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May 12, 2009
johnniesnewmommy
finally got to GI and so many changes
Hi Everyone, I finally got Johnnie to the GI today (got in on a cancelation) and he wants to put him back on Reglan (he had a hard time with it to begin with) and on Protonix compounded. He also wants to change his formula from Nutramigen to Neocate. My question is would it be smarter to wait to change the formula until he has been on the new meds for a while so I will know if he's having reaction to the meds or the formula? What would you do?
May 12, 2009
jeddsmommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
I'd start with the med changes first and give them up to a couple of months to see if they work.

Can I ask why he/she thinks a compound will be better??? They tend to be less effective than other meds. Esp. if they are not made right, they are not as stable. The only reason we used a compound was because it had to go down Jedd's feeding tube and all the other meds we tried wouldn't fit. so, we had no choice in the matter.

May 12, 2009
mommato3
Do I remember right from your previous posts--Wasn't he aspirating reflux so you thought? Is so, I would say giving Reglan another try would be justified. I don't know much about Protonix. Well, you could wait to start the formula but remember you will have to wait 2 weeks b/c it will take that long to see about the meds. It would be really unlikely that he would react to the Neocate and I would think that a reaction from that would be different than one from the meds. Also changing to an elemental formula-we are on elecare- made such a HUGE difference in my son that I would almost say go ahead and start it ASAP. That is a lot of changes though but at least you got some new things to try. Let us know how all the new stuff is going.
May 12, 2009
johnniesnewmommy
I really dont know. His insurance wont pay for the solutabs and he wont take the capsules broken up on his food. So I guess they think the best alternative is the compounding. I really don't know what other options there are so I dont really know what to argue for. I think nexium comes in a powder you add to food but im not sure.
May 12, 2009
mommato3
I guess I posted at the exact same time as Jeddsmommy. She has a good point though. If you make all the changes at once and things start going much better-how will you know if it is the meds or the formula? There is no since in buying expensive formula if it doesn't help and there is no sense in medicating if it doesn't help. Hum, well maybe just do the meds and then try the formula later so you will know what is working best. I just know that the formula change really helped my little guy.
May 12, 2009
johnniesnewmommy
He does aspirate non stop! They are waiting on the swallow study to decide if he is doing it on swallowing or just from reflux. If he is doing it from swallowing then I think the next step is a feeding tube -is that right? I keep hearing them talk about the fundo but I am hoping to find another solution. We are on our 5th pneumonia in the last 5 months even with all the precautions and NEVER laying him flat! I probably will just go ahead with the formula- I was just worried that if he refused to eat that I wouldnt know if it was because of all the meds or the new formula. He is pretty picky and so little- less than 4% on weight chart.
May 12, 2009
mommato3
Nexium does come in powder and my insurance pays way more on Nexium than they do on Prevacid.
May 12, 2009
mommato3
Well are his liquids thickened? Some kids aspirate on the swallow only on thin liquids but don't aspirate on thicker (nectar or honey) consistency. The swallow study should show that as they should have had him eat several consistencies so b/f doing a tube they may make you change the consistency of his food. If he aspirates on all consistencies, then they may talk tube with you. If he aspirates on his swallow, then a fundo won't do any good but if his aspirations are from the reflux then they will prob. mention the fundo to you due to aspiration. There are other things you can talk to them about though. They have mentioned a fundo to me about my son but since my son doesn't aspirate (they only found minimal traces of aspiration on his bronch) then we are staying clear of it. Also have they done any type of emptying scan to see if he has delayed gastric emptying? If the Reglan helps you will know he may have some delayed emptying. Make sure they check that out before they even consider a fundo. Also you can try a drug called Erythromycin (ours in the brand EryPed) if the Reglan doesn't work. It is an antibiotic but given in small doses has the same effect of empyting that Reglan has. I am so sorry you are going through all this. Having a child aspirate is so scary.
May 12, 2009
mommy2k
I remember reading your posts and I'm so happy to hear that you got your little guy into the GI. I don't have any good advice but I wanted to wish you well. I hope that you're on the road to some much needed relief with him. Good luck and lots of hugs.
May 12, 2009
johnniesnewmommy
We are thickening 50/50 with rice cereal- tried to use oatmeal but he didnt take it as well and ask ped about simply thick and they said no stay with rice. He had an upper GI and with only 1/2 ounce of barium he aspirated back up into his lungs so we know for sure he has reflux- but we havent been able to get any more tests run yet to check for anything else. The swallow study is next Tuesday and Im praying that he is not doing it when he swallows too but I think he might be because he sounds like he chokes when he is drinking -like you would if you swallowed a bunch of water in a pool.
May 13, 2009
kubicki5
Julie - I have three children. My youngest Katie is my refluxer. My first Ben was very colicy and is ADHD. My middle Jakob is pretty easy going. Katie had it bad as a baby no sleep for two years. She was on Nutramagin, Prevacid and Zantac. Thought we were through it but after age three it came back big time. After her scope she was put on Prevacid 45mg a day and mylanta as needed. Scope was in Sept. Showed damage in stomach and espophogus. It took about 7 months of medication and Reflux diet for her to start feeling better.
Hi there. I just wanted to send you some big cyber ((HUGS)). I am so happy that you got into the GI earlier. I hope these changes help your little guy. He is so lucky to have you.

BTW I have so much admiration for jeddsmommy. I would connect with her as much as possible. Lots of experience and knowledge there.

May 13, 2009
mommato3
My little guy chokes too while he takes his bottle but he doensn't have a swallowing disorder just all that reflux coming up the same time he swallows so he gets chokes.
May 13, 2009
jeddsmommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
If they are aspirating from above they won't necessarily need a feeding tube. You can do thickened feeds with Simply thick or Thick It to help. most kids only aspirate when swallowing thins. So thickening would work.

As far as aspirating from below, well, my take on it is this, I'd do everything medically possible before doing a FUNDO. This would even included a feeding tube. JMHO but that's what I would do. A feeding tube (even a G tube) can be yanked and all done with it a FUNDO is a permanent thing and cannot be undone. KWIM???

I'd go with temporary over permanent any day of the week. LOL

I only mentioned doing meds first because Nutramigen is a pretty good broken down formula. No need to mess with that yet. I'd only mess with formula IF you think allergies are causing the GERD. Then you need to try and figure out which one would be the best.

For us, we just stayed put on Alimentum for a LONG time. It didn't matter that he was a HUGE puker. We stayed with switching meds not changing around formulas and messing up his GI tract even farther.

FWIW alot of kiddos that are bik vomitters, they normally have delayed eptying so starting a motility med can help. Once we found the right balance between a motility med, and GERD meds combined with AGE we saw a HUGE difference. Also add in (real foods) diet control. Then we REALLY saw a lessening of vomiting.

BTW that took about well, almost 2 years to get under control. Now he does really well. We can go, dare I say, it.....everyone KNOCK ON WOOD right NOW!!!! We can go a week sometimes MORE without a puke. WHOOHOO for us!!! That's huge for us. It really is.

Once he hit 11months we started shopping around for a big boy formula. Pediasure was a nightmare. We ended up on Peptamen Jr. It was a FANTASTIC next step formula. Worth it's weight in GOLD!!! LOL

I would really consider adding in a Pulmo at this point. They can work hand in hand with the GI (well, they should do that) and try to get the GERD under control.

Have you had a Bronch done yet??? It would be worth it to see what and how much damage is being done.

Our general rule was this first and foremost....a FUNDO was and is a last resort when all other means have failed.

Don't get me wrong, when needed a FUNDO will and can save lives. When it's needed, it is a GREAT tool for GERD. It's just not the quick fix some surgeons make it out to be.

Also, if delayed emptying is an issues....then...a FUNDO and motility issues REALLY don't mix well. Alot of kids with motility issues have many MANY complications from the FUNDO.

Imagine this, you belly is full, you really need to puke but it can't go up and out, it won't go down and out fast enough, how would that feel?? Most of the kids like that end up retching and retching until they loosen the FUNDO and then you are in a worse state then you were before.

Really, I'm not anti FUNDO. I'm just saying, go into any surgical meeting informed of ALL your options first. Surgeons like to do surgery, it's why they became a surgeon after all..

We sat across form a surgeon and told him NO. It can be done. After about 6 months we saw the surgeon at the hospital while there for a visit. He remembered us and commented that Jedd looked really good and was doing well. He told my that we had made the right choice, he could tell by how well Jedd was doing. Jedd just needed time, and since we allowed him that option, it was a win win situation for all involved.

May 13, 2009
jeddsmommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
Julie
Thanks. I appreciate that I just really try to make others roads a little less bumpy since we had a HARD journey. There are times when I think, If I'd only known then what I know now....Jedd's GERD would have gotten under control MUCH faster...:-( Makes me very sad that he had to suffer due to an incompetent GI.

but, I can't dwell on that. It all worked our for good.

Off to the park with my little man, HTH.

May 13, 2009
johnniesnewmommy
Thank you so much! I have been trying to get him to take the neocate all day and he hates it so I think its just to much so Im just going to stick with the nutramigen until we see how he does on the new meds. He was pretty miserable tonight with horrible stomach cramps but I think that's the Reglan. I'm hoping that will get better in the next few days as his body adjusts. I totally agree with the waiting on the Fundu until all else fails. I really think he has something else wrong that prevents him for emptying fast enough because he has always been so constipated. He is on Miralax now and it helps so much. I know the Reglan is supposed to do the same thing but last time he was on it he got so constipated the doctors had to go in and clean him out because even the suppositories wouldn't go in. It was horrible! So that is something the GI said he will look into as soon as he gets the swallow study done next week. Where do you find the Peptamen Jr formula? I have been begging for a pulmo but again they only have 1 group in the state and they are really only taking on cystic patients. We have very few ped specialists here. So his ped said they are ordering the bronchoscopy but haven't had it scheduled yet. Just a note- they took him off all meds on Friday and by Sunday he had pneumonia again! Obviously a sign he needs something. I just want to say thanks again to everyone for being so wonderful and supportive. This is so hard anyway I cant imagine what it would be like without having others to bounce this stuff off of!
May 13, 2009
jeddsmommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
WOW what a clear "sign" that the meds are doing something positive....I'd for sure keep them on board if you saw a difference in a few days...i.e. the getting pneumonia shortly after coming off meds.

Have you had an UGI done yet??? That can show the anatomical parts and if they "grew" properly. for instance, if there is anything unusually in the manner of the intestines. Like malrotation...ect....Just make sure they do the UGI And follow it through.

May 14, 2009
johnniesnewmommy
They did the UGI a few months ago but stopped in the middle because he was aspirating during the test with only a small amount of barium. The GI said he would re order a new one to make sure there is nothing wrong with the lower portion as well.
Check with your
doctor first!