I need help with trying to decide whether to do the fundo. Noah has apnea and aspiration. He has had chronic congestion since August of last year (he's 12 months now and started congestion at 3 months). He has had a pH probe that was 123. Most of my doctors (ENT, Ped, Surgeon) are saying he's really severe and a rare case, but my GI doctor doesn't seem to think he's that bad. She thinks it's a milk protein allergy...but biopsies were negative. ENT recommended fundo because of the apnea and aspiration. He's on prevacid 15mg packs 2x a day, Reglan 2.5mg 4x a day, Erithromyacin .5mg 4x a day, Zyrtec 2.5 mg once a day, and a multivitamin with iron. I am leaning towards the surgery because it appears he's getting worse. The aspiration just came within the last month and the apnea started at 5 months...so it's been around awhile. I'm just frustrated and I think it would help to talk to other people in the same boat. I don't know anyone who's ever had such a case of GERD. The only good things are knock on wood...he's 25 lbs and has no problems with eating or thriving. He also has never had an ear infection. We had an adenoidectomy at 7 months and a broncioscope (spelling) with biopsies at the same time. Any help would be appreciated. I don't want to wait on the surgery and have something worse happen to my sweet baby boy. By the way, his name is Noah Aaron Polatty....hence, NAP's mom.

Thanks.
Brandi

Well I really haven't done a lot of research on the fundo, but I would think that they would only think of doing it if the childs esopheogus was always inflamed and not able to mend, not gaining weight or having really serious side effects to the reflux.

With the apnea my son was first suspected sleep apnea at 6 months, we have since been cleared, my sleep specialist thinks that it is 100% reflux realated so her theory is now that Parkers reflux is under contol so too is the apnea.

With the score of 123 was that the amount of times he refluxed in a 24 hour period, or was that his Boix Orchea score? My son reflux 156 times in 24 hours and 142 times of that was in 12 hours during the day, and they term this as significant reflux, but not enough to think about the fundo.

I am leaning towards the 123 as times refluxed??? My opinions would probably be a lot different if that was the BO score.

Have you tried a milk and soy free diet? This will help tremendously with the reflux and also the side effects- pain etc. I think that the GI would probably be the best person to listen too in this instance (but I have heard a lot of dodgey GI's also)

With the fundo has anyone let you know that it may make the reflux worse? It is not always a successful procedure.

Finally with the GERD at 12 months, when I joined I too had never heard of a child still having severe GERD at this age, I was always told that they grow out of it, well not all do, a lot of babies here are now older than one (mine is 20 months) and still refluxing!

Good luck with all of this, please have a good look around and ask as many questions as you need. Nice to meet you Brandi!

Thanks for the reply. We are on a milk free diet, but not a soy free diet. He had an adenoidectomy to try to relieve the apnea, but it's still here. He is also now having aspiration where parts of his body turn blue. I think the 123 was times in a 24 hour period. The funny thing about the pH probe is that he only threw up 1 time that day. It was a "good" day. I remember taking him back and telling her I didn't think he had refluxed hardly at all during the probe. That's when I learned that he refluxes more than I could ever measure. Yesterday, he threw up 7 times. My only concern about waiting like the GI doctor said is the apnea and aspiration will worsen to where he has a more serious episode or more serious damage is done. I think this is the main reason the ENT went ahead and sent us to the surgeon. He said something has to be done to make the apnea go away and now that the adenoids are out...ears, nose, and throat look good it is most definitely 100% reflux like you said. Unfortunately though we are not under control with meds. Our doctor also said it could be 2 months before we find out if it was the milk he was allergic to and then another 2 months after we take him off soy to see if he's allergic to that. So all in all another 4 months of waiting knowing that my child isn't breathing at night like he's supposed to and also that his oxygen is so low at times or he's breathing enough in to make himself turn blue. Everyone I've talked to has said his symtoms are rare because he does not have a problem thriving. He's 25 lbs!

Oh well. I'm seriously praying about it. I know it's a terrible surgery and really is going to be a trying time. I want to make the right decision. I really don't think the doctors would tell me to do it if it weren't a last resort. We live close to the Medical College of Georgia...don't know if you've heard of it, but it's supposed to be a great children's hospital.

Thanks.
Brandi

I thought the same thing when we had the probe, tht he didn't reflux much and we had a big reading as well. If it is any consolation the 123 isn't that bad a number, it indicates reflux but my GI wouldn't suggest the fundo till at least past two on those numbers. (Not trying to make it sound like it isn't significant- it is)

The reason being is this I was told something like 95% of children outgrow reflux by the age of 1 and 98% have outgrown it by two, so having the fundo may just be for nothing if you know what I mean, he may well grow out of it anyway.

If it apnea due to reflux, then removing the tonsils will not help, it is a reaction to the pain they feel and they hold their breath, i am assuming that you have had a sleep study done before and after the surgery to confirm the results? What did it say- did it read that he would never stop breathing cause it isn't coming from that part of the brain, when he had apnea episodes did he lose oxygen, what were the sats and for how long? I know you said he turns blue, I am also hoping that you have an apnea moniter. If he hasn't had a study done then I would seriously consider it as it can tell you a lot more than just if it is apnea, it can tell you whether to really worry or not.

Did the probe indicate any asthma?

For you before considering surgery I would do the following things-
Keep him milk and soy free, do a trial of foods ,1 food every 1 or 2 days and eliminate all that are causing him pain, I maybe tryo change his meds if the prevacid isn't working efficiently, we use prilosec and it has been great we also use zantac at the same time, I would not stop without introducing the zantac to tide you over till the new med is working.

No amount of reflxu med will stop him from vomiting but it will ease the pain of it and the amount of acid it contains also.

From reading your last post I would probably agree with the GI for now, mainly cause the fundo is not a 100% effective treatment and there are side effects from this, as a GI he has more experince than the other Drs with this and he has seen all the side effects. With the allergys just because the biopsy came back negative this is for a different type of allergy and will not indicate if it is a milk allergy and if it is an intolerence instead of an allergy it is more than likely that no test will show it, but I have done the elimination and I can say that within a couple of days I have noticed a difference.

I don't know of the hospital (I am in Australia) but I would try it out and see what they say a second opionion can't hurt!

Good luck again.

http://www.infantrefluxdisease.com/surgery.php
I dont know if you have read this.

First of all, he did not have his tonsils taken out. He had his adenoids taken out. They are separate from your tonsils and can cause sleep apnea, snoring, and trouble breathing all of which he had. We thought having them removed would solve the problem.

We have had 2 sleep studies done. One was done before the surgery and is why we had the first surgery to remove the adenoids. The second was during a "good" time for him with no throwing up and we thought the meds were working. It was also positive for apnea. That is all I know. About a month after the 2nd sleep study he started having persistent periods of aspiration.

That is why the ENT wants the fundo done. It's because he knows that the breathing problems are 100% reflux. I've been told by several of these doctors that Noah's case is rare because he is not typical in having a failure to thrive, no ear infections, and really is a happy baby despite all of the refluxing. He doesn't fuss much at all. It's hard to tell if he is in pain. The only way we really know something is wrong is because he does throw up a lot and he burps/hickups a lot. We hear him stop breathing at night when he's sleeping.

I'm not saying I want to have this done. But we're already in the group that does not outgrow by 1. We know he could outgrow by 2, but we are concerned his breathing problems may worsen to a point to where we wished we had done the surgery to get that under control.

Furthermore, we have tried the Zantac. It was the first med he was put on for the reflux. I'm glad it's working for you, but it did zero for Noah.

As for the prilosec, I don't know why that hasn't been mentioned. I'm starting to question my doctors a little because I don't seem to have as much information as everyone else about his condition. Like I am ASSUMING which isn't good that the probe didn't indicate asthma since they have never mentioned him having asthma to me. He sure coughs a lot, which I know can be a result of the reflux itself. I don't know all the questions to the sleep study you asked me. All I know is that they were both positive.

Also, we have never been tested for the DGE which I think is a real possibility for Noah. He was put on Miralax at about 6 months. We have a hard time with the Miralax though because when it does make him go he can't stop for a few days and has like 5 or 6 loose stools a day. It's just very frustrating. I really think my doctors are the best in our area, but maybe I need to leave my area.

I'm going to pray about it and give it some more time.

Thanks
Brandi

If I have learn't anything about Drs, unfortunatly if you don't ask they don't always give you the answers. My GI told me that Parker had reflux, the probe shows it, have these meds, I actually stole a copy of the results when I was given my file in hospital one day and thats how I know all the ins and outs.

The fact that he isn't fussing may mean that the reflux part of it isn't bothering him, with that I don't think you should change the med unless a Dr thinks its for the best, with the zantac I wasn't saying take it alone, I mean't if you swap meds take it also at the same time until the new med kicks in.

Your Doctors sound like they have done all the right things testing etc (which in itself is really good). I think if you could get a copy of these results and put it all together then you may be able to work this out. You have a lot of new things to work with and hopefully it will lead you to your decision. Good luck please keep us updated.

Wow this is a tuffy
I don't know what I would decide if I were in your shoes, and I have SO many conflicting thoughts that I doubt that I can express them all correctly, and I decided not to try.

I do have something else for you to think about though. Not that you need this to be even more confusing and difficult, but if you suspect possible DGE, you should look into it. All the fundo info I have read and stories I have heard all pretty much say that fundo and DGE don't mix well at all, so you may want to rule that out first, and get an emptying scan.

My son has breathing troubles and I'm sure he has apnea (even though doctors never tested or confirmed. Eric's medical care has been more than less adequate until now) It's improved since he was a newbee. He still stops breathing at night, but not for as long and not as frequently). I think Eric's breathing(while awake) has gotten better over time too, and he mostly only has troubles while eating and afterwards he's a little wheezy.
My son is also very happy and hard to read most days. There are some days/nights when I know he's having an extra hard time, but in general he is a very happy self sufficient dude. He doesn't puke, so it's really a mystery.

I don't know. Eric's breathing doesn't sound as severe as you sons by any means, and it definitely hasn't worsened over time even though he still has bad spells with it. So I just can't even try to put your shoes on. My feet must be too big :)

I wish you all the luck with whatever you decide to do, and I hope you can be a peace with your decision as well.

Thanks Minnie.

I am change my mind daily. It's just hard to think about messing him up when he APPEARS to my eyes to be so healthy. I know from tests and the puking that he isn't. It's really frustrating. I know for sure I'll at least get a second opinion....hopefully from the best there is....and I'll go where I need to go to do that.

My daughter did not have any apnea or aspiration that we knew of. I just wanted to send you {{{{HUGS}}}} and let you know that I'm going to move this thread into the Fundo forum so you get some responses from mothers whose children had fundos. They are an awesome group of moms with great experience.

If you want me to move it back to the allergies forum, just let me know. :hello2:

Thanks so much. I've put a few threads in the fundo area I think, but I'll take any help I can get to help me with this terrible decision.

The funny thing is that my doctors have told me how different of a case he is. I now know what they mean. I think there are other cases much more severe, but he's just not presenting like other typical severe children....but he's still severe...does that make sense?

You're welcome. Just let me know, at any time, if you want me to move it back. I PM'ed one of our Moderators whose son had a fundo, so she'd know this thread is here. Her name is ElisMom. She's awesome.

:hug:

I hope you get some good information so you can make a good decision. You've definitely come to the right place. This website/message board is a wonderful because of the caring parents here.

I wish I had some great advice to offer, but I do not. Sam had apnea issues that were reflux related and have seemed to resolve with the fundo. Sam has other medical issues and we knew that the fundo had to be done.

It is a big decision to make. My only advice would be to get another opinion. Sounds like your docs are good---but having another doc come to the same conclusion or offer up another solution may make you feel more at ease.

Oh, I am already talking to you in the other thread! So, you know what I have to say already! (((hugs)))

I may have responded in another thread, I don't remember...if I am repeating myself, sorry!

Aspiration seems like a pretty serious issue. I would see a pulminologist and discuss the risks of continued aspiration. If you are SURE that the aspiration is from reflux, and not from swallowing--I would really consider the fundo on the basis of that alone.

Everyone on this board may be surprised to hear me saying this as I am geenrally against fundos for most children. Permanent lung damage is a really big deal though. If I am not mistaken, this damage from aspiration can occur with or without acidic reflux. He can take all the prevacid in the world and still reflux into his lungs.

That is great that pain is not an issue for him now, what you have to really weigh in is that pain may be an issue after the fundo. There is a lot to consider--such as would the surgeon place a gtube to relieve gas bloat, then remove it after a set period of recovery has taken place? If not, gas bloat is VERY painful. I would also insist on a gastric emptying scan. If he has DGE, he would require a pyloraplasty at the same time as the fundo. The pyloraplasty carries a BIG risk of dumping syndrome, and as a result blood sugar issues. It also can affect their weight dramatically. It is manageable for most kids--but something to deal with. The other BIG side effect is dysphagia--trouble swallowing. This can be really severe. My daughter has to take an antidepresant called nortriptyline to relax her esophagus and stomach just so she can swallow normally. It has been over a year and a half since her last fundo, and she still needs it. She also takes the med to prevent painful spasms in her esophagus, stomach, and intestines. For my daughter, this may or may not have been something soley caused by the fundo, but it is a very high potential risk for all fundo kids. If this was something that was a problem before, it will definitely happen after, but much worse.

I have to go but I will check back later. I guess bottom line--from a pulminologist's perspective--how serious is the aspiration...then copare to the very real side effects of a fundo. If it means anything, my daughter's respiratory problems were the only things solved by the fundo. If that is the only reasons you are doing it, it may be a good thing. You just may be bitter that you traded one set of problem for another.

Thank you so much, Carla! We are very concerned about the side effects and that our very happy go lucky...I'll eat anything...I'll do anything will be forever changed to a completely different kid. However, like you said though if he is suffering life threatning problems then we need to fix that...and if this is how you do it then this is how you do it. We will definitely get another opinion and thanks for the info. on the pulminologist. I'll ask for that on Wednesday when we meet with the surgeon. I have a friend who's sister-in-law works at Texas Children's. She says they have a lot of success with them down there and are very routine. I'm willing to fly down there if I have to. We are in South Carolina...but at least we have our friend down there who could offer support.

Thanks againn for your advice and I appreciate all of your support!

Prayers and hugs. What a tough decision.

Your welcome! Making the decision to do a fundo is really hard. I was very much like you sound before my daughter's first fundo. I was very matter of fact about her needng it because she had serious complications caused by her reflux. She had apnea/laryngospasms, stridor that never went away because her vocal cords were severely damaged by the acid, severe esophagitis, a large hiatal hernia, she cried all day and all night--she was like a newborn with colic at one and a half. She had sinus damage leaving her with chronic sinus infections resistent to antibiotics, and she had had reactive airway disease. The most disturbing part for us was the stridor and the laryngospasms/apnea episodes because between the two complications she turned blue at least once a day. We were always rushing her into some urgent care or ER. She laid on the couch ALL day and ALL night crying not wanting to do anything but watch Baby Einstein DVD's. They saved our life because it was the only thing that made her stop crying temporarily. She had significant developmental delays as a result of how ill she was.

Given her circumstances at the time, I didnt hesistate to insist on a fundo. The docs agreed and we did it. What I didnt realize is that it was not a fix. I really thought this would fix her but sadly, it didn't.

About 2 months after the first fundo, it herniated and she had stridor and laryngospasms again. She continued to get sinus infections and lived in pain having a difficult time swallowing and being unable to burp. Since it was herniated and she had a retrn of all the symptoms, she had another fundo. We now know (even longer story) that it wasnt the right call. This time the side effects were worse--she got dumping syndrome and started to retch. The dysphagia got much worse. She still continued to live in pain and did not show a marked improvement until we completely removed the milk and soy proteins from her diet. All that time, she did not show allergic according to any skin test or RAST test. She did not show allergic in the original biopsies but when we removed it from her diet, she was a new child in days. I often times wonder if we did a fundo to stop complications that may have ben caused by an intolerance to milk and soy, not reflux.

I dont know if I am making any sense, I am really distracted by my kids at the moment! What I am trying to say is that at the time I didnt hesistate to think it was the right call. Looking back on things though, things could have been a lot different had we done then what we know now. My son has a lot of issues but we will not be doing a fundo/pyloraplasty on him anytime soon. If he was my first child I probably would have felt different. But knowing everything I know about the fundo now, and how frequently these kids have something else going on that complicates it (that is not treated by doing a fundo)--I would only do it if all other things fail.

BTW, I would be willing to bet that 123 times ina 24 hour period is under 8 percent. What was the percentage? This may be why the GI does not think it is so bad....8 percent and under is considered "normal". A good GI would hesistate to do a fundo on a child whose score is so low. After my daughters first fundo (before her 2nd--the one that the GI should not have ordered), her score was 117 times and that was 4 percent. That is considered normal, and one reason why we should not have done her 2nd fundo. Before her 1st fundo, it was 16 percent--(it was something obscene like over 300 times--very significant) so clearly the fundo stopped the refluxing. I guess that is what I am trying to point out--the fundo did what it was supposed to do but she was still really sick. Your child may or may not have anything else going on with him, but if he does (and a milk allergy is a red flag that he does) you will be disappointed with the results of the fundo. Anyone that says it is routine is wrongly mistaken--there is nothing routine about forever altering the structure of your child's stomach!

If the lung damage is serious, then I still would consider doing it. I would try to eliminate both milk and soy completely from the diet first--it should not take 4 months. I of course, would run all this by the pulminologist. The GI is probably telling you the worst case senario on how long it will take to see a result. I just want you to really know how serious the effects of a fundo can be and that it is not black-white or cut and dry on how it will effect your child. Many times it does things to your child that doctors cannot explain. It may fix the aspiration issues but if other undiscovered allergies play a role in this for him, it will reck whatever good the fundo temporarily did for him.

Thanks again. I talked to Melba19/Melanie for a long time today on the phone. I'm going to schedule an appointment tomorrow with a pulminologist. I'm also going to talk to GI doc to see about having other tests done for gastric emptying and blood/skin tests for the allergies. I'm also going to give it some time. I already had planned not to do anything until June 26...which is when we go back to see GI doc. I just want to be educated and know what I'm talking about before I need to make decisions.

I think that sounds GREAT. I am so glad that Melanie was able to help you, she is a wealth of knowledge when it comes to fundos!

I dont want to sound so discouraging and contradicting--it is just that I have learned over the years that so many times these uncontrollable reflux complications are associated with more than one thing. When this is the case the fundo is not effective. I just wish I had understood that 3 years ago. I just want you to be as informed as possible so that you can make a decision you are satisfied with---one that comes with no regrets!

Let us know how it goes....

And, keep us posted on this, we will be wondering about you!

I think that you are doing the right thing, I m glad that everyone was able to give you different takes on the situation, good luck. PLease let us know how it goes.

With the score of 123 was that the amount of times he refluxed in a 24 hour period, or was that his Boix Orchea score? My son reflux 156 times in 24 hours and 142 times of that was in 12 hours during the day, and they term this as significant reflux, but not enough to think about the fundo.

I am leaning towards the 123 as times refluxed??? My opinions would probably be a lot different if that was the BO score.



I called today and got more detailed results for Noah's pH probe.

He refluxed 150 in a 24 hour period.

His score was 124.

His longest reflux 2 hours after a feed was 24 min.

His longest 3 and 4 hours after a feed was 14 min.

He refluxed a total of 105 minutes during his probe.

His lowest pH was 1.3

As for the sleep study:

His first study had a score of 14.

His second score was 1.5.

ENT said the second score is still significant in that if he had enlarged tonsils and still had his adenoids it would be enough to warrant surgery. But considering he doesn't have anything else structually wrong as far as the ENT is concerned there is nothing else he can do himself.

He said he thinks maybe....that he may have a thin liquids aspiration problem. He told me to ask my pedi for a modified barium swallow. We are going to talk to them tomorrow morning about the whole fundo issue.

I am also going to ask them about the pulminologist at this point since ENT didn't really want to address that issue.

I think I may wait to bring up the DGE study until June 26...when we actually go back to see the GI doc. I don't want them to think I'm second guessing them and don't think they know what they are doing. I do think they have been great so far.

Just thought I would share my new information with everyone since I pretty much didn't know what I was talking about before. I guess I jumped the gun.

brandi

Thanks for sharing (((big hugs)))) as you make these big decisions. We know how difficult it is :(

I called today and got more detailed results for Noah's pH probe.

He refluxed 150 in a 24 hour period.

His score was 124.

His longest reflux 2 hours after a feed was 24 min.

His longest 3 and 4 hours after a feed was 14 min.

He refluxed a total of 105 minutes during his probe.

His lowest pH was 1.3

As for the sleep study:

His first study had a score of 14.

His second score was 1.5.

I think I may wait to bring up the DGE study until June 26...when we actually r go back to see the GI doc. I don't want them to think I'm second guessing them and don't think they know what they are doing. I do think they have been great so far.

Oh your poor little bub, a score of 124 is the highest I have seen, the number of times refluxed and the amount of time (2 hrs) refluxed is pretty standard, but the length of time the reflux was in his throat was very high. he is now on meds for this isn't he? I hope so.

I think you are right your Drs have been very good and thorough so far, but sometimes things like this are just out of their league, I am glad you are getting more testing to decided.

I am sorry I don't know much about aspiration but I do know it can be quite serious, so do whatever testing you need to see how bad it is or whether there is something you can do about it without the surgery.

In terms of the sleep study, to go from a 14 to a 1.5 to me says that the surgery worked in a big way. i was told anything under 1 was considered normal, over 5 they consider surgery and in between they wait and moniter. Again this may also depend on the part of the brain that is causing the sleep apnea, but if they think it is reflux related, then I am sure that it will be fine and no chance of him just stopping breathing and his oxygen hopefully is high.

Sorry I have to go, my kids are trying to play with the computer, you are doing a really good job in trying to sort this all out.

We are on Prevacid 30 ml, Reglan 2.5 ml 4x a day, Erithromycin .5/4x a day along with Zyrtec 2.5 ml....

But despite all of these meds he still seems to be refluxing a lot and he threw up 4 times today. It seems to be happening that he has a bad day every other day. Although....the day of the pH probe....was a "good" day. He only threw up 1 time that day.

I spoke with someone at PAGER today and she said she had problems with the aspiration but had never really heard of the child turning blue in places other than the lips. She said next time it happened anywhere other than the lips to straight to the ER. She also said we needed to see a pulminologist ASAP because a lot of times the doctors don't really realize how severe the breathing problems are until a pulminologist is involved. In her case, the GI and other docs were telling her to wait at some point when the pulminologist wanted her to do it. Eventually they all agreed...but point being he needs some other help whether it be a change in meds or something. It's getting worse, and we already knew it was bad.

Also, I didn't realize that sticking their fingers/fists in their mouths trying to gag themselves was an actual symptom. Noah does that all of the time and we just thought he was biting on his finger and it went too far. We always try to deter him from that, but now I just think....GOSH!

Thanks for your reply. I can't believe that's the highest you've seen. That's terrible. For a few days I was actually thinking he wasn't so bad.

Hopefully we'll get some answers tomorrow.

But despite all of these meds he still seems to be refluxing a lot and he threw up 4 times today. It seems to be happening that he has a bad day every other day. Although....the day of the pH probe....was a "good" day. He only threw up 1 time that day.

I spoke with someone at PAGER today and she said she had problems with the aspiration but had never really heard of the child turning blue in places other than the lips. She said next time it happened anywhere other than the lips to straight to the ER. She also said we needed to see a pulminologist ASAP because a lot of times the doctors don't really realize how severe the breathing problems are until a pulminologist is involved. In her case, the GI and other docs were telling her to wait at some point when the pulminologist wanted her to do it. Eventually they all agreed...but point being he needs some other help whether it be a change in meds or something. It's getting worse, and we already knew it was bad.

Also, I didn't realize that sticking their fingers/fists in their mouths trying to gag themselves was an actual symptom. Noah does that all of the time and we just thought he was biting on his finger and it went too far. We always try to deter him from that, but now I just think....GOSH!

Thanks for your reply. I can't believe that's the highest you've seen. That's terrible. For a few days I was actually thinking he wasn't so bad.

Hopefully we'll get some answers tomorrow.

I was just going to add that even though he is still vomiting if the crying, irratability, pain etc, the other signs of reflux are not as bad, then the meds are working good. These meds wont stop the vomiting, but will decrease the acidity of it.

I am glad you are going to see the pumlinologist, ours is fantastic, she also does our sleep and she is the best dr we have, she will go all out for us, which I love.

With the pH test, we are still working out all the scores, it has been a big subject of late here cause different Drs have different methods, so like I said the total time he refluxed was pretty average for here, but the 24 minutes is a really long time (the longest I had heard proir to this is 17min)- now he is on meds, he will still be doing this, but the meds will make it so that it is not burning, KWIM?

Let us know how the Drs go.

I am a bit frustrated! I went to see pedi today and I asked again to see a pulminoglogist. She is sending me to an allergist/athma specialist because she thinks he may be having both of those things....but said she felt like the allergist could deal with the aspiration issue! UGH! An allergist is an allergist...he deals with allergies.....not lungs and not breathing....

Am I wrong? I don't know. She spent a lot of time with me...like almost an hour and said I had a lot of really great questions and good points. She is ordering the modified barium swallow. She told me to go ahead and take him completely off of soy as well as milk. I just really wanted her to send me to a pulminologist.

Also, his lips turned a little purple while she had stepped out to go see another patient....and were back to normal when she came back in...he was actually asleep when she came back in. She went ahead and had the nurse do a pulse/ox on him. It was 96. They said that was good. I know when I almost passed out one time they told me anything below 95 requires oxygen. I don't know why they would be ok with that number....unless maybe I misunderstood the 95 rule.

I know I saw his pulse/ox go down in the 70's during his sleep study. But....of course, he has apnea!

Oh well, maybe I'll feel better tomorrow after talking with the surgeon.

She did say that the surgeon is very good and is very reluctant to do this surgery. He doesn't want to mess his statistics up by having a failed fundo....I guess that's good in a way. At least he's cautious and not eager to use the knife. She said if he recommends the surgery that should have a lot of weight in my decision. She said she has seen people having pneumonias and other issues and the surgeon has not wanted to do the surgery. She did comment on how bad his pH probe had been.

I guess that's all I have right now...just frustrated.

Hope to hear from you all soon!

Well, that is good about the surgeon part, keep me updated!

Sure...we're going there tomorrow morning!

Should I try to get a pulm appointment myself?

I would, if you can financially that is, that way you can get everything going.

Ok. I was on Parent-2-Parent and Candice told me to also see if the allergist thought I might need one. He might would refer me. I'll wait and see what the surgeon says tomorrow.

My mom is actually going to go with us to the doctor so that she can walk Noah around while Chad and I ask our questions with the doctor. Today was a nightmare at the pedi. Noah was crying and squirming all over the place because he was tired and bored. Good thing I had typed my questions up for her because I would have forgotten all of them with him acting like a crazy man. By the time he actually went to sleep we were practically finished. I don't want for the surgeon to not have my undivided attention at this appointment....

I have about 40 questions typed up....any important questions you would ask having done this?

Thanks-

-Why does he think your son is a good candidate?

-How many does he do a week?

-What is his success rate?

-How long has been performing them?

-Does he view fundo as a cure?

-What complications does he feel are common?

-How does he handle his patients post fundo?

-How many have been a successful for the reasons he is performing it on your son?

-Are there any other tests that can be tried?

-What is his method for fundo?

-What time limit does he give or what does he suggest you try before performing a fundo?

-Will he be the one doing the procedure and aftercare? (you would think he would but alot of times this isn't the case)

-What meds do they use post fundo?

-Which procedure does he prefer, open or laprascopic?

-What type of fundo does he prefer to perform?


Hmmm, thats just off the top of my head, I can probably think of more!

I made this list into a sticky, so you can find it at the top of the fundo section. We actually have many who have asked us this question.

Others who have had the fundo or met with a surgeon, please chime in and add to this list. If you would like, you can PM me and I will add your questions to the original sticky, or you can post it on the sticky if you prefer to (I think) ! Thanks :)

In situations like this I always use the, if this was your child what would you do?

Also ask what the side effects of waiting are and what the possibility of that is.

Good luck.

UGh!

I guess deep down we were hoping Noah wasn't aspirating and it was just our imagination that he was turning colors when he ate.

We had our modified barium swallow today and we watched him aspirate!

We are going to thicken to nector consistency. We have to work on keeping his head in a neutral position and also straw drinking. He drinks so fast he can hardly breathe....and probably is having oxygen deprivation while he's drinking that is contributing to the color changes because he doesn't really stop drinking to breathe. Also, we have to do an exercise with him to try to get him to lift his neck....

We are also going to have to give him lemon ice before feeds to try to get him to close his trach.

I really hope it works. Maybe now my pedi will send me to a pulm. I've begged for one and they've told me...let's just wait for the swallow test. Now we've done it and it better be top on their priority list or else we'll move on to ped #3.

I can't believe he's had no pneumonia's....although we've never had a chest x-ray. He sounds terrible now, but I took him yesterday and they said he sounded clear.

Should I ask for a chest x-ray? Is it possible for him to sound clear and still have a problem? The speech therapist said today that his congestion in large part was from his aspiration. She also said that it's probably been going on since he was 2 months....when I first saw color change...but thought I had put his diaper on too tight. How stupid of me!

Every instinct I've had so far has been right....and I won't start ignoring them now. Gosh...just think if I wasn't persistent!

Just wanted to update everyone.

Thanks for the update !

If he sounded clear at the doc then I wouldn't push for an X-ray... yet. Now, if you hear crackling in his lungs, or bubbles, I would take him at that time to catch it so you can have it on record. If you go in, though, and he doesn't that will be a negative pneumonia on his chart.

I am sorry he is aspirating, our son aspirated too, and had pneumonias many times before surgery.

Continue to go with your instinct!

It is totally amazing what Mummy instinct can do. I had the same reaction when I though he had apnea and they thought I was crazy but the testing showed otherwise. Funny enough it is that Dr who is my best Dr now, and last time she asked if I wanted a refferral to a neurologist for my sons twitching problem. I said to her- well all my instincts to date have been right, so I am not stoping now- she gets it!

I am so sorry that he is aspirating so much. I am not sure about the pneumnia, but I would say he would also have a fever and be lethargic if he did have pneumonia. My elder son had pneumonia earlier this year and we were admitted to the hospital for what they thought was a serious infection- I asked them to an xray cause of the chest- and it was pneumonia-5 Drs had listened to his chest and said there was nothing (and had decided it was more likely to be a potenitally fatal disease LOL), so I say it is possible for them to miss it, do what you think is needed.

Oh and say that too the, so far I have not been wrong on anything, please give me the benefit of the doubt.

I'm trying to stay away but evidently I was subscribed to this thread and it just recently woke back up and ended up in my in box.

This worries me.
When Eric was a new little guy I knew he was aspirating. I would take him to the doc and they would say things like "It sounds a little wet in there. Sounds like he may have caught a little bug". etc
Then from 6 months until now docs would say "He sounds all clear. His lungs are clear he's not aspirating."
So I stopped worrying about it. They weren't.

The last doc we saw said it sounded terrible in there and sent us to the GI.

Then the GI (2 months later) said he sounded clear (Eric was having a good breathing day), and asked me about his breathing and asked if I thought he might have asthma.

Anyway,
if it were me, and I had the opportunity and ears that were willing to listen.
I would check it out

Did he ever have a pneumonia?

It's funny because I was about to post a reply to Rachael a few minutes ago but my computer just spontaneously crashed for the 1st time ever! I had written about my sister and how sometimes our insticts are from God and all the doctors can be wrong....because the Lord is the great physician.

I had written about how my sister's 1 year old little girl wouldn't wake up. The doctor told my sister to give her 15 minutes to see if she would wake up and if she didn't go straight to the ER. She called me to come over to look after her 2 sons while they went.

A few minutes later she called back and told me Sarah was awake. They had decided to pray for the 15 minutes they were waiting. My sister's husband held her limp body while they all sat on the floor praying. No sooner could they open their eyes after saying Amen did Sarah wake up and say "Daddy, you have whiskers"....he has a mustache!

Almost a week later.....we found out that my grandmother who we thought had had a stroke had been diagnosed with Mad Cows Disease....I looked it up on the internet...she had all the symptoms. It's like 1 in 1000000. My sister, who is a lawyer, said she was going to get all the answers from the doctors....she was going to demand it. As crazy as it sounds, 10 minutes later she called me back and said that she had heard a voice in her head say "Didn't you learn anything from last week when Sarah wouldn't wake up....you call on your doctor's too fast....stop and talk to me!". I laughed. I've never heard voices per say talk to me like she has....but I do have insticts that I think are God given.

My sister stopped and prayed and didn't talk to the doctors. That day when we went to visit she was 90% better....she was able to pray with us and thank God for the good day we were given with her realizing it might be our last good day. Well. She went home a week later and is still living and still knows who we are. She is still a little confused at times, but it's been a miracle. No doctor can explain it.

So I think the devil was trying to keep me from posting this story for you ladies. I think that's why my computer mysteriously crashed as I was about to click post.

I know this story sounds crazy, but I think it's a blessing from the Lord that Noah is here....and has not had pneumonias. I'm still scared none the less that there has been permanent damage from his lungs. I'm sure he probably aspirates his reflux....which is acid!

I really don't know what to do. I wanted to see a pulm like yesterday! They had said the reason they were getting me into see the allergist/asthma specialist is because getting into see the pulm could take 2 months. Couldn't they pull strings if they know the kid is aspirating thin liquids which would include acid!

Hope you all don't think I'm a freak for sharing my little testimony. I truly believe in the power of prayer and sometimes the doctors just don't have the answers.

You are right drs don't always have the answers, I don't think anyone here will think you are a freak LOL, we have all been through such extraordinary things with our LO's I think whatever our faith we have all prayed at times. I know I have .

With the pulm, I would go to the dr and demand a referral, like I said our mummy instinct is something we should go with. Today my son wasn't feeling too well, all of a sudden. i am not generally a person who freaks out, but I said we have to go to the ER, so we did and he has 2 burst ear drums, he showed no signs previously, but I knew. Mummy instinct!

wow. I'm glad you went. How painful!

I figure on Monday I may ask to make an appointment and go back in and let them re-check him again. Plus, I have lots of new questions about the aspiration....

He really doesn't want to drink the milk now that it's thickened. I'm worried about his intake and him getting dehydrated.

He really hates to keep his head in the neutral position too. He gets so mad. I know it's going to take time, but in the meantime... I don't know what to do.

Also, the exercise they recommended...he will NOT do it. He screams and tries to roll over. I thought it was unrealistic when they told me to make him do it. He's 1 for goodness sake. He doesn't understand why we're holding him down and he doesn't know what we expect him to do either.

I want this to work...but today while I was feeding him...and feeding him the thickened food he still had blue lips. I know he must have still been aspirating. That concerns me.

He also feels rotten. We all do. My husband and I both have sinus infections...we just know immediately that we have them because we get them so much. I have no doubt Noah probably gave the cold to us. I'm still not so sure he doesn't at least have a sinus infection himself.

When he's sick like this it also makes his apnea so much worse. I was holding him last night and I can't tell you how many times I had to tell him to breathe. Which also tells me he wasn't sleeping soundly because he would hear me and react.

FRUSTRATING!

That is really scary, I know my son didn't have the apnea nearly as bad but I do remember the holding while he was asleep and counting the breaths.

Do you have an apnea moniter? I hope so, if he is having that many periods it needs to be monitered.

I so hope the thickened feeds help, my son would never take them if I tried. If it isn't one thing it is another- good luck with your appointment- I hope you are all feeling better soon.

Thanks.

We don't have a monitor. They have always told me that he self-corrects. They also said he would just pull it off if we tried that at this point. Who knows. Maybe I should be persistent about that as well.

Thanks about the sick part...It always seems to happen on the weekends!

Read my post in questions, questions, questions. I don't feel like retyping it all. :)

What did you do since he wouldn't take the thickened feeds?

If you are worried there is a moniter that a lot of girls here use it is called an angelcare moniter, it has a sensor pad that goes under the mattress. It senses movement and if the child stops moving/breathing for 20 secs it will beep, it is a sound moniter as well. There are no wires to the child, just under the cot, it is something to think about.

I was B/Feedng so I had to express, then thicken and try and feed him a bottle, it was a disaster so I didn't proceed. I just continues to B/F. He used to struggle but eventually he would get enough in. i B/F my first son for a long time it was so relaxing and such a bonding thing, but with Parker it was really hard to do cause of all the issues.

I just wish I knew then what I know now, I think I would have done a lot of things different- I just was so unaware and nobody told me anything- pretty sad really. I am so glad I found this site when I did, my dh asked me the other night what I think we would be doing if I hadn't found it, I said I would have been committed to a looney assylum, and I was serious! I had Drs telling me that it was all my imagination and that he was fine, and that no baby past one has reflux. Well we sorted that out LOL.

Thanks. Where do you get that angelcare monitor?

I know...Yesterday I actually laughed and was happy when I saw him aspirate! How sick is that.

I was just so happy to know that my eyes weren't playing tricks on me and that he really was having episodes where he turned colors. I was glad that even though I had doctors telling me it didn't really completely sound like aspiration because his nail beds, tongue, and gums weren't turning blue....

My take on that....is that Noah has never been typical.

He defies all odds. That's part of what is so scary.

Noah cut off the b/f at 3 months and got his first tooth at 3 1/2. It's also when his congestion got out of control. Looking back...he probably didn't want to have to work so hard for the food and he's such a fast sucker that he was probably not being satisfied. I don't know. I miss it and I tried to start him back at 4 months....but he would have nothing to do with me. I had enough saved to get him to 6 months and I'm thankful for that! That's one good thing he has in his court.

That is definately a good thing that he had. Yeah drs get me too, they just don't listen, I mean I think you could tell if he was going blue, expecially with the frequency!

I am not so sure where you can get the moniter but I am sure that any department store like target would have it, also on the internet. Tomorrow I will look around for it and get you a link, I have to go to bed...so...tierd!!! It has been a long day (Its nearly midnight here)!

Have a great day.

http://www.amazon.com/exec/obidos/tg/detail/-/B0000CEDRO/qid=1150630447/sr=1-2/ref=sr_1_2/103-2041928-2880652?v=glance&s=baby

This is the moniter I was talking about, I am sure you will be able to find it at most places.

Did he ever have a pneumonia?

Nope, no Pneumonia.
No infections or anything. Just 3 run of the mill
colds his whole life. (although they last for a lot longer than normal)
I practically keep him in a bubble. I don't know if this is why, but I DO know that we've been very lucky.
I honestly don't know how he made it this long without getting anything, at least not that we ever knew of.
Eric also has low IgA which makes him more susceptible to infections.
I think it's just a case of "God only gives you what you can handle" He just knows that I can only handle so much, anything beyond colds would break me. LOL

I hope the thickened feeds help. Thickening really helped Eric out. He ate much more smoothly and his choking and blue spells cut down dramaticly

Noah is still having blue lips even with the thickened feeds.

:(
(((big Hug)))

Thought maybe youd like this link

http://www.wrongdiagnosis.com/sym/blue_lips.htm#possible