Braydon started taking a turn for the worse on Sunday after they increased the rice cereal in his Nutramigen formula. GI doc now feels he is having an allergy to the Nutramigen formula. He is now actually throwing up (which he has not done before) and is also refusing his bottle now. He is going to have the sigmoidoscopy on Wednesday am at Children's Hospital. My daughter is once again at her wit's end. Thank goodness her husband is on "family leave" with her to help with the baby now. I am so worried about both my grandson and my daughter (lots of stress). If he is allergic to the Nutramigen, they will put him on the Neocate. My question is, if it is an allergy, will the Neocate help him to improve pretty quick? He is now on Day 11 of the Prilosec and Carafate (also thickened bottles). He is definitelly getting worse. The doctor feels that since we are thickening the formula even more now, that it is staying down in his tummy longer and therefore, he is now vomiting and refusing to eat. I feel so sad for him having to go thru this. :sad4:

I am so sorry you are all going through this. It is awful. Thickening can sometimes make things worse, such as increasing coughing. Maiya gags so much now , since we thickened. The rice cereal makes some babies very gassy and so I opted for oatmeal. And not all cereals are the same- some gave her more gas and constipation.

Please let us know how you are all doing



Take care

jojo

Thanks, JoJo. Braydon is coughing and choking a lot more since they increased the amount of cereal in his formula (We asked about the oatmeal instead, but ped said no way). Do you know anything about Neocate? Did Maiya ever have to be put on it? She sure is a cutie pie. I don't have a scanner on my computer so I can't put Braydon's picture on; but, I think he is going to be a "lady killer".

Hi there, I am really sorry I haven't been on much lately but I was just reading and am not too sure of all the details so don't beat me if I am on the wrong track, but if he is being put under for the colon, you should ask about the endoscopy (takes about 15 minutes) and also a pH probe, which they can insert while he is under. I just think if he is getting put under, why not get all the tests done and then you wont ever have a oh now we need a probe....

If this is totally not relevent please disregard this post, I hope all goes well with the testing and your daughter will get some answers.

I agree w/ Rachel. The sog is generally done if there is blood in stools, Evan had one last monute w/ his scope. He was on Neocate and now is on Elecare instead. It helped a lot!

My son Connor did horrible on Nutramagin and Allimentum. He didn't have any blood in his stools but would scream and have horrible gas and diarrhea. His Gi put him on Neocate and it made a world of difference! Netramagin and Allimentum still have small traces of milk protien in them so if Brayden has MSPI, he could still react. Neocate is an amino acid based formula and doesn't contain any dairy or soy at all. I noticed a difference the same day we started it but if he has inflamation it could take two weeks to a month for you to see a difference. I agree with the others about doing the endoscopy while he's under. We did that when COnnor was put under for a bronchosopy (scope to look at his lungs) His GI came and did a scope since he was already under. I hope things improve for you guys I know how hard it is and how stressful. He'll do great with the test! Try not to worry to much. The hardest part for Connor was not being able to eat. Please keep us updated and if you have any other Neocate questions feel free to ask me:D

No, he is not being put under. I wondered about this myself, but apparently the GI doc must feel pretty strongly that it is "allergy related". Have any of you heard of something called eosinophilis esophagitis? Apparently from what I understand, it "mimics" GERD in both children and adults, and it is totally allergy related. Anyone have any info on this? And apparently it does NOT get any better with medicines used to treat GERD. It is treated just like any other allergy - that is, by removing the offender. HELP

No, he is not being put under. I wondered about this myself, but apparently the GI doc must feel pretty strongly that it is "allergy related". Have any of you heard of something called eosinophilis esophagitis? Apparently from what I understand, it "mimics" GERD in both children and adults, and it is totally allergy related. Anyone have any info on this? And apparently it does NOT get any better with medicines used to treat GERD. It is treated just like any other allergy - that is, by removing the offender. HELP
Menfuse (Melissa) little girl has it and she is very knowlegable! Hopefully she will chime in or you could pm her. I've been wondering if Connor might have this too.

Kim - How do I get in touch with Menfuse?

Kim - How do I get in touch with Menfuse?
Do you have the ability to private message yet? If not I could send her one for you. If you go up to the private messages box in the upper right hand corner of your screen and click on it then go to send new message then when it asks for recipietns name put menfusse and add a title to it under title. Let me know if you need help:D

Kim - Thanks alot.

Anytime :hug: I'm glad I could help!

I am really unsure now, EE and EGID is determined through a endoscopy I thought. They take biopsies from the esophegous and if these contain eosinophils then you get your diagnosis.

From what I know they are allergies to large proteins, like milk, eggs, soy, meat. For the test to be accurate, the more exposure the better, so that the body makes these eosinohils that determine the diagnosis.

The smig, is a colonoscopy I thought, I can not see how they could do this to a child while not under an anesthetic. There is prep too, the colon has to be clear, so they have to drink fluids that clear them out.

Melissa (menfusse) knows a lot about it, so too does Carla.

The way to treat EE is a strict liquid only diet, till everything settles and then introducing foods very slowly to see which one reacts.

Let us know if this is the test I am very interested to know how they are going to do it.

Rachel - They are definitely doing the smig test. They are telling my daughter that he will not be under and that he won't really feel much more than if he gets his temperature taken. They are also going to "snip" biopsies while they are in there (his colon). They told her there is no prep other than not to feed him for about 1 hour before. The test is to be done at Children's Hospital in Dayton, Ohio. What do you think? HELP!

I think that a Childrens hospital would be doing it right, maybe it is because of his age. It makes sense that if there are Eosinophils in the espophegous then they would be in the colon too, maybe this is more accurate in Little ones. And why they are doing this one instead of the endoscopy. It is great that he doesn't have to go under.

The biopsies are so that they can count the number of eosinophils, a higher number will make the EE diagnosis.

I wish I could help you more, but I am really sketchy about it, we have been tested and are clear, but my GI is now talking about doing another one in case he hadn't been exposed to enough stuff and it may not have shown.

Good luck. I will pm Melissa and see if she can look in on this thread for you.

Thanks, Rachel. I really appreciate all your help and concern. I will keep you posted as soon as we find something out.

I don;t have a whole lot more to add but, I'm curious, if they think it is allergy related, why they had you thicken with rice cereal? There are some hypoallergenic thickeners out there, like Simply Thick. Have they considered the possibility of the rice?

Mirra - Beats the heck out of me. I told my daughter to suggest that to them also; but the GI nurse said that was probably not what was causing it. It would seem to me that would make sense since a lot of this started when we began to thicken his formula and "especially" when the GI doc had us double the amount of rice cereal we were using in his formula. But then what do I know! Buy the way, Mirra, where do you buy "thicken it"? Thanks for your help.

Just wanted to let you know that I read a study that said that thickening can cause increase in choking and therefore is not appropriate in all babies.

As far as I know there are two thickeners out there. Thick It you can get ordered from a pharmecist, BUT everyone I know as dealt with major poop blow out with that so I'd recommend not using that one, lol.

The other is called Simply Thick which is really nice, but a bit expensive.Some pharmecies carry it, but you can order it online. I think they have a $10 sample pack. It doesn't have a whole lot in it, but it would give you a few days to try it out before buying more. www.simplythick.com (http://www.simplythick.com)

One other thing to add to what Jojo said. Thicking is a doubled edged thing. It can be very helpful for keeping the fluid down. We had to use it because Mason was just choking way too much. BUT, the thicker it is, the more air bubbles it traps which can lead to some pretty bad gas pain. So you kind of have to weigh the lesser of two evils. Incidently, Mason screamed like crazy when we used rice to thicken which is why I thought of it. Sometimes their tummies are just not ready for it at that age I think.

One bad thing about reflux and other tummy problems is that it's like a giant puzzle that has to be sorted and it takes time. In the meantime you've got a miserable baby that you so desperately want to help. It SUCKS! Mason had a lot of gas/air problems in addition to his reflux and it was so hard to tell what was what. Are you dealing with gas at all as well?

Bottle choice can also make a huge difference and I have found all babies are different. We had the Dr.Brown bottles which most people swear by. At about 2 months of age, Ginette (another forum member who had been dealing with the same thing) recommended I try the Playtex Nursers with the LATEX nipple. And it made a HUGE difference. In fact, lately Ihave been trying to get Mason to use a paci and I just noticed the other day that it was a silicone nipple. So I saw a latex paci at the store anf bought it and BOOM, now he can keep it in, I should have known!....Other babies seem to do better on the Dr. Browns.

Anyway, I wanted to mention the gas part since Brayden is still so young in case that is one mroe issue you are having to deal with.

I have Brooke on Neocate...and because it is soo think she vomits a lot more, but she is not in pain...tried thickening her bottles, and she went back to her panfu; ways, so I figured I would rather be covered in sick all day, than have her in pain.

Also from what I have read rice cereal is one of the worst cereals for reflux babies :(

OOps.....I so hope you get some decent answers in regards to Braydon.........Hang in there.

Also as I said in my e-mail, neocate could be good for him, and we saw a change in 24 hours, it can take 2 weeks though.

Okay I don't know all the details of your grandson's issues but I do know this. When we thickened our boys' bottles per recommendations from our GI they starting spitting up ALOT and they are silent refluxers. I read that it is more difficult for babies to tell when they are full when there is a lot of cereal in their bottles and they tend to overeat and this will naturally cause them to spitup. It seems like a simple answer, but sometimes the answers are simple. As soon as we cut back the rice the spitup drastically decreased. We don't use it at all anymore, but again my boys' have silent reflux so they never spitup that much to begin with.

I hope you are able to find something to help Brandon feel better soon. It is so hard to see these little babies in pain.

I just wanted to add that my son also had a hard time with rice. I used it to thicken his night time bottles (per peds instructions) when he was three months old. He was all ways very gassy and fussy and it was worse at night. When I took him off the rice he was much less gassy. It is hard to say if he out grew it or if it was the rice. I suspect it was the rice though because he also had small patches of exema that went away a few days after stopping rice and he has never had it since

Katey - By any chance was the exema on his little face? Braydon's face has had bumps on it since he was aount 2 weeks old and the ped just keeps saying that "all babies get it and that it will go away". GodI hate hearing those words "all babies" - as if all babies are the same. We all know that is not true.:stirthepot:

Hi - Emma has had eczema since 3 weeks old..since the agency brought her to our home. It turns out that she has MSPI ( milk/soy protein intolerance).

If your daughter was thickening with Gerber cereal, it could have helped cause some of the spitting up because Gerber has milk/soy in it. We have been using Earth's Best rice cereal with Emma since we were told to thicken her cereal at 2 months old.

Now that she is on Neocate for about 2 weeks and the Earth's Best rice cereal, we have noticed a huge improvement in her eczema....The Neocate seemed to have helped her pain within 24 hours.

If your grandbaby does have MSPI, you will need to read all labels before putting any food in the baby's mouth. We have to watch until Emma's 1 yr birthday at least...

Keeping your grandbaby in my prayers.

I don't have much to offer here, but I did want you to know that I had a sigmiodoscopy a few years ago and it didn't hurt a bit. A little uncomfortable, but not bad. The stress before was way worse.

It sounds like you have some great leads, advice and info. I'm sure this will all get straightened around soon.

I only feed maiya earth's best or healthy times- all others made her intestines go crazy. I agree that not all cereal is created equal

Katey - By any chance was the exema on his little face? Braydon's face has had bumps on it since he was aount 2 weeks old and the ped just keeps saying that "all babies get it and that it will go away". GodI hate hearing those words "all babies" - as if all babies are the same. We all know that is not true.:stirthepot:

Sebastian's exema was on his inner thighs. He had little patches of it. My ped said it was probably the soap or laundry detergent. But two days after I took him of rice it was gone and he never had it again. I also only use Earth's Best.

I have a couple of more things to ask and tell you, Sandy. First, why are they scoping his colon if he is vomiting? Does he have mucus or blood in his stools? A sigmoidoscopy will not diagnose EGID. Eosinophils in the colon are not consistent with allergy. Those are actually more consistent with infection. For it to be allergy related, they are either in the esophogus, stomach, or small intestine. I also can't imagine them not putting him to sleep. I would absolutely question that. Thickeners are not reccomended for kids with EGID. They are not digested well by anyone and couple that with an impaired gi tract, it's not a good combo. I would ask why he is not being scoped with an upper endoscopy.

I wanted to mention that the bumps are probably baby acne at his age. Most babies do get that, and it does go away on its own by about 3 or 4 months. Lotion makes it worse, by the way. True eczema is not bumpy...it is patchy and crusty.

I'll second the bumpy part Melissa just said. No clue on the rest though. :D

Melissa, I wish I had more answers to your questions for you. I called my daughter tonight and told her to make certain that Braydon does in fact need the sig test and that it is safe and "painless" for him to have it without going under. I do know that when Braydon was two weeks old he was rushed to the ER with diarrhea and they diagnosed it as "rotavirus". Maybe this has something to do with the test. I do think that Braydon has had blood in his stool once or twice. My daughter said the reason they are doing this test is to see if he is having an allergic reaction to his "nutramigen". Does any of this make sense to you? It is very confusing to me. I'm still not sure if they suspect EE or EGID as well. Guess I'll know something soon. Thanks for caring so much.:angel5:

Sandy,
Did you come up with EGID or EE, or did the doctor mention it to your daughter as a possibility? If they think that is possible, an upper endoscopy with biopsies is the only way to determine if this is an issue for him or not. It is called allergic but many times the reaction (a type of white cell called an eosinophil infiltrates the esophagus, stomach or small bowel producing inflammation) can be triggered by intolerances to proteins, rather than true IgE mediated allergies to those proteins. If he had a skin allergy test and a RAST blood allergy test, they could come back negative and he could still have an eosinophilic disease. Neocate only (NO RICE OR OTHER THICKENERS) would be the first line treatment for this disease. If it doesnt work, swallowed steroids and/or other meds can be considered to heal the inflammation.

You are right with eosinophilic esophagitis mimicing reflux but does not respond to reflux meds. What is important to know is that both can exist at the same time. The only thing that can clear up what it is and what it isnt is the upper endoscopy with biopsies and a 24 hour ph study.

If they are planning on the sig being done in the office under no sedation, it would be to check for evidence of allergic colitis-blood in the stool due to MSPI (milk soy protein intolerance) and this would warrant Neocate...although you could put him on Neocate without checking for this. Many babies are put on Neocate based on symptoms, and if it works they stick with it.

My son is almost 16 months and still on Neocate, he does not tolerate any food. He has been on it since he was 9 months old and it was an amazing improvement for him, although he still has severe GERD. He is having an endoscopy next week to biopsy his stomach, esophagus and small bowel to see why.

Melissa, I wish I had more answers to your questions for you. I called my daughter tonight and told her to make certain that Braydon does in fact need the sig test and that it is safe and "painless" for him to have it without going under. I do know that when Braydon was two weeks old he was rushed to the ER with diarrhea and they diagnosed it as "rotavirus". Maybe this has something to do with the test. I do think that Braydon has had blood in his stool once or twice. My daughter said the reason they are doing this test is to see if he is having an allergic reaction to his "nutramigen". Does any of this make sense to you? It is very confusing to me. I'm still not sure if they suspect EE or EGID as well. Guess I'll know something soon. Thanks for caring so much.:angel5:Carla is right, the sigmoid in the office, without sedation can check for allergic collitis. But, if it were me, I would refuse the test. Here is why. If he has had blood or mucus in is stool on occasions, and given the the dr. already suspects it, I don't see any reason to put him through it for a formula change. I would ask for the change anyway, and see if there is a difference after a full month. Then if there is no difference in him, do the tests. There are also blood tests that would be less invavsive that can give indication of allergic colitis/reactions as well as stool smears for specific cells in the stool that go along with allergy. I know that you said you like this dr. and I am not questioning him. He is more than likely just wanting to be thorough, and honestly, if it were me then (when Em was 7 weeks) I probably would have done the test. But knowing what I know now, I don't wouldn't. I just don't see any reason to do it when you can do the formula change first. Plus, his reflux won't have anything to do with what his colon looks like. If it is normal, do they not plan to change his formula? I feel like anything easier to digest is going to be better for his reflux, regardless of signs of allergy or not. Like I said, this are all my opinions. Something you can give your daughter to think about or ask the dr. I will leave at that. If you have anymore questions, hon, feel free to email me or pm me! Good luck!

The sig also doesn't go all the way into the colon like a colonoscopy does so it wouldn't check for EOS in that area anyways, you'd still need a scope and full colonoscopy which DOES require him to be put under. Evan was checked for EE after he was put on Neocate (well, duh, it would probably be healed by then). For a few mos (from about 11-14 or 15) he was on Neocate and plain rice only (NOT cereal). Then we slowly added things back in. Basically how you would treat EE anyways. He's doing well now and seems to be outgrowing a lot of his intolerances, but it was a LONG road to get where we are now. Good luck and don't hesitate to get a 2nd opinion. We got one and while he was great and started us in the right direction, we did end up going back to our first GI. Here's a pic of Evan's eczema from soy. It took us a while to figure it out as we kept getting told infant acne too.

http://img.photobucket.com/albums/v216/thepeach80/Stuff002.jpg

This is becoming a totally confusing and worrying thread for you isn't it. Please don't be overwhelmed with all this, it just is a bit strange for all that I have been here and seen I have never had a Dr do this to get a diagnosis to help reflux.

I think that this test is probably quiite uneccessary and if a test was to be had there are plently more that will give a better diagnosis.

We have actually been tested for Chrons and Collitis, and the only way to determine this fully is a full anesthetic colonoscopy, we actually didn't have to have that as he had an ultrasound and a follow up proved that it wasn't. An ultrasound can check for the the thickness of the illium wall which would indicate inflammatory bowel diseaase.

Collitis is very rare in children under 2 and is amost impossible for a child younger.

Good luck with this test, let us know how it goes if you go through with it.