Need suggestions

[Anonymous]

I haven’t posted in awhile, and a lot has changed with DS, but we are still having issues. A lttle background info..DS is MSPI with reflux has been on Neocate and Zegerid w/tums for awhile (at least 4 months), started off EBF then Ali RTF both causing blood in stools and bloody vomit for the 1st 2 months of life. We also tried Prevacid with little improvement. (All meds at Marci levels) We continue to have issues with feeding, one day comfort eating, the next bottle refusal, and daily diarrhea(8-10x/day yellow/watery stools). He has reacted in some way or another to EVERYTHING we have given him. We even trialed erythromycin to see if speeding up things would help lessen reflux symptoms and wheezing and he ended up with bloody stools again.

So, he was skin prick tested 3 weeks ago. He is + for milk, soy, corn, rice, oat, wheat, and some enviro things. I know his Zegerid has corn derivatives in it, but without his Zegerid I think he would be even more miserable. Anyone elses LO allergic to life? If so, what on earth do you feed them or what have you done that works?

Also, he has aspiration issues and wheezes daily along with occasional stridor and laryngospasms at night. We see Pulmonology again tomorrow..

Our GI suspects EGID, but will not scope due to him being on an elemental diet. She feels that he is being treated already for any of the EGIDs, inflammatory bowel diseases, etc. So scoping would not change her plan either. Oh, and also he isnt losing weight, so theres another reason to not do any more. He is miserable at least 50% of the time! I don’t know what else to do. HELP!

jillynjacksmom2009-07-01 13:28:30

[Anonymous]

Poor little guy!

HUGS

I know how you feel(kinda). My DS was BLOOD tested around 3yo and it came back + for almost everything. I about DIED! Then we went to see an allergist and they did the skin prick(which is most accurate) and he was only allergic to eggs.

Are you Dr’s comfortable w/him on Elecare? Elecare contains corn syrup solids, which most Dr’s say you can’t react to even if corn allergic…BUT… There was a Mom(Alexis’s Mom) on here whose DD was reacting even to the corn syrup solids. She had to be on a special formula(by ROSS, I believe). Here’s a link where she talks about what she did…2nd post down. https://www.infantreflux.org/forum/forum_posts.asp?TID=11324&KW=ross+formula+corn&PN=2

I think it contains soy though. 🙁

I know there are some soy/milk free options for foods…Here’s the link

https://www.infantreflux.org/forum/forum_posts.asp?TID=2718&PN=1

Not sure what formula would be best though?

HTH! Good Luck!

[Anonymous]

Well, we are trialing Elecare now in hopes that since its made a little differently (and has a little less corn syrup)there would be a different reaction than Neocate (I’m not convinced, but was willing to try). He’s never tried soy, just avoided since most kids that are milk allergic tend to be soy reactive as well, then we tested + anyway. They are totally against trying soy at this point and always say to give things more time. I’m not sure where they are going to go after this if anything because he isn’t FTT. The thing that is baffling is that he is maintaining weight, and there have been comments like he must be tolerating it somehow if he’s not losing weight. Something has to be going on to have this much stool though. I haven’t even intro’d any solids because he’s never truly been at a “normal” baseline. Our GI feels that if we try solids things will be better. I’m so nervous about reactions so I haven’t yet. I know the only way to find out is to try, but it takes sooo long to get him feeling better after trying something new that I just cant bring myself to try it yet. If I do, what do we try first? I was thinking about squash or carrots??

[Anonymous]

Oh, so he was already on Neocate before Elecare? That’s so hard b/c most formulas you can find have corn/milk/soy in them. I would ask to see a nutritionist and see if they can offer any advice(or even find) a formula that wouldn’t contain any foods that he’s allergic to. Maybe even they could give tips on “making” a formula for him that doesn’t contain those foods(Like Sue had to do for Taylor).

I don’t necessarily think that solids will make things better, at all. A little guy having that many allergies already, probably also has intolerances to other foods. It’s best to hold off a few more months…JMO

Once you do decide to start foods, it’s all trial and error. Certain foods that worked best for my DD may not be best for yours, KWIM?

The good thing is that he’s not FTT.

“We continue to have issues with feeding, one day comfort eating, the next bottle refusal, and daily diarrhea(8-10x/day yellow/watery stools). He has reacted in some way or another to EVERYTHING we have given him.”

Based on that sentence alone, I’d say he is reacting to the corn in the formula. Hopefully someone else can chime in w/some suggestions for a different formula. Also, have you thought about enzymes? They seem to really help food allergic/intolerant LOs. Maybe something to consider?

HTH!

[Anonymous]

You know…There is also Nutramigen AA now(like elecare & neocate). The only problem is that I can’t seem to find a list of ingredients. So, I don’t know whether or not that also contains corn. Hmmm…Maybe someone on here who has a LO on it can chime in!

[Anonymous]

Nope..looked it up too. It has the most corn out of all of them. Thanks for the responses. I called Cincy Childrens to make an appt with their EE clinic to see if they can help us. Just waiting for a call back now.

[Anonymous]

We go to Cincy next Thurs. to meet with Dr. Putnam, for GI, but he is the guy for EE there. My son has food intolerances as well as severe GERD and DGE. Have they done any other testing? We had a really big workup done at Cincy as well with another dr but we are transferring to Dr. P. our last dr want to do a fundo which I am horribly against especially with his DGE so I am hoping Dr. Putnam will be as great as I have heard he is and give us some more options. Dr. Putnam is now booked up until Sept. I got in very quickly though. The squeaky wheel gets heard pretty quick there so keep calling if you aren’t happy with the time they give you.

[Anonymous]

What? The GI won’t scope because he’s on an elemental formula? That’s rediculous!! Sorry, not scolding you – just can’t believe the GI!! My daughter has been on an elemental diet since 12 weeks of age, yet she had horrific GI symptoms. We sought out a top ped GI and he readily scoped her (just before her 2nd birthday), and found massive amounts of inflammation, erosions, puss-covered ulcerations, etc. DESPITE an elemental diet. He immediately put her on a higher dose of Prevacid and added Entocort – a prescription steroidal GI anti-inflammatory, usually used in Crohn’s or ulcerative colitis. We saw IMMEDIATE improvements, after adding the Entocort! The first night, she slept through the night, and she hadn’t done that in the entire year previous.

My BEST advice:

Are you using probiotics? If yes, then I would recommend increasing the dose – at least doubling them, or more. If you aren’t, then I would start right away. We saw some big improvements once going on good doses of hypoallergenic probiotics. You want to be sure to use one that is milk, soy, corn, etc. free. I know Laura (hellbennt) has some info on hypoallergenic probiotics that she can cut and paste in here – could you do that for me Laura?

IMO, Your baby needs to be scoped. Doctors have got to take this seriously. If they had an adult in their office with the symptoms your DS has, they would scope and treat in a heartbeat! Our babies shouldn’t have to suffer while the medical profession sits back saying “we’ve done all we can, they’ll likely outgrow it”. Where are you located? Would there be another ped GI who would be willing to scope and treat him?

[hellbennt]

Probiotics, brands used: https://www.infantreflux.org/forum/forum_posts.asp?TID=8970&PN=1

[Anonymous]

Thanks Sheri and Laura. I don’t use probiotics at the moment but did in the very begining after reading about them on here. I couldnt tell that they were doing anything at the time because he screamed 24/7 no matter what we gave him. I will try them again now that he’s more calm.

DS saw the pulmonologist today for the 2nd time. He now wants to scope since his respiratory issues are still present. DS actually had one of his episodes in the office! (Not excited about him having episodes, but finally he was able to PROVE himself and show the Drs that I’m not crazy. You know how it is..everytime you take them in complaining about issues, they sit there and smile at the Dr!) I purposely didnt give him any treatments today either so they could see what he’s really like. Pisses me off that I have to make him even more miserable to prove that the meds THEY prescribe we are using correctly and he DOES need them. Frustrating… Anyway, pulmo Dr said that DS has laryngotracheomalacia, but is still really concerned that his chronic reflux aspiration IS causing lung damage since he is so dependent on the albuterol. (Last visit wasnt too concerned and wanted to just wait and see what happened with the increase in Zegerid. Thought things would get better with that. Didnt feel that the wheezing at that point was harmful) He is also going to talk to our GI about scoping at the same time. I told him that she did not want to, and he said “thats fine if she doesnt..I’ll consult with one of her colleagues that will! He has dealt with things for long enough, we need to make sure that there isnt anything we’re missing. We can not assume that everything is going to be textbook, and just because you take all the allergens out of the diet(EleCare), doesnt mean that there could be no more issues!” I think I found someone on my same wave length. When I left he was on the phone arguing with GI….

EDIT: Sheri, what did they end up diagnosing your DD with in the end? How is she now?

jillynjacksmom2009-07-02 17:12:11

[Anonymous]

My daughter is a little complicated. She doesn’t have a cut and dry diagnosis, but her GI would likely refer to it as “enterocolitis”, meaning inflammation of the small and large intestine. At the time of the scope, she had erosive esophagitis, erosive antritis and erosive duodenitis, as well as reflux/GERD. She is doing a lot better now, but still requires prescription medications to keep the inflammation down in her gut.

I’m so happy to hear that someone is finally taking your little guy’s situation seriously! I really hope they push forward with the scope for him!

[Anonymous]

DS had his scopes done yesterday. Pulmo said the vocal cords, larnyx, and lower airways were swollen/inflamed, the lung tisssue was friable, but didn’t bleed when he suctioned(meaning not enough to classify as asthma) His thoughts were the that damage is reflux related. He confirmed laryngomalacia, but the trachea was fine, so no tracheomalacia as thought before. Said his larnyx was “pretty floppy” so he feels that his night time episodes are indeed laryngospasms. He can’t confirm aspiration until the lavage(wash of the lungs) comes back next week to see if there is fat in it. He feels like we need to look deeper into the allergy component and suggested a Dr at Duke. (He is going to contact our allergist after all the results come back)GI said that everything looked normal, some mild esophagitis, but will know more when the biopsies come back next week. She said we might need to trial a different PPI as there is still some uncontrolled reflux causing damage, mentioned nexium, but didn’t want to change anything until all results are in to see if there are any eosinophils. Other than that she didn’t have a clear answer as to why he’s having breakthrough acid damage. (She made sure to tell me that he wasn’t losing weight, and was on a “massive” dose of PPI)It did not look like crohns or ulcerative colitis, but won’t know for sure until biopsies confirm. If his pulm lavage is + for aspiration, we need to look into a nissen.

So the kicker, when I got back to him, the nurse was feeding him UNTHICKENED diluted apple juice! I had a mini panic attack and snatched the bottle, and provided some polite education for her about multiple food allergies, how juices and reflux don’t mix, and aspiration. She hated me..oh well….

DS did great overall, but was pumped so full of air during the procedures,so he was up most of the night with gas. Now comes the waiting part…I hate waiting!

[Anonymous]

Just an update…the bronch fluid came back with lots of fat which means he is aspirating. The culture also grew pseudomonas. (the 2 together, fat and this specific bacteria are common in cystic fibrosis, so he had a sweat chloride test which was neg thank god!) He was started on qvar and zithromax. The GI part showed mild esophagitis, chronic gastritis, active colitis, and elevated eos in the colon. Since he’s been on an elemental diet they feel like the results are skewed a bit, but are going to treat him as if he has eosinophilic esophagitis and colitis. We have since seen the allergist again and skin prick tested the simply thick, elecare and zegerid/tums. He was pos to elecare only! The allergist feels that since he has reacted to every formula on the market, as long as he is thriving, we will continue with elecare. GI agreed. The qvar should help with the symptoms. We talked about a fundo and pulmo feels like we have time to wait on it. He is showing no outward signs of pneumonia at this point even though his cultures say differently, and hasn’t had frequent lung infections as of yet, so as long as that doesn’t change he won’t have to have surgery. We also did a trial of nexium to see if that might help, and within 3 days he was back to arching and refusing bottles. So Zegerid it is. I’m not sure if its the extra tums buffer or what, but didn’t expect things to go downhill so quickly! He’s still hoarse from that mishap, but back to baseline. So, anyone outhere with EE or EC?

[Author]

Posts