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Crohn's Disease Forum » Parents of Kids with IBD » So frustrated with drs!


05-29-2017, 05:04 PM   #1
Mumoftwouk
 
Join Date: Aug 2016
Location: Lincoln, United Kingdom
So frustrated with drs!

I posted for the first time last year, when in August my 4 year old daughter was given the diagnosis of Crohn's disease. Having been unwell for a couple of years it was still a shock and the doctors still said she isn't typical for various reasons (never had high calprotectin for one). Our specialist hospital said she was complicated and passed her tests Great Ormond Street where the professor put her on sulphasalazine and pentasa. For the first time in a long long time she was pain and symptom free for a whole seven weeks!
Then she caught shingles, followed by Influenza A and was hospitalised for a week as she was exhausted. Since then we haven't been able to get back on top of her worsening tummy pain again.
Two weeks ago we saw a new doctor at Sheffield (as her usual doc was on holiday). He wasn't happy with the meds she was on and decided to introduce mesalazine alongside the sulphasalazine. Now, two weeks later and she is worse than before again! Had to have oramorph tonight as she was rolling around in pain...
Any suggestions please... oh and they have changed her diagnosis again to an unusual allergic bowel disease!
05-29-2017, 05:38 PM   #2
Maya142
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Is it possible to get a second opinion?

I'm not sure what you mean by allergic bowel disease. I am going to tag my little penguin, since she may know more. Do you mean an EGID?

Does your kiddo still have an IBD (Crohn's) diagnosis? Her treatment will depend on her diagnosis. Typically if something like sulfasalazine or mesalazine does not work, they go on to try an immunomodulator, like 6MP or Methotrexate. That is usually the next step and after that, biologics.

An illness (such as the flu) can trigger a flare. Could she do Exclusive Enteral nutrition (EEN - 100% formula, no food) to get things under control? It can induce remission, just like steroids. It could also help with the pain.

Opioids like oramorph (morphine) tend not to be used for IBD because they can slow down the bowel and that causes constipation, which can cause more pain. We use anti-spasmodics, like Levsin (hyoscyamine) very occasionally which can help with cramping. Bentyl is another anti-spasmodic used in the US.
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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
05-29-2017, 05:39 PM   #3
my little penguin
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Do you mean eosinophilia gastrointestinal disease (Egid )?
That is treated differently
Some feel it's a precursor to Crohns

http://apfed.org/resources/for-caregivers/

https://community.kidswithfoodallerg...ies-and-gerd-1
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05-29-2017, 05:45 PM   #4
ronroush7
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I would also suggest getting a second opinion.
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Diagnosed in 1990. On Humira, Imuran, Gabapentin, Colestipol, Synthroid, Lialda. Resection in April of 2010. Allergic to Remicade, Penicillin, Flagyl, Doxycycline. Thyroid issues and psoriasis and neuropathy and mild cerebral palsy. Mild arthritis in my lower back.
05-30-2017, 04:50 PM   #5
Mumoftwouk
 
Join Date: Aug 2016
Location: Lincoln, United Kingdom
We have had a second opinion at gosh, who put her on the pentasa and sulphasalazine. He put her back in the care of Sheffield as they are closer whilst we await the results of the genetic testing. We were originally given the crohns diagnosis, then they changed it to allergic bowel disease... he said she is unusual and complex, but that doesn't help me to understand any of it! It seems like the mesalazine is making it worse so waiting to hear back from them today again. Hate seeing her in pain, she slept this afternoon when it all got too much which isn't like her at all
05-30-2017, 08:00 PM   #6
DanceMom
Senior Member
Has she had any immune testing done? If not, that might be something to explore.
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A is 12

Diagnoses: Immune Dysfunction, Hypogammaglobulinemia, Asthma, Allergies

Treatment: Hizentra, Flovent, Zyrtec, Cellcept
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