Posted By Posting
Feb 21, 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.
Jazzy stuff
Hi ladies

Things have been crazy here with all of us getting sick..including 4 week old Nathan, so I've been MIA a bit, but still reading posts.

Just wanted to update you re: Jazzy. We are to see a Neuro soon (waiting for an appoint.) to discuss migraine issues and genectic protein deficiency? Not sure how that will play out.

it seems that Jazzy CANNOT tolerate any type of protein, and possibly amino acids too. We are down to our last resource, a trial of pure amino acid combo order from our dietician from the UK ( at 100$ a bottle per week!!!! yikes!) If she can't tolerate this then it will confirm that she cannot tolerate any type of protein/amino acid.

I am petrified of what that could mean or do to her. It seems that almost all of her behaviour can be linked to eating some form of protein.

What I do not know is if she actually is getting migraines, and if so, are they caused by the offending foods? If not, are proteins causing her that much pain that she reacts with violent outbursts?

Hopefully I'll know soon, but I feel like I am venturing into unknown and scary stuff here......

Feb 21, 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
Have they tried any type of blood panel on her to test for genetic issues. I only ask because DH has PKU and it is a genetic issue where his blood can't break down the protien phenanalatine (SP) ALL babies are tested for PKU at birth BTW.

Thank heavens DS Jedd can't have it as we now I am NOT a carrier, I was tested prior to getting married. That means that NON of our kids will HAVE it but ALL of our kids will carry the recessive gene. So when Jedd gets married when he is old enough, his future wife will need to have her blood tested.

Praying that the appt goes well. (((HUGS)))

Feb 21, 2009
noor117
Strong, Beautiful, daughter who is thriving beyond imagination and a healthy, happy 3 year old.
How did they confirm the protein intolerance, or is it a symptom based thing. I am sorry you are dealing with so much. I hope Nathan will be a very healthy little one.

I don't know enough about the protein intolerance or anything to help. I wish I did. I can tell you that Ultracare for kids has been a tremendous blessing for us. Meggy consumes a quart or more a day now. She still cries out in pain often, but she is growing and holding down her food.

Will keep all of you in my thoughts and prayers. Wishing u the best.

Feb 22, 2009
jessicalynn
mom to 4 kids with probable
Mitochondrial Disease
http://ourbeautifulchaoticlife
.blogspot.com/
Dealing with Fundo, J tube feedings,Severe Dysmotility,Aspiration,Asthma,
FTT,CVS,Dysautonomia,Resp.Distress
Connective Tissue Disorder,
GERD,EGID,
Visceral Hyperalgesia, and more
Many meds

I am sorry she is still having such a rough time. Brent can't tolerate any food, and and was dx with "protein intolerance" long ago, cannot digest intact protein, I dont know if this is what you are speaking of. He also has trouble with elemental formula but he doesnt have much of a choice right now.Before he started Neurontin for his neuropathic pain, his behavior was awful, and he just felt even more awful. He still has a lot of pain, but is able to play some now

I hope they are able to help her, maybe you should look into having a genetics and metabolics workup in addition to neuro

Just last week my 6 year old daughter was dx with CVS cyclic vomiting syndrome/abdominal migraines.One good thing is that she is old enough to tell us what is going on in her body.This is what she experiences: She has recurrent episodes of paleness,extreme fatigue,stops eating/drinking,dramatic weight loss,severe nausea,severe vomiting, that seems to cycle.She gets irritable and sometimes does have a headache, and wants to sleep. She was already on Nexium,Zantac,Reglan,Bentyl,Flagyl,Miralax, and cyproheptadine was added to start with as a migraine prophylactic med with odansetron(zofran) and phenergan for the attacks. I do know that certain foods can set off the migraines.

I hope you guys are feeling better soon, and I will be praying for Jazzy

Feb 23, 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.
Hi all,

Jazz was Neg for PKU at birth.

Engi, the protein intolerance is purely symptomatic, as I have tried over 15 protein without success. I have also tried neocate and hemp protein powder without luck. I am wondering if she can even tolerate amino acids Jessiaclynn, as it seems so far no luck. I am sorry to hear about your daughter's DX, but I hope at least she can get some relief now. I will definately be looking into metabolic workup for Jazz...Thanks all

Check with your
doctor first!