My 6 year old daughter was born with tyrosinemia type 1. She had diarrhea and bloody stools for 10 days, a month back. She was tested for many things, and everything came back normal, except her calprotectin level was 1250 while she had loose and bloody stools. She was admitted and had a cleanse and got an endoscopy done, and it showed lots of inflammation. She was put on a high dosage of steroids and Sulfasalazine for five weeks. The bleeding has stopped, and we weaned off the steroids.
The biopsy results said it was IBD. Two weeks ago, she had her calprotectin level checked again, and it was in the 200. This week, we checked it again, and it was 39. I will include pictures of the biopsy results and pictures of the endoscopy. Her doctor said that the reports are not 100 % fine, and it is either UC or Crohn's. The doctor said that further down the line, we would be able to know which one she has. I would love to get a second opinion on what it could be.
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Thank you for the reply. She is currently taking 100 mg two times a day of Sulfasalazine and 20 mg of Nitisinone. Her enzyme levels all have been great, no problems. Her doctors are not wanting to do a liver transplant because she has been doing so well with medication and diet. At 3 years old, she had her gallbladder removed, and G-tube inserted because she stopped drinking her tyrosinemia formula for over a year. At 2, she had kidney stones.
Could you please tell me more about Crohn's disease and growth retardation? Lately, I have seen that she has low-grade fevers and is very tired, especially in her eyes. Is this due to medication or Crohn's disease? What in the endoscopy do you see that it can be Crohn's and not UC? Now that her calprotectin has come down, and if we stop the medicines, will it go back up? She only had one episode of bloody stools for 10 days. It never happened before. Does Crohn's have anything to do with tyrosinemia? Also, if her levels are back to normal and when we do the endoscopy again, and everything is back to normal, why do I need to stay on medication? Could this inflammation and her high calprotectin levels be caused by something else?
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