Looking for a pediatric hospital knowledgeable about eosinophilic disorders (preferably in the Midwest) - Mothering Forums

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#1 of 7 Old 03-12-2012, 06:53 AM - Thread Starter
 
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I spent last night going through the eosinophilic threads and am a little overwhelmed with information.

 

My nephew (almost 3yo) spent weeks in and out of the hospital, saw teams of specialists, and they still cannot diagnose his illness.  Unlike so many of the posts I’ve read, my nephew’s symptoms started with severe bladder spasms not stomach or esophagus issues.  They have ruled out everything that would normally cause bladder spasms and my sister believes her son may have an eosinophilic disorder.

 

So, I have two questions…

  1.  Any hospital/doctor suggestions?  (She is currently at Children’s Memorial in Chicago.)
  2. Has anyone’s child had bladder issues in connection with eosinophilic disorders?

 

TIA

 

 

 

I wasn't sure if this should be in Allergies, Health and Healing, or SN parenting. 

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#2 of 7 Old 03-12-2012, 09:53 AM
 
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Let me double check but I *think* there clinic specializing in EoE at Cincinnati CH.  If your sister is near Chicago, it's not super close but may be worth the trip.  Also, you may want to point her to go over to Kids with Food Allergies. They have an entire forum devoted to EoE.  She may get more direction and answers about the bladder thing there.

 

Hugs, it's really frustrating trying to understand all this stuff :(

 

ETA:  It IS Cinci's Children's Hospital that has a EoE clinic.  Also, has she checked into Celiac disease?  

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#3 of 7 Old 03-12-2012, 10:33 AM - Thread Starter
 
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scsigrl,

Thank you!

I was re-reading threads this morning and saw that Cincinnati has a eosinophilic clinic.  I sent her the link and I believe she has already contacted them. 

The doctors say it is not celiac.

 

I'll let her know about kidswithfoodallergies.

 

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#4 of 7 Old 03-14-2012, 04:18 PM
 
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My son has Eosinophilic Esophagitis, an EGID (eosinophilic gastrointestinal disorder).  We travel 3 hours to go to Cincinnati Children's Hospital, which has one of the top eosinophilic clinics in the country.  It's the Cincinnati Center for Eosinophilic Disorders (CCED).  We found that our first experience at another hospital (in Indianapolis) did not give us satisfactory experiences.

 

Has he had any testing done?  To diagnose an EGID, they have to take a biopsy.  The knowledge about EGIDS ranges from knowing some (eosinophilic esophagitis) to not knowing much at all (ones like eosinophilic colitis).

 

There is a hospital in Chicago that I believe has experience with EGIDs....I believe it is Children's Memorial Hospital? 

 

I haven't heard about bladder spasms before...

 

Definitely check out the Kids with Food Allergies - it has been VERY helpful for me and there are lots of knowledgeable mamas over there!

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#5 of 7 Old 03-14-2012, 05:15 PM - Thread Starter
 
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Devon,

Thank you.

She believes it is eosinophilic cystitis (EC).

She has not heard back from Cincinnati Children's but she has an appt. scheduled at Mayo. 

 

She has been working with Children's Memorial in Chicago.  They've tested for everything but this.  They told her it could not be food allergies and they didn't seem to know much/anything about IC.  She's seen just about every type of specialist and her son has been in the hospital several times for ~6 days each time.

 

 

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#6 of 7 Old 03-17-2012, 04:03 AM
 
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My son was diagnosed at Johns Hopkins with EE back in 2005. It's been a long journey to learn about it and get it under control but he is now a very health 8 year old (in vacation with me in Puerto Rico at the moment).

 

We used to go to Cinci Children's and it is true it is a leading EE hospital. Lately, we've switched to a new clinic at U of M (just google U of M GI and they would be able to set you up with the EE clinic). I've been very impressed with their EE team. Not sure if it's much closer but I would definitely give them a high recommendation at U of M...

 

Also you may want to check out the APFED website. I have gotten involved with that group over the years and it has been immeasurably helpful. Good luck.

 

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#7 of 7 Old 03-17-2012, 06:31 AM - Thread Starter
 
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momintoldedo,

Thank you for your response.

My sister heard back from Cincinnati Children's; they said they do not treat EC.  (although their website lists it in the EE clinic)

 

She hasn't rec'd a diagnosis...based upon his symptoms and the fact that they've ruled out so much at Children's Mem, she believes it is EC.  She has an appointment at Mayo in April, but I will tell her about U of M.

 

She has been on the APFED website.  I believe she has also joined one or two online groups looking for answers. (She is very private and has never been part of an online community so she was hesitant and uncomfortable.  My son was diagnosed with a rare condition years ago and I explained to her that joining an online community of others with the disease can be so helpful.  It helped us to find the best specialist in the country and to learn more about the long term affects of the disease.  Things we did not hear from our neurologists at three major hospitals.)

 

 

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