My son has had crohns disease for 4 years and has been basically symptom free. He has continued to have decrease in appetite over the past year and falling off the growth chart. The dr is performing a colonoscopy endoscopy and mre tomorrow. She is already talking remicade with us. It seems so drastic. He has been on iron and pentasa since diagnosis.
just looking for encouragement or understanding why we would put him one a cancer risk drug when he has no pain, no blood, no other symptoms. Could delayed growth caused from something else?
Any advice?
Reply posted for indianamom.
I agree, these big time meds are scary. My daughter suffered w/ "failure to thrive" for a few years prior to being dx and had a difficult time even getting on the charts. We worked with her dr and nutritionist and worked hard adding calories to each and every meal and "safe" snacks in between. Once we figured out which foods were agreeable (used a food journal) it worked.
My daughter is now in the 50 percentile for weight and 75 for height.....hang in there; it takes time and patience.
In your child's case, your doc should be able to give definitive answers once the scope is done and biopsies are returned from the lab and reads his current blood work crp levels, sed rate, cbc, etc.
You may want to get a second opinion prior to taking the remicade step, no dr. can hold that against you.
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