Needing experts

[alizesmom]

We are coping with 2 more diagnoses in our family. First eosinophilic colitis. Second Arnold-Chiari Malformtion 1. I'll take any and all information/advice from you guys. Karen

 

[Earstou]

I have Chiari 1 and have had the decompression surgery. But I didn't have symptoms until my adult years, and I think children present differently. You should check out WACMA and their online support groups. I believe there is one for parents of children with ACM.
I highly recommend researching doctors who specialize in ACM, since many doctors are not very versed in it. My first experience was not good, and I'm so glad I didn't give up and that I kept looking. Dr Oro did my surgery and also has just published a book on Chiari. I haven't seen it yet, but hear it's good.
What symptoms are present, or was the malformation found on an MRI with no symptoms at this time?

 

[oliviansmom17]

My 8 year old daughter has eosinophilic gastroenterocolitis. Where to begin? I'm better at answering questions!

She was diagnosed almost 7 years ago and presently is on formula-only as a challenge this summer. This is probably our third total elimination diet. This one is to make sure she hasn't developed an allergy to the formula.

She's happy and smart, and has lots of friends who are supportive and cool about the formula thing. You would never know...the double-edged sword of EC. I say that because no one looking at her would think she was struggling- just ask the legislators in our state!

You can PM me if you'd like to discuss more privately.

It's going to be o-kay

 

[LauraVV]

There are several eos lists where one can get support. My son has eos in his esophagus and my daughter is thought to have eos also.

 

[oliviansmom17]

There are several eos lists where one can get support. My son has eos in his esophagus and my daughter is thought to have eos also.

I know of naspghan.org and apfed.org if that helps!

 

[alizesmom]

I have Chiari 1 and have had the decompression surgery. But I didn't have symptoms until my adult years, and I think children present differently. You should check out WACMA and their online support groups. I believe there is one for parents of children with ACM.
I highly recommend researching doctors who specialize in ACM, since many doctors are not very versed in it. My first experience was not good, and I'm so glad I didn't give up and that I kept looking. Dr Oro did my surgery and also has just published a book on Chiari. I haven't seen it yet, but hear it's good.
What symptoms are present, or was the malformation found on an MRI with no symptoms at this time?

The chiari was found on incidental MRI however my daughter, Ciara (age 3) is so involved medically that I have no idea if any of her problems could be caused by the malformation or something else. On top of that she is unable to communicate at this time.

 

[alizesmom]

My 8 year old daughter has eosinophilic gastroenterocolitis. Where to begin? I'm better at answering questions!

She was diagnosed almost 7 years ago and presently is on formula-only as a challenge this summer. This is probably our third total elimination diet. This one is to make sure she hasn't developed an allergy to the formula.

She's happy and smart, and has lots of friends who are supportive and cool about the formula thing. You would never know...the double-edged sword of EC. I say that because no one looking at her would think she was struggling- just ask the legislators in our state!

You can PM me if you'd like to discuss more privately.

It's going to be o-kay

Alize (age 5) was started on elecare recently. He only gets fed by g-tube. My biggest problem is that he has CP and like many CP kids the muscle tone of his bowel makes it difficult for him to have a BM so he needs to take something to make him go. Because of the colitis anything I give him causes distention and pain (he can't tell me but he cries). Any ideas? Karen

 

[oliviansmom17]

Alize (age 5) was started on elecare recently. He only gets fed by g-tube. My biggest problem is that he has CP and like many CP kids the muscle tone of his bowel makes it difficult for him to have a BM so he needs to take something to make him go. Because of the colitis anything I give him causes distention and pain (he can't tell me but he cries). Any ideas? Karen

By anything do you mean pharmaceutically or food-wise? Can he tolerate any stool-softening foods? Fruit- even if processed?
Liv, at one point, could do pears to off-set the formula-induced constipation. But originally we used MiraLax...
If you are just starting down the Eos road, it takes quite a bit of time and trial-and-error before you can figure out tigger foods. I'm not sure how new to the diagnosis you are, or what you're dr./nutritionist has tried...

 

[LauraVV]

Some groups:

ACED-subscribe@yahoogroups.com
EosMitoKids-subscribe@yahoogroups.com
EosinophilicDisordersOfTheBayArea-subscribe@yahoogroups.com

 

[Earstou]

The chiari was found on incidental MRI however my daughter, Ciara (age 3) is so involved medically that I have no idea if any of her problems could be caused by the malformation or something else. On top of that she is unable to communicate at this time.

When my Chiari was found, it was called "incidental" by the radiologist. But I ended up researching and finding an expert, who knew so much about Chiari. For me, my symptoms were dizziness, headaches and fatigue. As time went on, I also had fibromyalgia, my legs would feel like they were buzzing, and I had body jerks, like my arm would jerk and hit my husband standing beside me. Unfortunately, it took 13 years to be diagnosed and damage was done during this time, so surgery did not take all this away. But it did greatly improve things. I know someone who only had headaches and was diagnosed quickly, had surgery, and now is symptom free.
Chiari can be progressive, and recently I have started dealing with hearing loss and loss of muscle strength, which is affecting my breathing and, to a lesser extent, my swallowing.
It can be very difficult to determine if Chiari is causing problems, but my biggest problem has been the lack of knowledge by doctors. I know way more than my local doctors. My only doctor that has any experience has been my neurosurgeon, who unfortunately lives and works over 500 miles away from me! I end up emailing him for advice!!
WACMA has doctor lists if you want to find an Chiari expert, and the support groups can tell you more about the doctors.

 

[alizesmom]

I really appreciate all of the help. Thanks for everything. Karen