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Mom Looking for Suggestions


Mon, January 04, 2010 3:09 PM

My 15 yr old son was diagnosed with Crohns a year ago, although he has been sick since he was 11. He had a blockage and required surgery 4 months ago. He had a foot of his small intestine removed, but he had not gotten better since the surgery, and a month ago he ended up back in the hospital and it was discovered that the surgeon missed the blockage by 2 feet. He has since undergone two colonoscopies where his GI doc attempted to stretch the stricture, but he still has alot of pain and nausea almost on a daily basis. We are very limited on our access to Pediatric GI docs in our State.

Needless to say, his schooling has sufferred. I was wondering if anyone has any ideas about schooling, good hospitals for pediatric crohns patients, etc.

I am becoming increasingly frustrated with the situation and also very concerned about my son getting his education and also his medical care. Really looking for the bright spot in this whole situation.

FPO nmmom2
Joined Oct 16, 2008

Wed, February 10, 2010 5:05 PM

 Reply posted for nmmom2.

I don't know where you live, but if it is anywhere near New York City, I highly recommend Mount Sinai Hospital. They have a pediatric gastroenterology department with several experienced doctors.  People come from far away to see them.  My 11 year old son was diagnosed with CD last year, and I take him to Mt. Sinai. They have been wonderful helping us get through this first year.

If you don't live near NY, I agree with the other person who suggested calling a local CCFA chapter for a recommendation on the nearest doctor/hospital with a good reputaion treating kids with IBD.  It is so important to get treatment you can trust.

Hope things get better soon for your child. 

FPO raquelita
Joined Dec 28, 2009

Mon, January 11, 2010 9:53 AM

Mom Looking for SuggestionsHello,

We have been very happy with a hosp in Iowa and Dr. E!!
My son has ulcerative colitis and we switched to Iowa City after we did not like the direction the doctors in Peoria were heading during my sons flare and hospitalization.

I cannot say enough good things about the hospital in Iowa!!!

Diane

FPO diane22
Joined May 6, 2009

Tue, January 05, 2010 1:00 AM

 Reply posted for nmmom2.

Missed the blockage by two feet!!    CRAZY!!!   I can't blame you for not having any confidence in this doc.

I'm not sure where you live, but would recommend you check with your local CCFA office for a local recommendation. 

As for your son's education, there is a 504 Template located on this site under "Kids & Teens" section that can guide you, along with your child's school system, so that his education doesn't suffer. 

I know it is hard to do, but try keeping as positive as possible.   Once you get in the right hands they should be able to relieve your child's pain and get you on the road to recovery!

All my best.

Lizzies Mom

FPO lizzies mom
Joined Sep 9, 2009

Mon, January 11, 2010 9:44 AM

Mom Looking for SuggestionsMy son is 4 and has crohns.  We love the hospital in MN.  We have traveled there a couple of times but they also help to manage if your local doctors will not - you can get labs and med locally and all of it can be sent through them so your local is basically a puppet.  I know how frustrating it can be to feel like your doctor is sinking and this helped us out.

FPO eli mom
Joined Oct 30, 2009

Mon, January 04, 2010 7:55 PM

 Reply posted for nmmom2.

I to have a 15 year old son diagnosed in sep. 09.  Since then he has been hospitalized and missed many school days due to his illness.  We have decided to home school him until he gets better.  check with your school district and and ask about their home schooling program.  My school district in Simi Valley, Ca has been very good.  They send a teacher twice a week to work with him. This is a totally free service because it is part of the puplic school system.  As far as finding a good Gi, check with this web site under" find physicians"  I hope your son gets well son. 

 

FPO dmstern8
Joined Sep 23, 2009

Mon, January 11, 2010 9:47 AM

Mom Looking for SuggestionsThe hospital in Phoenix and the affiliated Pediatric Gastroenterology group are great.  Not sure where you are though.......  Dont give up!

FPO azmom
Joined Jul 20, 2009

Mon, January 11, 2010 9:50 AM

Mom Looking for SuggestionsI dont know where you live. We are in North Carolina and go to the Pediatric GI Clinic at a Hospital in NC. They are great!!! My daughter has been in the hospital twice now, and the staff on  the Pediatric GI floor are terrific! Good luck in you search.

FPO terry5116
Joined Sep 11, 2009

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