:sign0144: Hello All: I am acting as the voice for my 16 year old son, RJ, who was diagnosed with indeterminate colitis but docs were leaning towards UC in December 2009. As we journeyed from one medicine to the next and one hospital stay to the next which consumed a good part of the year this is what was uncovered: horrific allergic reaction to Remicade 1st dose with 105 fevers for 10 days and severe throat swelling and chest tightening with 2nd dose, Humira weekly injections, and now Cimzia with 10mg methotrexate and still on 20mg Prednisone which we have tapered down to 5mg only to be forced into going back up again. We fear we have reached the end of the rope. My doc is considering revisiting Remicade and told us to be on the look out for trials or perhaps we can get a compassion release for stem cell or some other experimental drug. Along this journey my son had very short periods of relief. He developed kidney stones, severe mouth and throat soreness and then the final piece of the puzzle was in June when he had a rectal abscess and was rushed to surgery where at the same time Prednisone did such a number to his face the docs thought he had a staff infection. The docs then formally diagnosed him with Crohn's but I guess it is possible to have both? When I was referred to the forum I was thrilled to read about the promise of stem cell transplantation. I have so many questions to ask about with regard to stem cell transplant, LDN and the benefits of the Elemental diet, SCD Diet, Maker’s diet, the whole gluten subject…. He is severely underweight and of course wants to eat like a 16 year old. I am hoping you can all shed some light on this very mysterious and tricky disease. It has taken its toll on my son as you can imagine at 16 the world is just opening up. His passion is baseball and he is quite good. He has not been back in school since November 2009 and has missed out on countless tournaments, college showcases, Sweet 16’s… life. It’s all very upsetting and frustrating. There is talk of a temporary ileostomy to help rest the colon too…I fear it won’t be temporary…and I worry that his colon might be too far gone as we had also journeyed to Boston children’s in April to discuss the use of Tacrolimus as the docs were shocked to see his colonoscopy slides and thought he was a prime candidate for it. That was when they thought it more to be UC. My family is frightened and confused…any and all input is greatly appreciated. Hoping for some insight and someone RJ might open up to and talk to… ☺ thank you:sign0085:
Stacy (RJ's mom)
Oh…one more puzzle piece. In February of 2007 RJ had viral meningitis. Later he developed vitiligo (a tiny patch on his chin) and several specialists later, a doc diagnosed him as perhaps having VKH instead (Vogt- Koyanagi Harada Syndrome), which mirrors same symptoms as viral meningitis but with definitive development of Vitiligo….docs believe this was the “environmental” piece to developing IBD…. sorry for the lengthy intro!
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Dx Dec 2009: Indeterminate colitis/UC? DX June 2010: Crohns
Remicade, Humira, Cimzia, Vancomycin, Flagyl, Cipro, Unisyn
Current Meds: Cimzia, Methotrexate 10mg, Prednisone 20mg, Flagyl, Proctofoam
Supps: Vit D, Fish Oil Multi vitamin,Liquid Cal, Mag, Zinc, VSL #3, Iron, Folic Acid, B12, Calcium Gummies
Stacy (RJ's mom)
Oh…one more puzzle piece. In February of 2007 RJ had viral meningitis. Later he developed vitiligo (a tiny patch on his chin) and several specialists later, a doc diagnosed him as perhaps having VKH instead (Vogt- Koyanagi Harada Syndrome), which mirrors same symptoms as viral meningitis but with definitive development of Vitiligo….docs believe this was the “environmental” piece to developing IBD…. sorry for the lengthy intro!
_______________________________________________________________________
Dx Dec 2009: Indeterminate colitis/UC? DX June 2010: Crohns
Remicade, Humira, Cimzia, Vancomycin, Flagyl, Cipro, Unisyn
Current Meds: Cimzia, Methotrexate 10mg, Prednisone 20mg, Flagyl, Proctofoam
Supps: Vit D, Fish Oil Multi vitamin,Liquid Cal, Mag, Zinc, VSL #3, Iron, Folic Acid, B12, Calcium Gummies
