here, but she is very good, and been doing it for years, she treated Coopers ears and they have been great, and we also have cold and flu remedies and you give that before they get bad sick and I swear the symptoms are less, I have done that one so I can vouch for it.

It is weird, she will talk to you for an hour and ask all the questions that I feel that a Dr should ask, I do recommend a practising homeopath for reflux and not OTC homeopathy, and someone who has been doing it a while-thats the weird thing also, she is so sure that it is going to work eventually surely she has had 1000's of patients, and she wouldn't be so confident if she didn't see results.

The remedy she last gave was the cina, it is used of things of the tummy and twitches, and I have seen an improvement there, but it could also be a case of coincedence. But if I have a reflux baby again, I will be taking it to her straight away thats for sure.

if I have a reflux baby again, I will be taking it to her straight away thats for sure.

UMMMMMMM!
what's this? A mention of possibly having another baby?!
oooooooohhhhhhh

ROFL we had planned to have another one by now and be finished LOL, but Parker put a spanner in those works, so you never know...we will see.

Aw the boys need a little sister......
Thanks Rach....Thats what I thought but just asking to be sure....have you ever used one prior to this?

ROFL we had planned to have another one by now and be finished LOL, but Parker put a spanner in those works, so you never know...we will see.


Yes! Yes! Another!!!! :smt041 :smt041 :smt041 :smt041 LOL... :evil4:

ROFL Em, well we can't do anything about it until at least March/April I am having an overseas guest over who I am going to paint the town with, and I do NOT want to be skipper (or designated driver LOL)

Debbie, we hadn't been to a homeopath before this, only OTC homeopath remedies, which like I have said, go nowhere near what this woman can prescribe, she has over 3000 remedies, she said it is just finding the right one. Oh well we have to try these things.

The best thing about it, is she has never made me feel bad about him being on meds, and has never told me to stop the losec or anything else he has been on, which for natural medicine I think is great.

ROFL Em, well we can't do anything about it until at least March/April I am having an overseas guest over who I am going to paint the town with, and I do NOT want to be skipper (or designated driver LOL)

Debbie, we hadn't been to a homeopath before this, only OTC homeopath remedies, which like I have said, go nowhere near what this woman can prescribe, she has over 3000 remedies, she said it is just finding the right one. Oh well we have to try these things.

The best thing about it, is she has never made me feel bad about him being on meds, and has never told me to stop the losec or anything else he has been on, which for natural medicine I think is great.


:rolling: that's right. Me either.

OK we got the probe today, it actually wasn't as bad as I had thought (or the nurse told me it would be) I don't know I have been through some tough ones. Anyway at first he was quite upset, and kept saying that he wanted the tube out and he would do a little cry, but after a couple of hours he was fine. We have his hands taped, in boxers mitts, and he doesn't seemed too fussed now.

He is staying up extra late, its 10pm and he is watching Nemo, but hopefully he will sleep well.

We got the impedence probe after all that so it is a bit different than before there is a lead to his back and the probe down his nose, it also has the pH right there and so far nothing too dramatic, I am not getting my hopes up but it is looking good.

I am definately glad now that I went through with it, he is still having weird symptoms, mainly a raspy phlegmy chest/throat, but a lot less swallowing and coughing, not complaining of being sore anymore...so we will see.

Here are some pics- with the probe
http://i32.photobucket.com/albums/d34/cooperandparker/Picturebed002.jpg

The recorder in his backpack
http://i32.photobucket.com/albums/d34/cooperandparker/Picturebed003.jpg

I am so glad that everything went smoothly.

He is such a little doll. :rolleyes:
So, you can see what is going on? That is good...and helps with the waiting I'm sure.

*whew* glad that is over, huh? And taking it out? Is that a big deal?

Nope no biggie to take it out, it took about 3 seconds last time. And yes I am glad that it is over. The funniest thing was Amy has to wait till I take the recorder as apparently there is only one, so she will have it tomorrow night for Miki....weird huh?

That is strange.... LOL...
I'm glad that he is doing well. And no "refluxing" no major ones anyone. :party0049:

Bless his heart Rach, he is just too cute! I hope that the probe shows nothing bad and that it will be all clear to be med free!!! YAY!! I LOVE his hair, what a looker!!..want to set up an arranged marriage!?!?! :smt036

Hi Rachel

I'm so happy to hear it wasn't too tough on parker
I would LOVE to have Zach go through a PH...but the GI scared the crud out of me
How long has Parker been off meds...2 weeks?
The ONLy thing that concerns me, and don't hate me for bringing it up
BUT when I took Zach off prevacid he was an ANGEL for a good 3-4 weeks, only recently did he start showing signs of reflux
I know the GI said the meds should be out of his system within a week, but I don't know
It could be something else....that's why i am still clueless!!
Glad to hear all looks good so far.,...fingers crossed and keep us updated!!

he is so cute, such sweet little face;)

hope the probe doesn't show anything and you can keep with weaning him off meds!
:hug:

Oh Rachel....what a sweet heart..showing us his new mittens...little babe....I hope there is no acids readings:hug:

LOL Nic on the arranged marriage, you wouldn't want him for a SIL, he is the cheekiest kid totally.

Kim, I am glad that, and I was saying the exact same thing to Dan last night, I hope it has been long enough, he has been totally dependent on meds since 6 weeks, except for a few disaster weans, we were having reflux problems in Oct/Nov it is the only fly in the ointment that it could be GONE, but then maybe I am trying not to get the hopes up.

I don't know, it will be something to ask the GI, it has only been 1 full week of meds, we were on half dose the first week.

He had a really good day, I wanted to just look at the recorder all day but it wasn't practical LOL, it was only acidic a few times which I think that is normal to have a few. In the night his sleep was off, I slept in his room, and cause his hands were mitted he would say, mummy put my dummy in, I think he was starting to get used to it LOL

I will let you all know when I get the results, though for now, we have decided to not go back on any meds decide when the results come in.

Go Parker.... :party0049: You can do it. ;)

Rach!
Time for an update!
Hows Parker doing? Still off meds?

Update Update...Hope all is well!!

good luck i hope the rusults come back no reflux

Rach, Bless his little heart! I'm so glad to hear that he did well with the probe! I bet you are so glad to have it over with! I hope the results come back with and are great! I'll be looking for an update:D

Thank you everyone for thinking about us guys, it means so much to have people supporting us through this.

Well so far seems fine, I am so bewildered with this whole thing, 2 months ago he was so bad we had to up his medicine, and now he is so much better. I still beleive he is sufferring reflux, but I definately think it has improved A LOT! :yahoo: I hear him a couple of times a day, he is choking on a little water, and being a little fussy, but nothing I would be overly stressed about the one thing that I have noticed is the sleeping, it is getting worse and worse and this isn't just an attention thing, he is screaming at the top of his lungs in the middle of the night- I went in the other night and he was trembling, and shaking he was so scared, he told me there were monsters, so I am hoping that is all it is.

Though tonight he wouldn't sleep and was screaming, so I gave him some mylanta to try and he was out 5 mins later, so again confused. Either way, I am not getting disheartened, this is so much better than anything previous, and I am starting to think that life could get some normalcy back.

I still haven't received the results, though I did call today and the secretary said that the Dr will call if she needs to talk about it, or the secretary will ring and get an appointment, and if not I will get a letter in the mail. I am thinking if I haven't heard from her by tomorrow, then the letter will be coming which is a good thing, as it means no follow up, but also bad as we don't get to discuss everything KWIM?

But she is really busy and the only GI in Perth, so you take what you can get I suppose.

So the plan now is to wait and see, we are still not supplementing anything, we are offerring him all the food but if he doesn't eat it then we are not stressing him or us, we can then see if he can hold his own or not!

So that is about it, I will let you know if he gets any better or worse and when we get the test results in...this was a long update wasn't it.

Thanks girls!

Hey Rachel

Glad to hear all is going well
If he continues to do well during the day but ONLY has problems at night..maybe he'll just need mylanta or pepcid/zantac before bed
Fingers crossed everything continues to go well!
I was also afraid to wean zach...it had been 9 mnths though since the last wean but it was a disaster...

:banghead: why didn't I think of that LOL, I will see how he does and may give that a whirl!

Hey

That's what friends on IRD are for...LOL

Oh Rach that's good good news. I hope he continues to do well.
This is all very exciting!

That is such good news Rach!!!!! :party21: :party21: :party21: :party21:

But, the trembling at night broke my heart. :sad5: Maybe he is getting into the "nightmare" stage? I don't know at what age that starts. Poor thing.
I KWYM about not discussing, maybe she will make an appt. just for you to go in and talk with her... even if the results were good.

Keep it up Parker!!!! :yahoo:

Rach,
Just curious.
What was Parker's probe like at night last time?
Was it more active at night than during the day?

Minnie last time the probe showed minimal reflux at night, I think there was like 10 or something, but they were always nothing and then a huge long spike, and reflux for a couple of minutes, I would say that it used to be enough to cause his bad sleeping and his waking from no where screaming. He was really good last night once he settled for the night!

Wow too cool Rach!
I'm excited for you. I really hope things keep going the way they are.

Well probably time for an update, we are having a day from hell LOL and I have no idea if it is reflux or just being a pain, we called the GI today, as I know that she had the results back yesterday at least, if she didn't have them before. The girl who does the probe readings/downloads, was on holidays I found out through Amy and so at least they are done now.

I am really wavering as to whether we put him back on zantac and see if some of his agression decreases, the main thing he is doing is the whining, hitting, yelling, being cheeky, which could also mean normal two year old behaviour, but I have no idea, we are hopefully hearing back today about the results, the secretary said she will get her to call today if she can, so that is something, I will let you all know what we decide.

But before I go, what do you think? Keep with it, or try the zantac and see if he starts being better?

**I just edited to add, that when he is crying with the whining, he looks a mess, like generally when he used to cry they would be crocodile tears, in the same situation, but now he really cries, his eyes go red, his nose runs, and he 'looks' refluxy/uncomfortable...maybe I just answered something, maybe he is coming down with something...***

:sad5:

Rach, I'm sorry. It's so hard to know what is normal "2 year old behavior" and what is him being angry and hurting.
Hmmm...if it were me, I think I would "try" the Zantac and see if he does calm down. I suppose then you would have your answer.
Poor baby. :hug:

LMAO! No I'm not laughing at you, it's just LOL
Well...... you know!!! One of those "great minds think alike" moments,
only I was thinking pepcid! LOL

Rach,
You COULD try it, but if he does do well after taking it then you'll be thinking "Is this a fluke thing?" and then you have to try without to see if the "iffy" behavior returns. Then you also have those times where it could have been because the meds wore off that he isn't doing well, or maybe the zantac gave him a head ache, or upset his tummy a little. Do you see what I'm getting at?

Now with all that said, if we have another night like last night, I'm reaching for the pepcid! URGH!

One of those moments that makes you think that valium should be prescribed to the Mother the very instant their child is diagnosed with reflux.

Yeah a valium seems a good idea right about now.

See Parkers sleep is now OK Minnie, so everything has worked in cycles KWIM? And you are are so right about the is it the zantac etc.... I think at the end of the day, if we can get out of this off a PPI I will be happy, its safe been around a while, approved, I think I can talk the Dr into letting him have that for ages, and did I mention the excitement of not having to refrigerate a med, and get it made up?

I think I will put him on the cold homeopathy drops to see if he does have a cold to stop it before it starts.

Yeah a valium seems a good idea right about now.

See Parkers sleep is now OK Minnie, so everything has worked in cycles KWIM? And you are are so right about the is it the zantac etc.... I think at the end of the day, if we can get out of this off a PPI I will be happy, its safe been around a while, approved, I think I can talk the Dr into letting him have that for ages, and did I mention the excitement of not having to refrigerate a med, and get it made up?

I think I will put him on the cold homeopathy drops to see if he does have a cold to stop it before it starts.


http://smileys.smileycentral.com/cat/36/36_1_6.gif (http://www.smileycentral.com/?partner=ZSzeb001_ZNxmk895JHUS)
ah ah ahhhhh.... NO VALIUM. *rofl* :evil4:




http://www.smileycentral.com/sig.jsp?pc=ZSzeb095&pp=ZNxmk895JHUS (http://smiley.smileycentral.com/download/index.jhtml?partner=ZSzeb095_ZNxmk895JHUS&utm_id=7923)

Well Parker was a total animal today, I can't even begin to describe how bad he was, I ended up a mess by the end of the day praying for Daniel to come home, I haven't been that messes up for a long time, bought back some great memories.

I still don't know what to think, reflux or not, he went for a nap today and woke twice crying but he didn't want to get out of the cot, the second time I went in and gave him mylanta and he went back to sleep and woke happy, I really think he may be coming down with something.

The good news is that I heard back finally from the GI and Parkers pH probe showed minimal reflux only 20 episodes in the 24 hours, which is pretty much what I expected. So he is definately on the mend. She wants me to stay off meds another month and see how he is, if he is still as bad she wants to re do the probe but at this stage I think that would be a waste.

So now the test that was going to end it all, pretty much did, but I am now still as confused as ever. I posted more about my day here.
http://www.infantrefluxdisease.com/forums/showthread.php?p=261075#post261075

Thanks guys for being here for me :hug:

Hey Rachel

How are things...any better??

Well not what you were hoping for, but not as bad as it has been...does that make it any better? So what do you do for the next month..keep him settled wth Mylanta..and wait to see if he gets better? I wish it was easier for him...jsut gone would have been great, sorry it's not Rachel:hug:

Well Kim he is still playing mind games he has been resonable good lately, Tuesday was a hell day, and then he is good again. I do wonder if possibly he is reacting to getting the meds out of his system or something.

I have been thinking, milk takes like 3 months to get out of their system, in adults drugs like valium can stay in the system for 3 months sometimes longer. So maybe it is something that in time he will just have more and more good days? No idea, still hopeful at this point though.

We have been using the quiet chair a bit more, and been modifying how we deal with things and not letting him get away with as much, I think it is starting to do something but again time will tell!

It has to be so hard, I was talking to my mom and you really do get "lax" with them, I know that even though Jack is a baby, he will get away w/alot more because of his reflux. And you don't know what is reflux and what is behavior. UGH.....
Does he sit in the quiet chair? LOL....
Well, I hope that it is only the 2's, then you have the 3's and the 4's and the....... **runs away as Rachel chases me with a stick** :violent1:

Hey Rach!!!!!
What's up?!
No news is good news I suppose, but I still want an update

Well it is good news, he has been doing really well, definately refluxing a little, sleep is up and down, but NO bad days, just bits and pieces and I think that is to be expected.

He has had two small patches of bloody drool on his sheets, but I am pretty sure that is nothing to worry about, I had a look and as far as I could say.

We have been med free 1 month today, and had one shot of mylanta and thats it, I will have to say soon that it is looking very up~!!!

OMG... this is fantastic news!

:yahoo: :yahoo: :yahoo: :yahoo: :yahoo: :yahoo: :yahoo: :yahoo: :yahoo: :yahoo: :yahoo:

:yahoo: excellent!!!! one month, no bad days and only one shot of mylanta!:yahoo:

EEEEEEEEEEEEEEEEEEEEEEEE!:yahoo:

Super cool!

Yeah!!!!
Rachel...great news!
yesterday zach had 2 reflux 'episodes' but it didn't seem to bother him and because we are working on getting him to poop in the potty he held it for 3 days (which I am sure played a role)

Hope things continue to go so well!

Rachel,
It's time for another update!;)

LOL Minnie I was dreaming this morning that I had to update you guys.

Well Parker has a cold, and has been in and out of miserable, he is definately refluxing more, but still not over the top KWIM? This is day 3 with the cold, and he is at the end and he is running and playing just like normal nothing out of the ordinary to see. I was waiting for the first illness to see how he took it and he is pretty good.

I think I am going to have to call it a success soon, I really do, in some ways I feel that the meds were actually making him worse towards the end, I would never have dreamed to take him off in Jan and this would be the result.

He still has little reflux episodes, but it's probably cause I am so used to it that I notice, Dan notices but no one else does, he is eating fine, picky but sometimes he eats a lot, and then won't eat, I think that is Parker, he has no infections to speak of, and his sleeping is here and there, generally now if he wakes at aroung 10pm, I will get him up and he will lay on the couch for 30mn and then put him back he goes back fine, if I let him cry he will cry off and on all night.

But in all he is doing so good, I really don't want to jinx it, but what is it another week till the Dr wanted me to see how he is doing, and at the moment, I would have to say great!!!!

Rach, would the meds make him worse? why would that be?

Very exciting Rachel!:yahoo:
Time is the only thing that will let you know for sure.
It's so hard to wait, but WOW! So far so good huh?
Great news!
So have you had to give him any antacid or anything?

Now, that is super good news.... a cold and not a horrible flare, I do declare that you have a reflux free (to some point) child!!!!!!


OMG.... this is super, fantastic, phenomenal news. :yahoo:

YIPEEEEEEE!
Hey... we are reflux free buddies! :evil4: :smt041 Jack and Parker that is!

Are things still going well Rachel? I have been watching closely as this has been a real roller coaster ride here the last few weeks .....I am hoping no news is good news!:smt041

Thanks Debbie, yes this one has been a roller coaster!

Well this week has been harder but still successful I think. He has been sick with a cold, and quite miserable, though he isn't having many reflux symptoms at all. So I think that for once in his life, he JUST has a cold.

His sleeping is a bit wacky, but what is new, and to be honest to me his waking isn't reflux related, he has other issues going on, with the twitches and also, I am thinking that apnea could be back, but we will see, though I hope not.

You know what I realised today? I rarely see him choke on water anymore, I mean this was all the time, whenever he used to drink. And because he didn't do it, I haven't noticed, until today. My SIL had a drink bottle, and he wanted a drink and she said he could have it, but he can keep it if he draws back in it, and I said, he is two, of course he is going to LOL, and then I said look at him drinking though that is the best I have ever seen, and then it dawned that he has stopped choking on it. He was sucking back on it like nothing else.

Now this was still happening in December before the wean I know it, I would say it was still happenning in Jan, but not so sure, this whole wean and Coopers school has been pretty hectic, so I could even say that he maybe stopped it in Dec...so that to me is a HUGE success.

So that is it so far, I can tell you the only reason I don't want to call it is because I will jinx myself, but I actually talk about him now as it is gone.

:hug: This is so great Rachel!!
I bet you never imagined yourself to be glad he has a cold:smt036
I'm so happy for you, it's been a long road for him....I am just so, so happy:hug:

any updates? :smt036

Well only one you don't really want to hear I am sure. WE had a pretty refluxy day yesterday, but that was the first one in what 3 weeks? I have to say that is pretty good. He was hiccupping all day and I could see it going up and down, he gets this look on his face and he was a bit aggressive. A funny thing though was we were at the homeopath yesterday and he was fine and playing with Cooper great, and then hejust layed on the floor a minute, I saw him reflux then he started hiccupping and then two minutes later he hit Cooper over the head twice with a car and once with his hand, he also tried to throw keys at me, which was actually really good cause the homeopath saw it all, and was quite surprised. So he had some tums yesterday.

But anyway lo and behold, he slept the best last night than he has for a couple of weeks and then woke today happy as larry...so all I can say is it seems the sorta bad days (which are no where like his old bad days) are getting further and further apart. YAY!

OMG! Rach I soooooo have to PM you! LMBO!

Anyway,
Just some tums huh? That's cool.
As long as the tums don't become part of everyday life I think your good streak is still alive and well. Still sounds like a GERD free life to me.:smt041

I'm sorry, but I am laughing at him hitting Coop on the head, not that that is funny, but that it makes him so angry, you know... like DA** reflux.... that's what he is thinking.

Well, hmm... I say, not bad. Especially since he slept well. :smt041 YAHOOOOOOOOOOOOO~:yahoo:

Well I think it is about time for an update, Parker is doing great! I can not beleive it actually and it is weird I only sat down tonight and thought about it all. SO my mind has been ticking over.

I really think I am going mad, but after we saw the homeopath, and that is the only thing that has changed, the remedy, he is on no other meds now, and he is soooo good. It is like he never had reflux, like I said mad I tell ya!

So after the beating Cooper around the head at the appointment, he hasn't had to have any tums, or mylanta, he has been sleeping through for about a week, and not just sleeping through but I have even gone in there in the night and he has not woken, this is a first in over 2 years. I never check him at night cause it wakes him, and if we forget to turn the moniter on or something and go in, whammo he is awake.

The sleeping was really the only thing that was still getting us down, and Dan and I had both talked about him going back to the sleep Dr, for another study as it was that bad.

When I did go in, I watched him for a couple of minutes (which is a rareity) and the jerks (different story)are not there at all, it is so weird, I think I need a drink.

So again time will tell if this is permanent, but it is totally great to have a child unmedicated and doing better than ever.

I hope the next update will be just as good, and I am so glad about the sleep, I am so not cut out for all nighters anymore. Here is a link to my mad thinking tonight!

http://www.infantrefluxdisease.com/forums/showthread.php?t=27825

WOOP WOOP!!!! :party0049: :party0049:

No URPies or anything?!:jaw-dropping:
Rach, I replied to your crazy mad self on the other thread.
It's amazing It really is.
I'm so happy for you and Parker:yahoo:

I hope his wellness continues for his whole life time.
Happy happy happy joy joy joy!!!!!!

ROFL Minnie, NO URPies, I love that it explains it so well. He woke just before (it is 11pm) and I thought OMG I talked too soon, but he just grizzled and was back asleep in a minute. Yes LOL I am mad, but who cares her?

Well guys, it has been awhile, and overall Parker has been great.

But I am starting to waver now, as we are getting into winter I am noticing more and more things, he still doesn't seem to uncomfortable, but he does reflux visibly at least say 20 times a day, you can see it in his face, he does this hic thing, his hiccups are more common, and he is verbally complaining more.

ARGH! This is so hard, I was thinking we will ride this out again and see how he does, but today Parker came down with some illness, he woke in the night refluxing like mad, and he had a really high temperature. I had a flu thing a couple of weeks ago, and it was pretty bad. He slept with us, and I gave him mylanta.

The nurofen is keeping his temp down, but when it wears off it is going real high pretty quick. I nearly caved and gave zantac last night, and I talked myself out of it. BUT just now he went down for his nap fine, but woke screaming and gagging, and dry reaching, he heaved up clear spit up, but it smelt bad, his breath is foul, and he is snoring again.

Incidentally when he did the gagging, he cried to me, he needed medi's, I asked which one and he said the one in the fridge- that is mylanta. So you think he knows? Or any medi is good medi?

I just don't know what to do, I don't know if we should ride it out, or should I give him some zantac and see if it makes a difference? How will I know if it is the zantac or he is just getting better. When he is on the neurofen (its ibuprofen) he is great for 6-8hours. And he has only been sick one day.

What should I do? he is definately refluxing but how do I know if it is bad enough for medicine?

Thanks guys.

rachell seen as you are always so honest I will be too after seeing parker the other day and I know he was having a Good day then I would try him on the Zantac again rather get on top of it now that wait another few months and have hon get worse again

Rach......
Talk to the GI if at all possible. If not, try the pedi, or even your loony doctor (LOL I'm just kidding about loony. I couldn't resist). Maybe talk to all 3 and get each of their opinions. Take from each of them what you need to help you decide what to do next. KWIM?
JMO
I think Parker knows about the mylanta. NO, I don't know Parker, but I know my Eric and before going to the GI and getting him back on a PPI he desperately asked for his crunchy medicine (pepcid) every evening, (he eventually started begging for it 30 minutes after breakfast) after going for so long without even looking at the med cupboard, and now that he's been on prevacid for just over a week, he could care less about the crunchy medicine, and he's as happy as a bug in a rug. I rarely ever gave in to him and gave him his crunchy medicine. The only times I did were when I visibly saw him struggling and only if he spat up some that day (approximately every 4 days). So I honestly don't think he was playing around with attention seeking.
Now that I see Eric doing so well. I KNOW how badly he was doing off his meds....sigh.... I don't like it, and I feel defeated some how, or ...in a way.....weak KWIM, but the changes in him have been amazing.

Ya know Rach,
This could be just a short flare up because of this bug he caught. It doesn't necessarily mean that his reflux needs to be treated and controlled like it used to, just treated temporarily, to help him through a rough illness.

How do you KNOW if the zantac is what makes him well, or if he's just gotten better on his own? You don't, but right now you DO know that he is refluxing and having a time with it. Worry about how you feel about things when he's better, when you need to, but for now... I think it's O.K. to do what you have to do to help him.

Rach,
We both think the same way. All or nothing. But the thing is reflux is too unpredictable and one day is never like the next. It's a constant changing condition (this is why it's so hard to treat, diagnose, and control for most of these kiddos). We can't be all or nothing people Rach. You have NOT lost the fight if you give him something to help his reflux. GERD won't win or come come back full force just because you gave Parker some zantac. It's going to do what it's going to do with or without you.

What would I do without you all? I have been thinking about it lots the last couple of days and of course you are both right, I don't know if it is cause he is a little sick, or what but I need a plan, I have been going out of my mind the last couple of days.

The night before last I went in and watched him while he slept and he was coughing and chewing on it, he was twitching, and he is sleeping on his tummy again with his bum up, this is always a sign. I actually videoed it, and I had it on pause, figures huh?

I sat him down tonight and told him that we are going to go to the doctor to make him feel better, and is there anything that he thinks needs to be better, and he pointed to his tummy and trailed it to his throat and then pointed down his throat. Then he went did these little coughs, it was so sad, Dan and I just looked at each other. I swear it has only just gotten this bad again this last week, and I am still sure that it isn't as bad as before. But we have decided that we are going to try and get into the GI, she is the one who has always given us the best advice and I really do trust her decision.

The problem is she is really busy so I am hoping she will see us, I am getting Dan to make the appointment, he is actually better than me when needed, so that is pretty good. We are also going to stay off meds till then incase she wants to do tests or anything (as long as the wait isn't that long)

I am so sad at this decision guys, this was mean't to be the end, I am happy in knowing it definately isn't as severe as before, hopefully they will just let us allow to use medications for a while longer, keep your fingers crossed that this is something that is flaring because of illness and not a sign of it starting to cause problems.



Rach,
We both think the same way. All or nothing. But the thing is reflux is too unpredictable and one day is never like the next. It's a constant changing condition (this is why it's so hard to treat, diagnose, and control for most of these kiddos). We can't be all or nothing people Rach. You have NOT lost the fight if you give him something to help his reflux. GERD won't win or come come back full force just because you gave Parker some zantac. It's going to do what it's going to do with or without you.

LOL Minnie, you are right, I read this to my dh and he agrees :hug:

WEll,
Rach I hope you get in quickly and come up with something you both agree with. I know it's disappointing, and "It was supposed to be the end" but I think your right that it's a good sign that it's not as severe as before, and that he went so long without needing anything.

It's funny I remember asking the GI "But isn't a good sign that it took 2 1/2 months before it really hurt him? I think it's a really good sign!" almost like begging that I be right and that he doesn't really have bad issues anymore. Come on dude just say that Eric doesn't need to see you anymore! well.... he wasn't impressed at all LMBO...sigh...

But I am, and I think it's something. I mean we are talking about a kid that used to have a hard time with just a dose that was given a little later than usual. KWIM? It only took 2 days off meds before all hell broke lose.

Yes, I think these kids "get used to it" but when I saw Eric arch in pain for the first time in forever, I couldn't help but think that it meant he dealt with things fine up till this point not because he's used to it, not because he knows how to cope with the pain better now, but because it honestly wasn't as bad for him as it was in the past.
I'm keeping this as a small victory. Heck! I BIG OL VICTORY

and Rach,
Same goes for you. This is just a tiny little pebble sized bump in the road compared to the mountains we had to climb before.:hug:

oh Rach, i only just saw this. I hope it is illness that is starting this up again, i guess only time will tell. You are doing the right thing. Remember we are there for you....:hug:

:hug: oh im sory rach that you have had t put him back on meds I knew this was coming after seeing him the other day hopefully once on the back on his zantac he will be all good again

im so silly i read this wrong i was half reeding and half thinkinof our convisation the other day

Im sure she will fit you DR M loves her litle refluxers as you know she wont let him suffer

Dr M would fit us in LOL, but getting past the secretary can be tricky, I know she will at least call, but I need to see her face to face.

If it is a long wait I will put him back on the zantac, but just in case testing etc...I am not going to do anything just yet.

Guys we got an appointment for next Monday with the GI, so not long to wait. Parker is pretty much the same, he is worse at night, and complaining a bit more during the day though.

I am thinking that it may have something to do with his asthma, so puffers may help with the reflux I am thinking, but it won't solve it...

At least we got in quick, so I am happy about that.

WOW! That's pretty speedy!
I hope it's a good appointment and Parker is feeling better soon.
Can't wait to hear how things went!

I'm glad that you got in so quickly. :hug: to Parker.

I tought I should post a bit of an update here, Parker got really bad before the GI, the thing with it I have realised is when it started again, I KNEW it was time for meds again. It got really bad really quick, thats all I have to say about it.

We saw the GI-update here
http://www.infantrefluxdisease.com/forums/showthread.php?t=30332

and he has been on the meds now two weeks, and it really does take this long to work on my little one (unfortunately) we had the problem with the tablet making him psycho, so it must have been a colour or something he was reaction to, we got the compound again, and he has settled a lot. The physical symptoms went away pretty quickly, the gagging and coughing up mucous, hiccups, him telling me it hurt all went away in a couple of days, the sudden aggression is what took longer, and generally that was accompanied with urps, or wet hiccups.

But now I sit and think well he is not sick anymore either, maybe it is better now...I HATE REFLUX did I mention that yet LOL, it just plays on your mind though.

I am thinking of ringing the homeopath again and trying some remedies out to see if that helps as well, and then I may try and reduce the dose a little, I don't know I am still deciding.

The kicker for me is the eating OMG what a machine, he will surely gain a bit soon, which will take him out of the worry zone again, and that will make me happy, so the meds staying at least till summer, then we will try it again...I didn't mention in the GI Update, but she mentioned the fundo, again, I really wish she would stop doing that. She did say he would have to be retested totally again, but I don't think it is in our future just yet, I just hope that the next wean is it.

I had a list I took to the GI I thought I would write it here, if I ever find it I will post exactly what I told her!

Thanks guys for following me through this, you have been my support group, and you all rock!

I glad he is doing better back on his losec, i know that you are constsntly thinking about when you wean him off them again in summer, and i know how much you are hoping htat this is just short term remedicating and i hope so to but for your own sanity try not to think about it too much for now he has 6 months on meds and you never know that 6 months may be enough lets hope so, please dont worry your self sick as that isnt going to help parker or yourself KWIM

I know abouth the GI mentioning the fundo again and i know it scares you but please remember the surgens refer to her as the anti fundo dr and she got that name for a reason LOL and she wouldnt let them do it with out exploring all other avenues first and again as im sure she wil do if the next wean doesnt work

BIG HUGS

Hey Rachel

I was going to ask u how Parker was doing
Glad to hear he is doing better back on meds....keep us posted...

Oh Rach,
:hug:
WE are so much alike, and our little ones too. It's so weird.
Eric's physical symptoms got better quickly (minus some coughing, right when it happens) while the behavior lagged behind too, and yes,
Just a couple days ago I was thinking "Why am I doing this? He's obviously better, he's just fine. Maybe he doesn't need meds after all. JUst because the GI said he needs meds, doesn't mean I have to fill the RX." Dh was saying things like "It's not THAT bad. It's never been THAT bad. I don't think he even needs a GI specialist anymore." It can't be THIS much better just from his meds.

The past 2 days showed us a different story. Something got him going. I wish I knew what. I would give my right arm to know what! WHY? LOL Yep! Insane is the right word.
and now I'm just so stinkin glad we had him on meds, because this flare up would have been hell without them.

OMG! All these kids should have see through tummies!

I'm telling ya Rach!
Someday Parker and Eric are gonna graduate! Until then we have to be patient. This task is nearly impossible, but not completely impossible.
We can do it!!!
Until then I'm so happy I have you to ride the ride with. You don't know how many times your posts have validated my feelings and thoughts, and when you're walking that thin line (insane/sane) it sure is a priceless thing.
:hug:

BTW how tall is Park?
Eric is aprox. 36 inches (they measure differently every time)
and 25 pounds. (he was so dang close to 27lbs!!! URGH!!!)
JUst doing a little baby compare. We haven't done that in a while LOL ;)

Did you stop going to the homeopath?
If so.. I would definetly do that again. I know that you felt like that really helped last time.
I'm glad that he's eating again. Little booger. :hug:

**sigh** I hate reflux too. :sad3:

I know you are right Amy, I shouldn't worry about the wean, but it just plays on you, he was so good so long, and then all of a sudden really bad, but he is well now, and all symptoms have lessened and the bad ones have gone. But I am at peace with him being on it now for a bit.

With the fundo it is more the surgery I am worried about, and I know Dr M wouldn't suggest it unless she thought there was no other option, and to be honest, I don't want him on meds forever so it scares me that this could still be a possibility. But if she came to the conclusion that it was necessary, I do think we would go with it.

Em's, we did stop going to the homeopath, she said to leave remedies for now, and to call if he gets bad again, I will follow up on it, cause it may help, or even just work for the breakthrough pain. Like in the night UGH!!! Shouldn't he be sleeping the whole night in his own bed? It isn't normal at age 3 for you to have a porta cot set up permanently in your bedroon KWIM?

Minnie I get it too, about him being sick and seeing it again, I see parts in Parker, and then nothing, like this past illness, I knew he needed meds it was bad.

But it is just so frustrating explaining to people all the time, they see Parker now and say oh he is fine, KWIM? Sometimes someone will s ay he is a little skinny but other than that most still think I am a little mad.

Thanks for your kind words, I know I say it a lot but Eric and Parker they are just so similar, I too read your posts and go OMG Parker just did that! I hope Eric is doing better now and no more symptoms :hug:

Just as an update, tomorrow we are getting his bloods taken, and also he has to have the DGE (GES) scan tomorrow, so he has to fast all morning, that should be fun! They rang today and asked if he will eat scrambled egg, I said ummm NO ROFL, he will sometimes, but it is hit and miss, so we are allowed to take weetbix yay! I wonder if he will eat it.

Rach,
I hope Parker eats for the test and does it just right so they can get it done. Eric would NEVER eat scrambled eggs EVER! LOL in fact I was just going to post the other day because I actually got him to touch them. This was HUGE for him. He shivered and gaged as he held it, but he did it!
Eric had one of his first scariest choking episodes while eating eggs. It was the day I found out what the dispatch number for the ambulance was here in town (I don't have 911 service), and permanently posted it on my fridge. That and he just really doesn't like them, even when he did eat them he only did it cuz he felt he had to.

Oh and I figured out why the flare up came!!!! He has a cold!!! It's so weird how a cold can make me so happy. BUt really it beats the hell outta calling the GI, thinking the prevacid isn't working as well anymore, or that Eric is getting worse. Just a cold...whew.

And the sleep thing.... No I don't think it's normal that Park still can't do it. Especially since he has done pretty well from time to time in the past. I don't think it's an emotional or behavioral thing. I think it's medical. Yeah, I think the little buggers can get habitual with their rotten sleep, but only after feeling like crap gets them off track in the first palce.

I always tell people Eric is a good sleeper, the reflux isn't. And I really feel this way about it now (go ahead and think I'm nuts, or that Eric is spoiled, etc). Especially after finally taking to the GI about the PH probe and seeing it for myself in black and white. I knew the first three wake ups and the 2 early in the morn were reflux, and the rest were "get this stupid probe outta my nose!" and I was right. God that felt good! and why it took me almost a year before I discussed it with him and actually looked at the test, I will never now, but I sure could kick myself.

Good Luck Rach/parker...fill us in, when you can!

I think he is going to eat for the test, at 9.30 I told him he asked for something to eat and I said that he couldn't and he cried/whined and said "I asked you for something to eat and you said NO" like he was heartbroken, too cute. We woke him up early so he could have some milk first thing, and he is having a sleep now, its 10am LOL, so hopefully I can get him and go straight to the test.

Yeah I think the scrambled eggs was a weird idea LOL, Too funny Minnie about Eric and Eggs, I am the same way, when I was pregnant with Cooper I was sick one night on scrambled eggs and can't tolerate them since. Just the thought ugh! No wonder he doesn't want to eat the eggs after last time.

And LOL on the sleep, thats exactly how I see it, I know it isn't emotional/behavioural, I am a hard nut when it comes to sleep training I am pretty good at going, oh he is playing KWIM? I too think that Parker would be a good sleeper if not for reflux and his myclonic jerks, it is hard. The funny thing is he used to sleep better, and then it goes bad a while and it is a cycle. He is so staying in a cot till he is 10 ROFL.

I also forgot to tell you weight and heigh, weight is 26.6pounds and 36inches (I had to convert LOL)

Kim I will update tonight if I get a chance!

any news on the test rach? how'd it all go?

Awwwwww! Parker and Eric are almost exactly the same size give or take a little poop here and there ;)! How cute. (oops! I forgot the rest of the world uses the metric system LOL)

I can't wait to hear how it all went down Rachel (literally)!!!!!

Rach

Where are U???

Zach is the same height as Parker, 36 inches but he is 31 pounds.....
Since his surgery his eating as gone down hill so of course he is shrinking...ugh

I am here, I am here, sorry guys, I had heaps of work, work to go over with Dan tonight.

Well the test went good, he was so good, he ate the weetbix up in record time he must have been hungry, all he had since the night before was about 4oz of rice milk LOL, and it was 1pm.

I don't know any results, but to me it looked OK, there was a screen and you could see that it was definately moving through, and to me it looked like more than half had gone through at the end of the test (2hours), but apparently they can't tell till they do the figures (well thats what they always say huh?)

So she said the doctor will have the results in a couple of weeks, I am assuming like the pH probe if I don't hear from her it is all good, I asked if you could see refluxing and she said not very well, because he did solids, if it was milk we would have seen it go up and down, the screen I could see was tiny so no way of knowing.

So I fingers crossed guys that it is all fine! Thanks guys!

Oh and ROFL Minnie on the sizes, and poor Zach, I think Parker is tallish, but I hope once he recovers from the surgery soon and he starts getting back on track :hug:

Well the test went good, he was so good, he ate the weetbix up in record time

:yahoo: :yahoo: :yahoo: :yahoo: :yahoo: :yahoo: :yahoo: :yahoo: :yahoo: :yahoo: :yahoo: :yahoo: :yahoo: :yahoo: :yahoo: :yahoo: :yahoo:

ROFL Minnie, I think the weetbix was a good idea, there would be no way he would have eaten the eggs in that time, and reheated, barium filled eggs would have made me gag :rolling:

reheated, barium filled eggs

Ummmmmmmmmmmm... Yummy! :pukerigh:

Oh gross.. barium eggs? ACK...

I'm glad that it went well. :hug:

im glad it went okay rach

did they make him go and get another picture that is what they did with miki casue it looked to them like she had a delay and they was rite so if not maybe that is a sign that he went okay

I'm glad he did so well...hopefully you wont have to track anyone down for the results....praying for good results Rach:hug:

Still haven't heard anything guys, but no news is good news, especially with my GI.

I will tell you that on the weekend we started splitting the dose three times a day (like before) and what a difference, we have a changed boy, the dose is now 24mg a day, but he is doing fantastic, hardly any symptoms at all, happy and fun, I have my little boy back...

and the best news HE IS SLEEPING!!!! Three days in a row till 7.40am, ROFL, well I work or have to get Cooper to school so I can't really take him up on the sleep in offer, but can't wait till Sunday ROFL, and it makes it easier to get things done in a morning without more feet under me. Also he is sleeping through again too, so there it is, it is definately the reflux bothering him at night (we have also propped the cot more than the phone books with pillows under the mattress-that comfy lift bed looks like a good investment now)

I am going to put this is good days, cause he has been a joy.

Also we got his blood taken today, he is such a trooper, he watched it and everything, and all he did was this little wimpering, and he said to the nurse, stop it, you are hurting me :rolling: he was SO good, I was proud.

And the thanks isn't working LOL, so if I have missed you THANKS!

Well I thought I would update a little here as to what is going on, Parker is now on 24mg losec a day and is doing really well on it, so well that I am starting to think, was he that bad? KWIM? The usual reflux worry.

So today the GI wanted to do another endoscopy mainly to see if the medication was working and that there is no inflammation while on medication.

The endoscopy showed that everything was good, but we are waiting for the biopsys.

SO here are my worries, wouldn't there be some inflammation? I mean he has had reflux all his life, and he was off meds for 4 months, and 2 of them about where starting to get bad, and he is only on the losec 8 weeks, so does that mean there was never inflammation, I don't know what I am trying to say, just that I think I was hoping there was some inflammation to show me that the reflux was there, and that the losec hadn't been used long enough and that it would go away...

I don't know, reflux sucks, have I said that enough lately?

In all though he is doing pretty good, he is telling me sometimes that his tummy hurts, and goes ow, ow, ow, like the other day at work they let him have a pack of twisties and I seemed like the bad mum who didn't want him to have them, so I let him. He is sleeping good though, and sometimes wakes in the night, but is putting himself back to sleep generally, and he sometimes dreams and says ow in his sleep (sad huh?)

oh rach. this is a tought one. but naomi's scope came back with little inflammation and that was at almost a year old and she had been refluxing like mad all her life...she was on 20mg losec and zantac also at the time, but i found it strange too, i really think it meant that the meds were working. 8 weeks is a while, but the biopsies might give you more answers. I would put this in a thread of its own too rach, people will see it better there...xx

Rach,
I have said it before and I'll say it again. These meds work, and they work pretty darn fast. We see it every time we take our kids off and then start back up again.
The biopsies might tell a different picture, but if they don't, this doesn't mean that Parker doesn't have reflux anymore, just that things are doing O.K. and the meds help. Talk to the GI about this. Talk about the confusion you have with the results. Get their take Rach. Ask them what they would do.

Rach,
I'm in the same spot as you right now. I swear, I'm not making this up. I'm wondering now if Eric needs the meds. He gets tummy aches and I think the meds are what's causing them. I look back... "was it really that bad while he was off?" I mean I went to the GI appointment all excited and expecting him to say "No need to come back and see me anymore."
and it bummed me out when he shook his head and said "doesn't sound like it's going very well."
I'm questioning everything all over again. The I have to remind myself how wonderful he was doing when we started him back up on a PPI. How I was amazed and felt so guilty for taking him off. Why I can't see that right now is beyond me, but all I see is "I think he doesn't need this PPI anymore."
I'm contemplating taking him back off prevacid early. This is after fighting for another month of pills, not too long ago...now... I want to try it????!!!
I'm gonna read my instruction sheet again and check all the dates, and then call the GI, and hope he makes up my mind for me.
I swear I'm insane.
I really wish Parker and Eric could just tell us what to do, or at the very least be a little more clear in the picture they give us. I swear it's like they both wobble on this fence falling one way and then falling the other, and we are running back and forth trying to keep them from getting hurt. I don't know about you but I'm out of breath and tired of playing this game.
:hug:

and the twisties.....
I do stuff like this all the time. I know he shouldn't have it. I know there's a possibility that Eric will have to pay later, but I let it happen all the time. I don't want to get caught denying him anything because he's so small, and I guess a part of me feels like every one might blame me for his weight if they see me say "no" to any food. There's more to it than that,but I almost NEVER stop the stupid food from being offered even when he's already feeling bad.

Thanks Minnie I knew you would put it in perspective for me. I am sort of putting it out of my head now, I just wish there were easier ways to diagnose this crap thing without all the invasion on our little ones.

I just wonder what they biopsy KWIM? I had a scope in Feb and it was clear but the biopsys showed inflammation (which mean't I was getting better), I asked the GI and she said the biopsys won't show past inflammation? So that is weird.

And yes the meds do work fast, so I suppose the best case senario is that they work, they work fast and that is all we need to do.

I just hate that do they or dont they, when they are good they are SO good aren't they, you know I took some video of Parker just before he went back on the meds and he is in his cot telling me that it hurts, and telling me to get it out and shoving his hands down his throat, I had some really good ones when he was asleep and coughing and you could see it coming up and him chewing on it (gross) Dan had the torch and I had the camera, but I think I was so stressed I left it on pause. But even the mild video is enough to make me see that he does have some issue.

So are you going to go off the PPI again? I don't think I am going to do it unless the GI suggests it until summer.

And I am insane too, I just hate feeling this way, I like to know what I am doing, and know that it is right and three years on, I am still asking myself is that right!

And Parker still complains when things hurt, just last night I saw him refluxing and I said are you OK, and he said it is sick, and I said where and he pointed down his throat, I mean this is a very definate indicator right? But then how much of this is enough to warrant being on the PPI, I am so confused.

Nic, thanks! I did set up a thread about the endoscopy, I didn't make it a whole thread because it was more of a vent, I do get over it. It is good to know that Naomis scope was minimal on the losec.

The original plan was to have him off the prevacid by mid July, and only taking one pepcid a day by October. Then I talked the GI into one more month of prevacid so I could wean more slowly, but now I don't know if it's what I want to do anymore.
I feel like I'm at this weird place. Fix him or let us be. KWIM?
Since he can't fix it, I guess tell me where it all comes from, and if you can't then why do we need to see you at all. I can get RXs for what ever Eric needs from any doc. Or keep buying the OTC pepcid you originally thought was all he needed. I'm not even sure if he needs anything to began with, but ask me when he's urpy and I'll tell ya a different story.

Then there's the If it's causing damage, Prove it to me. All of his "esophagitis" symptoms are gone, and they were gone when he was off the meds too. They were gone as soon as he had his T and A, can't help but think the doctors were wrong on this one and it wasn't ever esophagitis at all.
I guess it's just time I pick the GIs brain, and if I come up empty....well.. I guess it's no different than where I am right now.
But waiting till October is gonna kill me (especially if the wean doesn't go well). I'm gonna ask if he can see us sooner.

Rach,
I just don't get it. How could they do so well, even off meds, and then just turn back into urpy boys that have sick in there?
I've seen this happen on and off meds, (the smell, everything) it's like it's a random visit here and there just to mess with our heads.
I always thought things would be clearer by now, but I think the picture is actually getting a lot foggier.

Minnie and Rachel, I know just how you feel as this has been an on-going debate in my head with Ali (who remember is 10 years old so it has been going on for a looooooong time!). I know she still refluxes but she claims no pain (claims her tummy hurts sometimes but this is b/c she gets too full - she must have some DGE issues but never diagnosed). I worry that she is damaging her esophagus as well but hesitate to put her medication or even go through another scope or have a milk scan just b/c I am being paranoid.

I spoke about this on Emily's thread as she is concerned with Jack as well. I just think there is so much unknown about reflux and how the acidic as well as non-acidic fluids of the stomach effect the cell development of the delicate tissues of the esophagus and pharynx. The more I learn sometimes the more confused I become!

The more I learn sometimes the more confused I become!

Exactly!:hairpull:

Thanks Pam

:sad5: I got nothing, just ((((((hugs)))))) :hug:

*sigh* why is it so darn hard?

Rach,
I just don't get it. How could they do so well, even off meds, and then just turn back into urpy boys that have sick in there?
I've seen this happen on and off meds, (the smell, everything) it's like it's a random visit here and there just to mess with our heads.
I always thought things would be clearer by now, but I think the picture is actually getting a lot foggier.

No idea either Minnie. I think about it all the time, then I think I am imagning it, but then I think well Cooper doesn't urp, or say his throat hurts, his tummy hurts, he feels sick, doesn't do this hic thing, and his voice actually stops when he talks, like a pause, but it is something blocking the sound it is weird, but it is there.

But then he is PERFECT and I think I am mad...

I just wanted to update here and say that we had the GI today, I updated in the updates forum, but I wanted to add something here, and that is that the GI is happy for Parker to be on meds until he is 4 before discussing surgery, so my 3 year timeframe is gone :yahoo: I was really worried as you know, his birthday is coming up, but she basically said that he does well on the med, why complicate it with surgery.

He had no inflammation, celiac, EE from the biopsy from the endoscopy, so she is happy with how the losec is working (as am I)