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Aug 29, 2008
mom2adriane&morgan
Adriane Reese 05/16/07; seemingly healthy when born; diagnosed with MSPI, severe Reflux, Apnea, Ashtma, Epilepsy, and severe food allergies(rice, corn, milk, soy, eggs, oats, wheat, beef, chicken, squash, pumpkin, avocado, etc.);On apnea monitor, seems to be tolerating RCF w/carbohydrate mixed in; on Zyrtec, Xopenex, Prevacid
New plan of attack...Melissa & all others who have weighed in
So, the allergist called and they have all consulted throughout the office and her GI weighed in again. They have decided to completely eliminate food. So, she is back to formula only and has been handling it fairly well. I think because she has had diarrhea she is okay with not eating. Which is scary considering where we have been in the past.

I am looking for another place to take her. We are in Oklahoma and no matter where we go it is going to be tough. She has had so many diagnosis that I want things figured out. Apnea, MSPI, AR, Asthma, Epilepsy, and now food allergy, it seems like I am leaving something out. We have been to a geneticist who basically blew us off and made us feel like there was no reason for us to be there. He just said that she was very sensitive and her immune system is hypersensitive. I guess that explains two different strains of RSV as well as pneunomia.

Any suggestions? I am kind of at my end of the rope. My husband has family in Colorado and my mother-in-law mentioned some children's hospital there. Anyone familiar with this?

Aug 29, 2008
mdbarbagallo
Melissa - Mommy to Sebastian, born 9/28/07 @ 7 lbs 7 oz and 20.75 in. At docs at 12 months: 27 pounds and 32 in! Good grief! GERD - currently on Prevacid suspension (liquid equivalent of 45 mg a day). Allergic to dairy, soy, eggs, wheat, all treenuts, peanuts, fish, shellfish, peas, sesame, bananas, barley, coconut, dust, dust mite, dog, cat, latex. Seasonal allergies. Oral Allergy Syndrome (OAS). Neocate only - no solids - until further notice (drinks and loves water, too). Loves his doggie, our rescued Treeing Walker Coonhound, Louise, even though he is allergic to her. Louise will make your doctor a homemade pie if you would like her to. PHOTO: We couldn't do a cake on Sebastian's birthday, but that didn't stop him from tossing around the contents of a big bowl of popcorn! He now tries to eat it when we play with popcorn, so no more of that game.... :(
Hi there. I actually just logged in to write to you...and then I saw your post! I’ve been thinking about you a lot.

I honestly am glad to hear Adriane is off food for now. If she has been having reactions like that for so long, she is probably a mess inside…and elemental formula will heal the damage so you can eventually start with a clean slate. I know Jedd on here had a lot of serious feeding issues, and now his mommy Jessica is quite successful in getting him to eat. You will get there, too, when Adriane is in good shape again. If she has inflammation and keeps eating foods, she’ll eventually be able to keep nothing down. Are you planning on having a scope and/or flex sigmoidoscopy (rear end scope)? That would be one way to tell if she’s inflamed and if she needs to be off food.

Sebastian was taken off food at 9.5 months. I honestly think he has forgotten he ever ate solid food. He was refusing everything anyway, and now I really believe he was refusing it because he’s no dummy – he knew it was hurting his belly. I am just going to cross that bridge when we come to it.

My own son was misdiagnosed before – we were told by his Hopkins GI that he had Celiacs even though his tests were negative and we have absolutely no family history of it. She actually told me to cancel his appointment with Dr. Wood because she had found the “answer.” I obviously kept our appointment and Dr. Wood was totally professional but basically told us in no uncertain terms that the doc was a crackpot. I know how hard it is to find a doctor you can trust.

Our second allergist, Dr. Bacon, is in Baltimore, too, and he is great. He actually referred us to Dr. Wood. Now how many doctors we have all met have egos small enough to admit someone else can help your child more than they can??? If you’d like, I can ask Dr. Bacon for allergist (if you need one) recommendations for you. He gave some to mom2coy and risaroo.

Oh – to keep Sebastian on a feeding “schedule,” I have added two or three “mini bottles” (2-3 oz) at times where he used to have a solid meal. This way, I’m keeping a placeholder for him and can eventually sub in whatever he is learning to eat. So far, it’s working great, and he expects it. Worth a try, you know?

I know there is a very reputable children’s hospital in Colorado – I think it is just called The Children’s Hospital. -----http://www.thechildrenshospital.org

Please keep us all posted.

Aug 29, 2008
mom2adriane&morgan
Adriane Reese 05/16/07; seemingly healthy when born; diagnosed with MSPI, severe Reflux, Apnea, Ashtma, Epilepsy, and severe food allergies(rice, corn, milk, soy, eggs, oats, wheat, beef, chicken, squash, pumpkin, avocado, etc.);On apnea monitor, seems to be tolerating RCF w/carbohydrate mixed in; on Zyrtec, Xopenex, Prevacid
It has only been 24 hours without food. She is still having diarrhea but until this morning had not asked for food and I think the only reason that she wanted it then was because Morgan was eating breakfast. She didn't fight too hard though.

We had a scope done in June and the upper part looked good but when they got to her lower stomach and intestines she had a lot of adema. He acted like that would go away or something. Which makes me wonder if that is part of the issue. Our GI has been great but I'm thinking that we might have to do a lower scope also. I would love to hear Dr. Woods opinion on allergists here in OK or about the people in CO. She is on RCF and we add the carbohydrate but I still wonder if that is part of the issue also. Even though we went to it because the Neocate and all previous formulas were causing vomitting and diarrhea. Of course, our GI is on vaca until the 15th! UGGH!

Thanks for all the support and info. - Amanda

Aug 29, 2008
mdbarbagallo
Melissa - Mommy to Sebastian, born 9/28/07 @ 7 lbs 7 oz and 20.75 in. At docs at 12 months: 27 pounds and 32 in! Good grief! GERD - currently on Prevacid suspension (liquid equivalent of 45 mg a day). Allergic to dairy, soy, eggs, wheat, all treenuts, peanuts, fish, shellfish, peas, sesame, bananas, barley, coconut, dust, dust mite, dog, cat, latex. Seasonal allergies. Oral Allergy Syndrome (OAS). Neocate only - no solids - until further notice (drinks and loves water, too). Loves his doggie, our rescued Treeing Walker Coonhound, Louise, even though he is allergic to her. Louise will make your doctor a homemade pie if you would like her to. PHOTO: We couldn't do a cake on Sebastian's birthday, but that didn't stop him from tossing around the contents of a big bowl of popcorn! He now tries to eat it when we play with popcorn, so no more of that game.... :(
It took us a good week of no food to see the end of the diarrhea...everything lurked in Bassy's system for a while. Maybe this is what is going on with Adriane?
Check with your
doctor first!