8/16/03
After our last attempt at weaning her off the ACTH Madalin relapsed. We were at .1 every 3 days when the symptoms started.. Within two weeks she was unable to walk and couldn't sit without support. Madalin is almost 4 and reverted back to when she first developed the OMS at 16 months. After the relapse she started crying uncontrolably most of the day. Even after doing her IVIG two weeks early she just cried. We up'ed the ACTH to .4 everyday for two weeks. Only in the last few days has she really started playing again. She is now on two different types of chemo. We thought she was going into remission only to realize without the ACTH she would be back to how she was in the beginning. Her doctor said being she has been on ACTH for 2 1/2 years and has had 18 IVIG infusions and is still not in remission, we need to do something else. Now she takes two 2.5 mg tablets of Methotrexate (chemo) once a week A Purinethol (chemo) 25 mg tablet daily plus Zantac twice a day for her stomache because of the chemo. She also has to be on an antibiotic (Bactrum) because of the risks of being on chemo. She is still on Hydrochlorthiazide for her blood pressure because of the ACTH. In the two weeks we went up on the ACTH, she has already swelled up. She starts school next week and I don't think her new school clothes are going to fit. She will be having her IVIG again soon and it makes me wonder- how long are we going to do this? Isn't it bad enough we have to shove pills and medicine down her throat all day plus give her all these shots, but to have to go through all these I.V.'s all the time is so hard on her. The infusion takes 7 hours but we are usually in the hospital 12 hours. She hates them and is sort of out of it all day. Hopefully we will eventually see some results from the chemo, until then, we will just let her know how much we love her and we don't want to do these things to her. |
