May I join in here?

[DeChRi]

I was a member of MDC for years and years when I just had DD1,   When she was 8 yrs old I had DD2, then 2 years later came DD3.  The two youngest are now 3.5 and 15 months.  I just found I am expecting (surprise) #4.  Without giving a long story, my youngest two have eosinophilic gastrointestinal disorder.  Basically, their immune system views food as a parasite and sends a certain type of white blood cell (eosinophils) to attack.  This causes damage to the GI tract with symptoms such as:

• Nausea or Vomiting
• Diarrhea
• Failure to thrive (poor growth or weight loss)
• Abdominal or chest pain
• Reflux that does not respond to usual therapy (which includes proton pump inhibitors, a medicine which stops acid production)
• Dysphagia (Difficulty swallowing)
• Food impactions (food gets stuck in the throat)
• Gastroparesis (Delayed emptying of the stomach)
• Anorexia (poor appetite)
• Bloating
• Anemia
• Blood in the stool
• Malnutrition
• Difficulty sleeping

My now 3 yr old was a chronic vomiter but no where near as bad as DD3, as a baby.  DD2 got hit hard around age two and would double over in pain, wake screaming, be unable to swallow, refuse eating, was chronically fatigued.  DD3 came and screamed form the start.  After months of TEDs I had to move her to a prescription amino acid powder for her to function.  She is 15 months now and still spends hours vomiting and writhing on the floor in pain, despite being on no food.

It has caused some delays in my youngest, and needs for feeding and likely speech therapy.  My oldest is doing okay, but we are still fighting to get her symptom free.  We have had to take her out of preschool as well.  As a family it is tough not being able to sit at the dinner table, go to grandma's for dinner, go out to eat, have a birthday cake, eat watermelon after my oldest's ball games, nothing food related.  It is very isolating and people do not understand.  Every day is a delicate balance of keeping them away from the foods they have to so they do not become more ill.  They wake sick all the time and I have not slept two hours straight since a year ago in May. 

We leave tomorrow for a week at a hospital8 hours form here  that has an Eosinophilic Disease program, with the best of the best.  They will spend a week with GI's Allergist, Immunology, Feeding Teams, Nutritionists, Behavioral Health, and more. THey will each have upper scopes and colonoscopies to get biopsies, and the youngest will have a pH Probe placed.  We are hoping for a better plan when we leave.

I just often feel like not many people get what a dominating force it is to have a child with special needs.  So I am planting myself here. :-)

[Emmeline II]

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Google search "support eosinophilic gastrointestinal disorder"

http://www.google.com/search?q=support+eosinophilic+gastrointestinal+disorder&ie=utf-8&oe=utf-8&aq=t&rls=org.mozilla:en-US:official&client=firefox-a

[beachcomber]

Hugs and support and warm welcome to you. I have no experience with what you and your kids are going through, but wanted to let you know that you'll find friendship here.

[LynnS6]

there is a mom on here whose younger child has the same thing, I'm pretty sure-- if you edit your title to include the diagnosis in the title ,maybe she'll see it and respond (I know she's quite busy from other posts she's made). It is a struggle, and I hope you can get some answers so that your poor babies aren't in pain.

[KimPM]

Yes, try searching MDC for "eosinophilic" and you will see quite a number of threads, and likely be able to connect with other moms going through the same thing.

While I don't think we are dealing with an eosinophilic disorder, I totally get not being able to eat with everyone else and other people not understanding that. Each of the three of us has different food allergies and sensitivities - many of them. And my DS has serious texture aversion to food on top of that. DH also has gastroparesis (extremely slow food digestion and is on a mostly liquid diet with a carefully selected few other foods. So basically we can't eat with everyone else either, and each of the three of us is eating different things. It's amazing how much social stuff out there involves food. It's kind of hard to socialize without having food involved somehow.

I hope and pray that you get a reprieve with your upcoming 4th child, as well as some help with all the rest.
Edited by KimPM - 8/25/11 at 5:39am

[QueenOfTheMeadow]

And welcome! I hope you can find the support and information you need here.