Posted By Posting
Oct 10, 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.
Jazzy's on a new med and more info about EGID
So yesterday Jazz started a new med for her EC, also a Mast cell stabilizer. It's called Zaditen. The thing that bothers me is that one of the side effects is sedation......I don't want her to be feeling like this all the time....anyone have any experience with this med? It's usually used for athsma.

Also, I found out today that with EGID's, it's either caused by allergies or an autoimmune reaction. If it's an autoimmune response in Jazzy's case, then this medication will not work for her and then we'll be on to steriods :-( Anyways, she's been feeling pretty crappy lately so hopefully this won't take too long to start working........

I've been trying to keep up with posts but am soo exhausted right now with us not sleeping and constantly chasing down Dr for treatments. Hopefully I'll be back online by the weekend.

Oct 11, 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.
May I use Jazz story and picture on my website?

I hope that she feels better very soon. I hope that the sedation affect is only temporary. Did anyone mention if it is, or if the dosage could be cut down to help with it in time?

She is beautiful and I hope that something is found very soon to help. It is tough when there are more bad days than good.

The medical problems can be very exhausting and all we want is for our little one's to be well.

Oct 11, 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.
Thank you for your support...by all means you may use Jazz's pics/info on your website...Anything to help with awareness :-)

I'm going to call the manufacture of the meds on Monday and get as much info as possible!

Oct 11, 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.... :(
I can't believe I am saying this, but I sort of hope it is allergies because then you can get it under control. Does she seem pretty zoned out? Does that side effect happen to all kids on it? How is she feeling?
Oct 11, 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.
It totally spaces her out...actually I was thinking of you guys and how Seb could use a couple of doses now and again so that you guys can get some sleep!!!!! I hope it's allergy related too, then she at least has a chance of outgrowing it.. She seems kinda of the same lately, just subdued and sleeping more which is soooooooo rare for her. I'll update more in a bit, for now I am hating the subdued part but kinda liking the more sleeping part :-(
Check with your
doctor first!