Posted By Posting
Apr 06, 2009
b-girl
Mom to Jasmine aka: Jazz 01/24/2007
Dx with silent reflux at 8 months
FPIES, DGE, MSPI. Recently diagnosed with EC (Eosin. colitis and now Primary immune deficiency disease.
Also mom to Nathan. born Jan.20th, 2009, MPI . so far dx with reflux and has an extremely sensitibe GI system. Also dx with primary immune deficiency disease.
Not what I wanted to hear..
So Jazzy had her appoint. with the metabolic specialist today. Although he cannot explain her hyperpigmentation in her folds/creases, he thinks she may have a severe allergy to ALL PROTEIN, and she probably won't outgrow it??? WTH? How does he know????

We are doing blood work for some metabolic dis., so we'll see. I have to take her back for more allergy tests, but I am beside myself right now......Imagine a life with NO protein??? I don't buy that explaination yet. Nate's screaming ( he has colic!) so I'll check in in a bit.

Apr 06, 2009
isobel'smamma
Sara, Mom to Isobel 10/01/08 Dx Silent reflux @ 6 wks. Prevacid 22.5mg split in 2 doses. Pepcid .5ml twice a day. Diagnostically confirmed milk protein, egg and cat allergy. Suspected corn, pea and squash allergy. Trialed Alimentum and Elecare without success, currently on Isomil Advance RTF with moderate success. Barium Swallow and UGI 3/08 Pondering a ph probe and endoscopy.
Hyperpigmentation in the folds and creases of the body can be caused by hyperinsulinemia AKA insulin resistance. It's usually a precursor to diabetes but can also be caused by other pancreatic and adrenal issues. Just a thought.
Apr 06, 2009
b-girl
Mom to Jasmine aka: Jazz 01/24/2007
Dx with silent reflux at 8 months
FPIES, DGE, MSPI. Recently diagnosed with EC (Eosin. colitis and now Primary immune deficiency disease.
Also mom to Nathan. born Jan.20th, 2009, MPI . so far dx with reflux and has an extremely sensitibe GI system. Also dx with primary immune deficiency disease.
Funny because I have hyperinsulemia and the Dr said probably not in her case...weird???
Apr 06, 2009
isobel'smamma
Sara, Mom to Isobel 10/01/08 Dx Silent reflux @ 6 wks. Prevacid 22.5mg split in 2 doses. Pepcid .5ml twice a day. Diagnostically confirmed milk protein, egg and cat allergy. Suspected corn, pea and squash allergy. Trialed Alimentum and Elecare without success, currently on Isomil Advance RTF with moderate success. Barium Swallow and UGI 3/08 Pondering a ph probe and endoscopy.
why would he say probably not? It's not the kind of thing you can look at someone and know - it really requires simple blood testing to figure out. If your hyperinsulinemia is caused by a hereditary issue rather than a dietary issue I'd maybe push for testing. That is weird.

It's hard to imagine being allergic to all proteins. What makes him think that? What a challenge - I hope he's not right and there's a solution for her.

Apr 07, 2009
slimfast13
This is our dd, Alessandra. Dx with GER 10/07. Ran the gamut with meds and now done with them (crossed fingers). Using magnesium, probiotics and prebiotic supplements. With the exception of teething and general sassy attitude, all is well now. They really CAN grow out of it!
I guess the next step is to figure out if she can tolerate amino acids. If she can, there are supplements that supply them - here's one link

http://www.protherainc.com/prod/proddetail.asp?id=JST

Apr 07, 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.
If you are not satisfied with the results of the diagnosis after the blood work - maybe a second opinion?
Apr 07, 2009
b-girl
Mom to Jasmine aka: Jazz 01/24/2007
Dx with silent reflux at 8 months
FPIES, DGE, MSPI. Recently diagnosed with EC (Eosin. colitis and now Primary immune deficiency disease.
Also mom to Nathan. born Jan.20th, 2009, MPI . so far dx with reflux and has an extremely sensitibe GI system. Also dx with primary immune deficiency disease.
Slimfast, she can not tolerate any amino acids.... Too bad. I think I'll be going for a 3rd opinion.
Apr 07, 2009
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
I would definitely get a 2nd, 3rd or 4th opinion if you aren't satisfied with the explaination. I'm not sure why any doc would say that she probably has something when they haven't done any blood work or anything. I know that my docs tell me what they are testing for or looking for by doing certain test but not a diagnosis like that without any hard proof. I'm sorry you are going through yet another trial.
Apr 07, 2009
slimfast13
This is our dd, Alessandra. Dx with GER 10/07. Ran the gamut with meds and now done with them (crossed fingers). Using magnesium, probiotics and prebiotic supplements. With the exception of teething and general sassy attitude, all is well now. They really CAN grow out of it!
Poor Jazzy - she's gone through way too much. I'll keep on the lookout for info, but I can't find anything on total protein allergy as of yet
Check with your
doctor first!