Mark's Medical Update

Mark has had several appointments at the Calgary Children's Hospital recently. His reduced mobility/weight bearing as well as the ketogenic diet for seizures both combine to prevent proper calcium absorption, and make for weak bones. His bone density was recently tested and he also had spinal Xrays. It turns out that infact his bone density is very low and that he already has 2 compression fractures in his spine. This past week we started a treatment to improve bone density. There is a medication--pomidronate--that they give by IV infusion every three months that strengthens bones. He had his first infusion on Thursday and hopefully in time, he can achieve better bone density and restore his spine to its proper structure.
Also, as you may know Mark had hip surgery in November 2007. His physiotherapist identified reduced range of motion and pain in his left him and so we arranged a visit with the surgeon. It turns out that despite the surgery his left hip is again coming out of the socket and will probably need to be operated on again...though the dr. said we could wait a while. In addition, the hardware from the last surgery seem to be rubbing and causing pain. Its all very frustrating
Mark has been on the ketogenic diet for over 5 years now, and it has mostly controlled his seizures. In particular, in the last 18 months he has been seizure-free. His neurologist now wants to wean him off the diet. Some kids are able to come off the diet and remain seizure-free while others are able to come off the diet and have their seizures controlled with one or two medications. Since Mark is experiencing significant side effects in terms of bone strength, the neurologists feel it is time to try these other options. We will probably start weaning the diet in the next couple of weeks.
There is an irony with a child like Mark. That is, that although he is making developmental gains--albeit very slowly--over time, the effects of the brain injury on his physical body increase. He is such a sweet little guy and we love him a lot. May God have mercy on this child and minimize his suffering in mortality.