Friday, October 2, 2009

still alive...

first of all i want to apologize for not updating sooner. secondly i would like to thank all of the parents who left comments for us during our week long hospital stay...i appreciate the support we get from everyone who reads this blog and cares about milo, even though they may not have ever met him. the suggestions and information from parents who are going through or have gone through similar situations with their kids means so much to us, that information is so valuable. thank you.

the basic consensus from the doctors at the hospital, (and milo's doctors since being released) is that milo is dealing with something called cyclic vomiting syndrome. i was skeptical at first, but after reading up on it, talking to his doctors, and of course reading some blogs of parents dealing with it first hand, the diagnosis really fits. so now this monster has a name, but so far we have not controlled it one little bit. right now his cycles are lasting about five days with only about three days of feeling well before another one starts. it sucks. he is on periactin which for some people can help, but it doesn't work on everyone, and so far doesn't seem to be helping. one of the best ways to cut down on the frequency of episodes is to figure out what is triggering them and avoid it...but we haven't figured it out so far.

if you want to read a couple of really great articles about cyclic vomiting syndrome read these:

the truth about cyclic vomiting syndrome, by michelle from 5 minutes for special needs, and in the life of a child.

the disease in disguise, by joyce.

also, check out the cvsa.

i am really drained, but trying to stay positive.

3 comments:

Katy said...

Staying positive can be hard when you're completely worn out from a hospital adventure. Did they give you any suggestions for possible triggers? This is so hard and I'll be praying that you guys get some answers soon.

sarah sped said...

sweet sweet boy. he needs a snuggle from auntie... :)

POPPY said...

Looking forward to seeing Milo (and his mommy & daddy) on Thursday Love Poppy

 
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