02-25-2016, 02:15 PM   #1
Concerndmomm's Avatar
Join Date: Feb 2016
Location: Towson, Maryland
My Story

I was last on this Website in 2012 when I was upset that my 8 year old daughter was diagnosed with Crohn's... It has been 4 years since then... I am happy to be back on the site for this Support Group. We tried Holistic alternatives but were not as successful and the doctor's we were dealing with were not receptive at all to our decision, to the point that one of them almost called Child Protective Services on us.
She is currently on Remicade for the past year and seems to be doing very well on it. Her expereince has been by "trial and error" with the medications that she has been on. First it was 6MP and then is was Pentasa. Needless to say, it was a constant battle to advoacte for my child since the Providers were hell-bent on pushing what they thought was right WITHOUT listening to our concerns for OUR child. I am sooooooo glad that she now sees a wonderful Pediatric GI specialist with absolutely wonderful bed manners so to speak... He is very interactive with my daughter and seems to be genuinely concerned about her health and listens to our concerns... It has been a long road but thankfully she is getting the right treatment for now. I wish they had childrens' support groups so that she does not feel isolated going through this... She is a very active soon to be 12 year old girl! I still think she is small for her age but the Doctor says she is within her age range/BMI. I know for a fact that there are a lot of supplements that she is not able to ingest/digest because they have Carragenan which makes her stomach upset...
Glad to be back...
02-25-2016, 04:57 PM   #2
my little penguin
Forum Monitor
Join Date: Apr 2012

My Support Groups:
Have you seen our parents group here

Your local ccfa should be able to tell if any members are parents of kids in your area for here to meet kids
Camp oasis is another place to meet fellow kiddie crohns patients

As far as weight and growth
For Ds formula as a supplement as worked well over the past four years
He drinks peptamen Jr ( no carragean ) it's semi elemental so easy to absorb the nutrients

Tagging clash
DS - -Crohn's -Stelara -mtx
02-25-2016, 05:28 PM   #3
Forum Monitor
Maya142's Avatar
Hi and welcome back! Check out the parents' group - there is a lot of good info there.

In terms of supplements, my daughter was on Peptamen Jr and is now on Neocate. She was unable to gain weight without supplementing with shakes. She initially drank her shakes, but had trouble drinking enough to gain weight, so we switched to using an NG tube. Learning to use the tube was a bit intimidating and the first two days were rough, but I was shocked at how quickly she got good at inserting it herself. She inserted it at night, and then hooked herself up to a pump and by the morning her feeds were done and she pulled it out and went to school. That way, no one at school had to know.

In terms of forumlas, Peptamen Jr and Neocate do not have carrageenan. But they are less palatable that formulas like Boost kids and Ensure or Pediasure. So kids have more trouble drinking them (though some are definitely able to drink them).

I know the Ensure powder does not have Carrageenan, so you could try that for your daughter. It is only available in vanilla, as far as I know.

Your local children's hospital may have a support group for kids. Otherwise CCFA and Camp Oasis are good resources.

My kiddo also did very well on Remicade.

Good luck!
Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
02-26-2016, 09:15 AM   #4
Jmrogers4's Avatar
Yes, CCFA has many groups as well as activities for kids/teens in most areas. Can't speak highly enough about Camp Oasis. We call it therapy for my child, this will be his 7th time and final time as a camper this summer. Although he does look forward to being a counselor at camp. He has met some fantastic kids with IBD that he stays in touch with throughout the year. It's his support group.
We are struggling with weight as well but think it's more a matter of adjusting the dosage/timing of his infusion, luckily his GI listens to our concerns and agrees, now if we can only get the insurance company to agree

Mom to Jack (18) dx Crohn's 2/2010
Remicade - started 1/9/14; 7.5ml/kg every 6 weeks
Past meds: Imuran/Azathioprine; allopurinol; methotrexate; LDN; Prednisone; Apriso; Pentasa; EEN

Husband dx Crohn's 3/1993
currently none due to liver issues

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