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Old 02-06-2008, 07:40 AM   #21
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Re: Intoducing my sn baby...and yours!

Mitchell was born 3 weeks early, but was completely healthy. He has had issues since a few weeks old and was breast fed for the 1st year of life, without formula supplementation.

At 1 month, he had severe head-to-toe eczema. At 3 months, he was diagnosed with reflux based on symptoms (screaming 24/7), but the reflux didn't not respond to medicine (Zantac). He continued to get worse with age.

At 6 months when we tried to introduce new foods we had failure after failure. He vomited some of the food right away, would wake up every 15-30 minutes screaming and thrashing around in bed uncontrollably, and he would have mucosy diarrhea. When he didn’t have diarrhea he was horribly constipated and we would have to give him suppositories to make him have a bowel movement. He was also switched to Prevacid at this time, but he still continued to get worse.

At 8 months, I requested allergy testing and it was positive for milk, eggs, nuts and wheat, but negative for soy and peas. His iron was also tested at this time and it was very low. I immediately eliminated the allergens from my diet and we saw little improvement. We continued feeding foods we thought were safe (rice, pear, and banana).

At 10.5 months, we decided to cut all foods out of Mitchell's diet and I went on a severe elimination diet. We saw more improved results, but he was still waking up at least every 2-3 hours screaming in pain. We would try Tylenol, which wouldn’t help much.

At 11 months we met with a GI doctor and she scheduled an endoscopy. He was officially diagnosed with Eosinophilic Gastroenteritis (EGE). EGE is a rare white blood cell disorder, which causes his body to incorrectly think food is a parasite so it goes into attack mode when he eats.

He did not gain any weight from 7 to 12 months of age and began losing weight at 11.5 months. He was hospitalized for dehydration, malnourishment and FTT at 12 months old for 1 week. He received an NG tube in the hospital and was put on Neocate Junior. We saw results right away, but he was still in quite a bit of pain. We decided to eliminate the foods we thought were safe (rice, pears and banana) and he became a new baby. He doesn’t fight to go to sleep, he sleeps for 12 hours a night with few wakings and he naps regularly.

At the present time, he receives his 90% of his Neocate via a g-tube he received on 1/8/08. He has gained 3 pounds in the past 6 weeks and is back on the growth charts. He is only waking up 1-2 times a night now and he just wants his pacifier or a sip of Neocate and then he goes right back to sleep without any screaming or crying.


It's funny though...after reading through everyone else's introductions, I see that even in this limited group there is 1 other confirmed case of EGE and 1 that looks suspected. It's crazy considering this disorder is supposed to be pretty rare!

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Old 02-06-2008, 08:59 AM   #22
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Re: Intoducing my sn baby...and yours!

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Originally Posted by Katicabogar View Post
Okay, refresh my memory...does Daniel have GERD or just tummy problems? Syd (GERD) could NOT tolerate green beans, but she likes peaches occasionally, and she usually never gets sick from them.
Good luck..let us know how it goes.
Not with GERD, but just reflux; we still have his matress at an incline. he has tolerated the green beans so far; but with Daniel his body doesn't react until the "honeymoon period"; three months after introduction. So we will see. He is LOVEING the peaches though.

Here is what he is having done on March 11:
EIG (esophagogastroduodenoscopy)
SIG (Sigmoidoscopy)
and i think a ACSorASC; but that doesn't seem right because when i went on the internet it said something about women's health
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Old 02-06-2008, 10:48 AM   #23
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Re: Intoducing my sn baby...and yours!

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Originally Posted by Delaney21 View Post
He was officially diagnosed with Eosinophilic Gastroenteritis (EGE). EGE is a rare white blood cell disorder, which causes his body to incorrectly think food is a parasite so it goes into attack mode when he eats.

It's funny though...after reading through everyone else's introductions, I see that even in this limited group there is 1 other confirmed case of EGE and 1 that looks suspected. It's crazy considering this disorder is supposed to be pretty rare!
Do you have or know where I can find a list of symptoms for EGE??? Your little guy sounds a lot like my Syd.
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Old 02-06-2008, 11:14 AM   #24
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Re: Intoducing my sn baby...and yours!

here is a web-site that i found:
http://www.wrongdiagnosis.com/e/ege/intro.htm

also i don't how many of you mama's know about this one, but www.mspiguide.com it helps mama's that have babies/children with GERD,FPIES,MSPI,... Gastric issues
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Old 02-06-2008, 11:16 AM   #25
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Re: Intoducing my sn baby...and yours!

I'll join the ranks. Emily is 2, and also dx'd with Eosinophilic Gastroenteritis. Her story is pretty much identical to the others. Didn't tolerate starting solids. She was already on Neocate by 2 months, because her symptoms on other formulas were so severe. She was scoped after starting solids and reverting back to bloody stools, screaming, vomiting, ect, and we got our official diagnosis then. She was on nothing but Neocate until 1 year old. She was scoped to be sure she was clear of Eos and we started solids. That's when the aversions kicked in. Each time she failed a food, she had less and less interest in trying another. She lost 2 lbs, when she was barely clinging to the charts already, so in March of last year, we got the gtube. Let her grow, and start feeling better, then went back into food trials. She actually has quite a list of safe foods, and for that we feel very lucky. She still requires supplemental feeds, and is still a little peanut, but she's much healthier over all. It also turns out that her reflux is a separate issue all together. She has it regardless of the EGE. So, she's on an adult dose of Prevacid as well as Pepcid at night. She takes Erthromycin for gut dysmotility, and has asthma/allergy meds to top it off. She is also immunodefficient, so even though we vax'd, she didn't make the antibodies as she should, or she lost them entirely when she did make them. So, we wasted all that stress and effort in getting her vax'd. She's sick often, still complains of belly pain regularly, gets so distented, she looks like one of those kids straight out of a "Feed Africa" campaign commercial. Her last scope was clear however, so we are now just chucking it all up to gut dysmotility.

Lots of doctors, lots of meds, and lots of hospital stays, but she's an absolute joy despite it all. The funniest little thing you could ever meet. Her developement has always been way ahead of the average, and for that we are thankful.

Nice to meet some other Eos. families here.
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Old 02-06-2008, 04:04 PM   #26
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Re: Intoducing my sn baby...and yours!

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Originally Posted by Katicabogar View Post
Do you have or know where I can find a list of symptoms for EGE??? Your little guy sounds a lot like my Syd.
The best sources of information I have found are:

www.apfed.org
http://www.cincinnatichildrens.org/s.../eosinophilic/

If you have any questions, feel free to ask!


Menfusse: It's good to hear your daughter has quite a few foods! We have yet to find anything safe for Mitchell, but we are going to be going out to Denver's Eosinophilic clinic soon, hopefully!

I am truly amazed at the number of Eos kids we have in here!
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Old 02-07-2008, 10:27 PM   #27
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Re: Intoducing my sn baby...and yours!

My DS is 3 yrs and sees an OT for SID. Mostly his is learning to slow down and recognize when he is sensory seeking. He has a lot of difficulty in large groups often times getting overly active. He severly bites his nails when not in constant motion. Still working on finding something to help him stop this. I haven't had to clip a nail in over 7 months and now he is working to his toe nails (Gross). May look at ADHD in the future.
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Old 02-08-2008, 07:56 AM   #28
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Re: Intoducing my sn baby...and yours!

I have a neice whose son has not been "clinicly" diagnosed with altisum. (SP?)
He could not handle being in large groups, kinda in his own world, never played with other kids.....ect........but was really smart, could not follow simple directions tho.
They changed his diet to a glutten free and WOW what a change, he is in my Sunday school class, and he now sits and perticapates in the activites, cummunacates with others, and plays, does good in large groups ect.......its amazing.
He is 5 now and for the first time last sunday my neice was able to come to church and relax, he even sat through a 40 min sermon.
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Old 02-08-2008, 12:17 PM   #29
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Re: Intoducing my sn baby...and yours!

Me too:

Both my DS' are Sn. It is in my siggy as well.

DS# 1 was born with a congenital cateract and after a ton of surgerys is legally blind in his right eye. He was more SN in his first 2 years than he is now. He functions mormally but will be challenged with many more issues as he grows.


DS #2 has congential heart defects X4. Also known as shones complex. HE was born with this but the Doctors missed it until he was 14 months old. We are very lucky that he is still alive! Ds has aortic coarctation, bicuspid aortic valve, mitral stenosis and bilateral superior vena cava. We are waiting as long as possible to do open heart surgery so that he can grow as much as possible.

to all of your lo's mama's!
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Old 02-08-2008, 02:36 PM   #30
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Re: Intoducing my sn baby...and yours!

Hi everyone! Here is our story...
I have one daughter, Nora, born 6-7-05, and our second daughter is expected in March. Nora has seizures daily and is globally developmentally delayed. She does not have an official diagnosis and we don't know what is causing her issues. Her seizures occur multiple times every day. She is one of the (un)lucky people who does not respond to meds. She first crawled at 18 months, took her first steps at 2y5m, started finger feeding herself at 2y7m (just a few weeks ago!!!). She has no words and very few sounds. We hear "Mmm" or "Gr" about once every couple weeks. She is excessively oral - everything is always in her mouth. If she can't get something to her mouth, she takes her mouth to it. She licks and bites everything! She has very poor fine motor control, but enough to be able to pick things up. (She does not bang or stack blocks, or put objects in containers.) She is generally very pleasant. She does not follow simple comands like "come here" or "get the toy" and we really are not sure what her cognitive abilities are. She has made incredible strides in the last year though, and seeing as we don't know what is causing her problems, we don't know what she is capable of. Not knowing also makes me worry about our new baby on the way. But by not knowing, there remains the hope that it will all go away. Her neuro looked at me like I had 100 heads when I said that. Can't ever give up hope...
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