Posted By Posting
Oct 22, 2008
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.
Back from the G.I maybe CSIDS..thought of Rory too
And now she thinks that on top of everything else, she may have CSIDS because of Jazzy's belly getting so swollen/distended, and the gas etc... I thought of you Michelle and Rory. I have to put munchkin to bed but I'll post more in a bit....
Oct 22, 2008
michelle&aurora
Aurora born March 17, 2007
3 years, 8 months old
Weighs 25.8 lbs
8 lbs 11 oz at birth.
Recovered Chronic Projectile Vomiter
Prevacid Free since September 08
Egg allergy diagnosed Jan 26/09
Has a Pectus Excavatum
Has an Epipen
CSID, that is what Emily and Quinn have. I don't think Rory has this, as diahrrea has never really been a problem for us. She always had loose stool on formula, but now that she is eating, her stool is firm. When it was loose, it was only a once a day occurrence. But it makes sense for Jazzy, because of her history of pain and diahrrea. It would be good to know if that is what Jazzy has, because I think it is treatable with Sucraid. You should contact Kat or Sarah for more info. I don't know why Rory bloats actually. It doesn't make sense, in the absence of constipation and gas.....no real issues other than the size. I'll be discussing possibilities with her family doctor next month. I'll be looking for an update on what you find out. I pray you get all the answers you need to get Jazzy feeling better. HUGS.
Oct 22, 2008
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.
Thanks Michelle. It is a bit strnge her bloating and all. We still have to see an immunologist next week re: immunoglobulins and allergies etc... so I'll post then and hopefully some of what I learn I will be able to pass along. I'll be doing the CSIDS test Friday, so hopefully those results will be in soon!!
Oct 22, 2008
emibug
Kathryn, Pager Volunteer and mommy to Emily Mia 02/04/07. 3 years old with GERD. 30mg Prevacid and Pepcid AC. Mylanta needed for flares. Failed prilosec med switch. Tried and failed many med weans but GERD and pain are well controlled. Functional constipation. Reoccurring SBBO. Suspected IBD or autoimmune disease. Resolved issues: MSPI, CSID (acquired), Stage 2 kidney reflux, Chronic diarrhea.
Audrey Meadow 06/20/08. born 34/35 weeks. Still b/f and eats everything! ftt and chronic constipation.
don't know how long i can type for but i will try to get as much in
2 types of Sucrase Deficiency: 1) Acquired and 2)Genetic. Genetic CSID is very rare. Acquired is much more common. Acquired Sucrase enzyme deficiency comes from a virus, trauma, or illness of the bowel. This is a temporary condition that lasts 6 months to a year after damage has been healed (duration depends on the damage.) It will only return if the damage returns.

The only way to test for true CSID is through genetic testing. an Enzyme biopsy will tell you that the enzyme is lacking but it will not confirm CSID. The breath test will also tell you if sucrase enzyme is lacking but it will not tell you what CSID category you fit in.

Neither Emily nor Quinn (I am pretty positive) have not had a genetic conformation of CSID. This Dx is given by the GI for treatment and medication purpose only. The true diagnosis name is Sucrase Enzyme Deficiency.

the treatment for both acquired and genetic is the same; Sugar free and starch limited diet and/or Sucraid Enzyme replacement medication. Quinn takes Sucraid well and it helps her a lot. Emily will not take it. So we do as much of a Sugar free diet as possible. Sucraid will not help starches.

sugar does not always have to cause diarehea, though that is the main symptom extreme gas bloating and cramping are unpleasent side effects as well.

email is wicked_lg@yahoo.com sorry for being so short i gotta go *hugs* to jazzy and you!
Oct 23, 2008
engin117
My name is being used fraudently to ill represent me. Please be cautious of any information you receive with my name. including engi.nowaira.net, engi@nowaira.net, Engi@nowaira.us, anything from anyone claiming to be Engi Nowaira online. Otherwise, I will be representing myself in person so that everyone will have opportunity to identify me in person.
My previous drivers license was also stolen. The new one has extra security features on it.
Thank you for sharing. I didn't know about the acquired type or that the child may not constantly have diarrhea depending on the foods consumed.

I have been looking more info and left a message for Meggy's GI to ask for a Sucraid trial.

http://www.sucraid.net/diagnose_csid.html

It would be wonderful if a med could provide some relief.

Check with your
doctor first!