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update on Celeste

January 30 2009 at 6:20 PM
Carrie  (no login)

Hi everyone, boy it is sure quiet around here. Sorry I've be gone so long. Life has been so crazy for us this past year. Celeste was also doing so well on the rilonocept that it was like she never had Still's disease. In October we started noticing that she was complaining a bit about her ankles. After Thanksgiving it was like the flood gates opened and we were back to square one. She started running the horribly high fevers again and was in excruciating pain. We had to start her back on very high doses of steroid because no pain meds were helping. Including hydrocodone. She couldn't even move a fraction of an inch w/o suffering. The steroids have helped tremendously. We are trying to wean her off but are not having any success. She is taking a dose of her rilonocept that no one has ever been on. Her rheumy says that there is another drug which is an IV infusion comming out on the market. I don't hold much hope for it working due to how it works. The only thing left at this point is stem cell transplant. I am terrified of that. Dr Punaro also wants her to see an immunologist that she has worked closely with because Celeste's blood is full of eosinophils. Normal range is 0-6% Celeste has 25% which is astronomical. Usually it has to do with allergies but when they reach very high levels they can be associated with other serious illnesses including cancer. I'm sure it is nothing like that but it is still scary to me. Also I don't know if you all remember when we almost lost Celeste in '04. At that time they thought she had sepsis. They now know that she had a serious life threatening illness which is a very rare complication of her disease. It is known as Macrophage Activation Syndrome. Knowing what I know now about this illness I realize what a miracle Celeste is. The doctors thought that it must not have been that since she survived it after it reached the point where there is multiple organ failure. In September she started going into this again which was very scary. We now know that we have to watch her very closely this includes labs. She was getting labs done every few day for a few months which was crazy. I had to take a month off from work because Dr Punaro wanted me to be able to see any subtle changes in her and she was unable to be in school. She is having a good day today so that is wonderful. Sorry this is so long. Again I am sorry I've been awol for so long. I hope to be able to check out the board every couple of days.

Hope all are well

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