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| May 2005 May 2 We are just nearing our second week on the ACTH. Jacob has had bloodwork twice a week and all tests so far have come back normal, this has been a relief. He has been spilling glucose in his urine a little, and we have yet to be able to get a fasting blood surgar on him. Jake's blood pressure has been giving us problems and he had to be put back on the Lasix twice a day, which is helping his body to rid itself of the excess fluid (Jake has gained a little over a kilogram already). We wern't ready for the side effects of the ACTH, Jake has not slept since the second day of treatment, and has been very irritable. Insomnia is a common side effect, and unfortunatly Jake has it. Jacob eats anything and everything and has become very dependant on breastfeeding again. The needles are becoming hard to give Jacob, as soon as he sees me coming with the needle (or if he sees me getting it ready) he is on the run screaming at the top of his lungs "no needle", this is heartbreaking. He will be weaned off of the prednisone by Wednesday of this week and we are hopeful that this will help with the sleep issue and Jakes irritability. Last week was a nightmare (we are walking zombies), and we hope that Jake begins to feel better soon. Jake is due for bloodwork and his IVIG today and will be spending the majority of the day at the Cancer Centre. We will be meeting with Dr Murray this week as well to discuss the effectiveness of the ACTH and whether to keep Jake on it.. May 19 We had a really rough start to the ACTH, but in the last week Jacob has been doing a lot better. He will now sit by himself to have his daily injection (this is a huge break through!), and his mood seems to be improving. The irritability that he was having in the first 3 weeks has decreased, and he is able to enjoy playing outside and doing everything he loves to do. His body has been handling the ACTH really well, all of his bloodwork has been normal, and although we had problems at the start with his blood pressure the addition of the Lasix into the mix has done the trick. Jacob had an evaluation at the Rehabilitation Centre this past Monday for Physical Therapy and Speech Therapy. I am happy to report that Jacob is meeting all of his milestones and is actually ahead in some of the speech areas. This is a major accomplishment and the therapists were amazed considering everything that he has been through in the last year and a half. Although he does have weak hip flexors and muscle tone, there is nothing that we can not work on at home! They will follow Jake every three months to ensure that he does not start to fall behind, because most children with OMS will hit a plateau at around age 4....hopefully these results mean that Jake is the exception! We are really excited that this trend will continue and that Jake will be able to get off all medications by Christmas of this year (this will be when his ACTH protocol will end). We will be heading to CHEO on June 11th for a week of testing, Jakes MIBG scans, MRI and Bone density to ensure that the Neuroblastoma has not returned. This is a scheduled 6 month check-up. |