Tuesday, July 3, 2007

So things are seeming to fall into place with the move and services for the kids. It is so difficult to move to a new area let alone with 2 special needs kids and all of the services that go along with it. Also Janessa is nervous about going to a new school and meeting friends. If she is anything like me, she will make friends immediately. Anyone who knows me, knows I will talk to a tree even though it doesn't talk back.

So many of you may have heard me mention Cyclic Vomitting Syndrome (CVS) this is a condition that Isaiah suffers from about every couple of weeks. It is basically described as migranes. He get nausea, light intolerance, listless due to severe retching in his case b/c he cannot vomit. This lasts up to a few days where he basically has dry heaves and is so tired that he just lays there and drools. He has been on just about every med. that is known to help with this but to no avail. I actually found a great article online last night from a dr. who specializes in CVS with mito. kids. Hoping to get some tips to help my man. He responded promptly which I was pleasantly surprised. However, he said in a nutshell that he has only had 4 cases out of hundreds that have not responded to meds. So add Isaiah to that list. How discouraging is that. Well don't you know it, today Isaiah started a spell. Poor thing looks horrible. We give him valuim to help him sleep. Please pray that my boy will outgrow this soon.

1 comment:

Anonymous said...

Nikki this website is great. But I was confused about the the CVS meds... Did you mean that only 4 out of hundreds have been positive, so Isaiah does not have chance of being cured??? or did you you mean that only four have not responded so Isaiah has a good chance at the meds.... Oh and this is from your sister, because I was not sure where to get the password from or the webpage , it was eaiser to respond as anonymous

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