Re: Digest Number 2805

[Guest guest]

sorry for putting everything in one post but here you go: Re: IVIG or gamma globulin:My boys have received infusions every 3-4 weeks for the last 4+ years. They never get viruses or normal childhood illnesses anymore. I think zach had one runny nose in the last 4 years. Dr. Cohen is actually the one who recommended it. They get a very high dose for autoimmune disease so it is about 5 times the dose for immune deficiency. they do, however, also have a B cell immune deficiency with an inability to make antibodies to many of their immunizations so either way they needed it. The most helpful diagnostic testing was:the HISS panel which looks at the subclasses of IGg and not just the total number. It also looks at the antibody titers to immunizations White cell number and function studies.Re: Taking kids out of school for Make A Wish Audrey and her entire family deserve this time together and I cannot imagine any court of low won't stand behind Amie if she wants to take her 1st grader out of school for this. Our school district was 200% supportive when we took my then 4th graders and then sophomore in highschool out for Sam's MAW trip to Disney. Thank God we went as Sam has not been able to travel for the last 2 years. I have these enduring memories of him laughing and singing and dancing and just pure joy on his sweet face as he spent 6 days with his siblings! It is something I treasure in my heart and our entire family looks back on that with gratitude that we did it when we could. Eyes:One of my children has this issue with his eyes where he can not move them up except with a lot of concentration. When he tries to move them down they get "stuck" in his words and you can see how they do in fact stick and then wiggle (nystagmus is the technical term). That is called opthalmoplegia. My 2nd son is also unable to move his eyes up. In addition when he is in a "mitochondrial crisis" his pupils will often become fixed and dilated, non responsive to light, as if he has sustained brain damage. We used to panic and send him off the floor for a head CT scan but after he did it several times and the CT was always ok we realized it was his body responding to an acute energy crisis. Anne