and what does your GI think about it?

Now that Eric has been on a higher dose of PPI. I can see that he is feeling better reflux wise, and kinda feel like a jerk for thinking he was doing so well in that arena when it's so obvious he wasn't, and could have been doing better. but he still refluxes and has the same symptoms that the GI said meant his reflux wasn't under control. His old GI said the same thing, "His reflux isn't under control" but then cut his prilosec down which didn't make any sense at all. (can you say IDIOT!?)

I know we are supposed to try motility agents again this month, but honestly I don't think they will make much difference. This will be our third attempt with reglan, and our first with Erythromycin that may or may not give him a side effect, that may or may not help.
Ummmm yeah, I'm not putting to much stock in this.

The dude fluxes when he eats/drinks, when he lays down, when he sits for too long especially in his car seat, when he exercises, when he eats bad reflux foods like chocolate, and when the wind blows just right. He still wakes nauseated, he still has tummy aches daily, he's still the hiccup and burping king etc etc I don't see that changing, and I'm just glad that his reflux doesn't hurt anymore, that his sleep is more sound, that his swallow is O.K., that it doesn't stop him from playing, talking, breathing, or eating, and doesn't make him lose weight anymore.

I'm just confused. I'm being told differently than what I had always been told when he was a baby. "The meds don't stop the reflux, but help with the discomfort, pain and damage"
and all of a sudden, even though it's the best his reflux has ever been and there are no complications from it anymore....it's "not under control". WTH?
I know Andrea is kinda going through the same thing with Hunter's doctors, but I wonder if any of the other older kids have been told the same. and if so what's going on as far as treatment?
Is it different for an older kid?
More adult like or something?
Is it supposed to make his reflux medicinally "go away" now that he's older like how my pregnant reflux was on meds?

Let me in on the day in the life of your refluxer when their meds are working and everything is groovy.
Did your child's treatment change when they hit a certain age? LIke when Eric was 18 months and still going at it we got all kinds of attention. Does this happen again when they hit school age, and I should just roll my eyes and let the doctors think what they want, or what?

I am sorry that Eric is still having such a hard time, poor little guy. When Sebastian's meds are working it is like he does not even have GERD at all. He is totally fine. But then it rears it's ugly head again and he will start with the painful hiccups, tummy aches, not eating, and being a crabby, emotional mess.

That is where we are right now. I was just getting cocky again, cuz he was doing so well on the higher dose (3.5 ml) of Axid that i was giving him a little less and forgetting doses here and there. He has been really bad for the last week and does not seem to be getting back on track even with consistant meds. I am sure it is time to move on to Prilosec, but I just don't want to deal with it, as bad as that sounds. I am hoping that he will get back on track soon.

:hug:, Minnie...I can't really comment, as I don't know what a typical older refluxer is like. :oops:

If it were me, I would definitely give the motility meds a shot...I would try anything. Are you going to put him back on the Polycitra, too? Do you think the two were related and that when the pee issues are worse, his reflux is worse?

I wish I had some answers for you. :(

I don't know Minnie, he is on a super high dose of losec, I would think motility meds would be an overkill? For us, on meds it is like he doesn't have reflux, I rarely see him urp. He coughs a bit and sometimes has bad sleep, but apart from that he is pretty good.

What I notice when he is sick or when the compound is starting to get old, I see that his agression gets bad, he is less tolerating of things, causes fights, yells a lot, we get a new batch and 2 days later he is fine again.

I think that if you think the reflux is under control, that is not causing him any damage, and that he has visible signs of reflux but not causing a problem, I wouldn't touch it. I think the older they get, the harder it is to tell. But at some stage, I think, I have to say is we have to put up with some things, cause we are in tune, we know what is going on, but I am sure this is happenning to tons of kids, who's parents just put it down to a bad child or something.

Also with meds, how high can they go? If this is something they have to be on for life KWIM? I have been on losec and when it was really bad and I had gastritis, I was on 40mg a day, and after 2 days, I had no symptoms, when I get a flare now, I go onto 20mg and it works fine, kind of concerns me that Parker is 4 and needs 30mg, for no gastritis KWIM? I don't know if I am making sense, I just woke up lol, but I suppose what I am saying is, I think his reflux is now under control, don't mess with it, get his wees sorted and I think you will have better results.

I would try the motility meds with him, on the dose of meds that he is on its unlikely that the PH of the reflux is that low KWIM ( with out a on med empednce yoou wont know i gues) but its maybe the actualy action of the reflux as in the gastric content going up the food pipe that is hurthing and anoying him rather the the acid as such, I think alot of time that is down played in reflux that its only the burn that will hurt where as the action of vomiting or silently vomiting half way up the esophagus wil stil anoy you stil hurt and make you not want to eat and make yoou hiccup KWIM

I would say try the montility meds you may need to alternate them but like 6 weeks on one then 6 on another and so on and so forth as they tend to stop working

I would also be asking for an empedence study so that you can see how low the PH actualy is becuase if its not low then there is no point on keep upping the PPI KWIM

We have just lowered mikis PPI to 20mg a day for the simple fact that when testing the PH of her reflux we found NO diference between 30mg and 30 mg She has been on doses alot higher then that whe the evidence wast there that the PH was low and she was bleeding, and if the arises again we wil increase but for now 20mg gives us the same PH as what 30 mg dose, the PH of her reflux is curently at 3 so yes stil lower then the bench mark of 4 however the highers PPI didnnt get us over the 4 anyway KWIM

Its worth knowing what the acid level is when trying to treat it is basicly what im saying

I was just getting cocky again, cuz he was doing so well on the higher dose (3.5 ml) of Axid that i was giving him a little less and forgetting doses here and there.


You just made me realize/remember that I haven't felt this way in a really really long time, and I used to do it all the time. I was the poster Mom for it. LOL

and Rach, I remember saying "It's like he doesn't have GERD at all when he's on his meds"
and I can't help it, but a part of me feels a little disappointed that you are still saying it, and I'm not.

It's so weird that I forgot that this was how it used to be. Maybe the whole pee thing really IS playing a huge part in all this. A bigger part than I gave it credit for.

and Amy,
Miki was still yucky in there even after being on a high dose of PPI?:sad5: It makes me wonder what Eric's esophagus looks like now. He was on meds for his scope and it wasn't great in there. His PH probe (off meds) wasn't bad at all. It was very acidic between 1 and 3, but the reflux episodes were super quick. The longest one was only 3 minutes. I think I'll talk to the GI about this next time we see her.

oh and we are doing the motility meds for sure. I'm supposed to take my pick and trial each one for 3 weeks and see what I think.
Sounds fair enough to me
I mean WTH? right? We might get lucky (eye roll)

Try the erythro then, I have always found it good. We aren't on any motility meds, but he is on a erythro type antibiotic at least 10 times a year (no joke) and he always does well on it and eats up a storm. Since you have tried reglan maybe it is time to try a different one?

Also I agree too with Amy, she explained it good, maybe it is the motility med he needs and maybe lower the PPI dose, that will cover the acid, and the motility med may cover the urps and hiccups etc...

I am sorry you are still having to wade through all this crap :hug:

:hug: I know how frustrated you are.

Ethan is on 30mg of Prevacid. He gets 15 morning and night. He doesn't seem to be still having the pain and such from the reflux but I can still here him refluxing daily. It's usually worse if he is sick or the least bit congested. He'll be turning 3 in 2 months. I didn't expect him to be still dealing with this now....so I know how you feel and how frustrated you are. I think it is a good idea for you to try the erythro. You already know that reglan didn't work for you before....try the new one! :hug:

Well my kid's not an "older kid" as he's not even 2 yet, but you knew I'd be interested in this as, like you said, we are going through something similar. I guess I dont have much useful info to add as he doesnt fall into the age group that you;re really looking for info on... but thanks for posting this thread as I will certainly be continuing to check it out

Sam's now 2 1/2 and still on 40mg of Nexium (20mg twice a day). We NEVER skip a dose (seriously, only once in his life, and that was by mistake) so I don't know how he'd be without his meds, or with less. He's doing pretty well right now, but it's up and down. He went a whole month without throwing up, but he has thrown up a few times recently. I always know when he's not doing great - his appetite decreases - or at least, he becomes even more reluctant to eat. When things are good (like at the moment) he's prepared to try new some things to eat and gets his food and drink down with out fuss.

I really don't think his reflux affects his quality of life (apart from his very regressed feeding skills). He gulps a bit, vomits sometimes, but takes it in his stride. I don't know what is going on in his tummy now, but after being on 40mg of Nexium for almost a year he still had inflammation and a stomach erosion, according to the scope in Nov.:sad5: He's having another pH probe in June probably, must still talk to the Dr about whether it should be on or off meds. His one on meds last year showed lost of reflux, but non-acidic.

I hope that the motility meds are a good option for Eric. We haven't tried them yet.

It's very obvious that Mag has reflux even on prevacid. She has a bellyache every morning. Sometimes in the afternoon too. She burps a good 50 times a day. Tells me at least once a day that she's puked in her mouth. Hiccups probably 4-5 times a week. Needs Tums just about everyday. Mainly after she eats.
We've tried motility drugs but didn't see a point really. Plus she doesn't have DGE.
If we are just an hour or so late on prevacid she's miserable for the next 12-24 hours.

As everyone knows, her GI wants to do a fundo & G-tube. We fought him on it for years. He's now supportive of us to hold off since she's doing better. He still tells us at every appointment that he's just waiting on us to be ready. Ain't gunna happen baby!

It's very obvious that Mag has reflux even on prevacid. She has a bellyache every morning. Sometimes in the afternoon too. She burps a good 50 times a day. Tells me at least once a day that she's puked in her mouth. Hiccups probably 4-5 times a week. Needs Tums just about everyday. Mainly after she eats.
We've tried motility drugs but didn't see a point really. Plus she doesn't have DGE.
If we are just an hour or so late on prevacid she's miserable for the next 12-24 hours.

As everyone knows, her GI wants to do a fundo & G-tube. We fought him on it for years. He's now supportive of us to hold off since she's doing better. He still tells us at every appointment that he's just waiting on us to be ready. Ain't gunna happen baby!


you guys have done so well at avoiding it but you have obviuosly done the right thing because if she needed a fundo and a tube so badly and not had it she wouldnt have survied this long KWIM, like I know she is small but she isnt dangerously malnourished or anything which is great you guys have done a great job

Mikis surgen ( new surgen not the one that did the fundo) says that if the reflux is bad enogh to require a fundo then the reflux wil be bad enogh to undo one, and if the reflux isnt bad enough to undo the fundo then they dont need it, Hence why he doesnt do fundos any more

Well, Allie isn't typical either, but I am so tired of GIs. Every GI we see just wants to write me a script and send me home. No one wants to try new meds, new formula, tests, etc. They all think that Allie has another underlying issue that is genetic, or autism, or whatever, and so that "explains" it. It really pisses me off. So what if she is delayed, or has another problem. That doesn't mean that we just throw her away and make her suffer, right? To me, it's never going to be good enough until we try everything that is out there. We haven't done that yet.

Minnie - I am so at a loss as to where to even take her next. I know you guys lived in Michigan. We've done Children's and recently saw our 2nd GI at U of M. In total, we've seen 7 different GIs, who offer nothing. Blah.

But, to answer your question - Allie pukes about 1-2 times a week, depending on the week. I posted a while back that it was getting better, but it's not. A cold will set her off, and so will just about anything else. We have good days and bad days. I'm hoping that come summer, she will not be sick and we will have a few good months. People are constantly asking me if the doctors think she will "grow out of it." Unfortunately, the doctors don't offer anything to me at this point.

Christyn,
first off I think she could definitely go higher on her zegerid. Eric took 20mgs when he was on it, and before the GI we saw freaked out that he was on too much, he was taking 40mgs a day (taken three times a day) for months.
Have you gone to Kalamazoo? That's where I was going to go if I hadn't moved.

I know what you mean when you say that doctors are saying "Oh!", and then tossing you aside. Eric's old GI (Dr. Malas. If your kid doesn't have celiac forget seeing him) did that. "He has kidney stones? OH! That explains it!" he actually chuckled a bit, and then messed with all his meds and not for the better. I seriously could have hit him. My heart was pounding out of my chest as I was leaving.
But what's weird is all the other specialists he has ever seen, they all shove everything onto the GI, and blame everything on GI problems. URGH it's so frustrating!

I can't wait to meet his new Pee doctors within the next couple of weeks, but at the same time I dread it, because I have a feeling there will be a lot of buck passing and nothing really happening for him. I could be wrong. I have been told over and over that the specialists here at CHKD work together well, but history of what we have already experienced jades my feeling about it all.

I'm going to try my best. I feel more confident than I ever had throughout all this. Like I know what to say, I know how to act, I know what to ask, to get them to listen.
I think I can I think I can.
UGH I hate what a wuss I have been

Christyn
You need to do the same, when your ready to take it all on again.... Get your fight on again and be Allie's voice. Don't leave the doctor's office with your heart pounding out of your chest, and with things left unsaid. (((HUG)))