Monday, April 23, 2012

Still waiting and another fever episode

Since Brayden's hospital "adventure" in February he's been "on schedule" with his fever episodes. They usually occur every 3-4 weeks and last the 5-7 days. Fortunately the first episode after the hospital trips was actually pretty moderate. It did last the full 7 days but it was fairly low grade for him keeping around 102.  This last episode was back to its usual. Keeping his temp with meds anywhere from 103 to 105.5 and lasted about 6 days.  sigh :( At this point I don't even really bother calling the pedes unless I REALLY can't keep it under control. Sadly to say "under control" for us is making sure it doesn't hit 106 while we are dosing him with meds every 3 hrs.  I know calling the pedes isn't going to do anything since there is nothing they can do other than run more testing like a urinalysis or checking for ear/throat infections. Since he has no other symptoms I know it's not worth torturing him.

We are still waiting for the genetic testing to come back. The dr said it usually takes up to the full 8 weeks for it to come back.  Which puts us to May 3rd, Jason's birthday. So hopefully not too much longer. Not that I WANT it to definitely be one of genetic forms of Periodic Fever Syndrome but it would be nice to have an official diagnosis and find a way to start treating it. I know I've said it over and over but i REALLY hate dosing him with Tylenol/Advil every 3 hours for 5-7 days at a time every 4 weeks. There is NO way that is good/healthy for his body and it makes me worry about the long term affects. I don't have a choice when it comes down to it b/c if I don't he could have febrile seizures. We have been SO lucky it hasn't come down to that yet, especially when his fever is over 106 AFTER having meds in him.
I am excited for his 18 month pedes appointment this Thursday. I'm dying to know how tall he is an how much he weights. He definitely has FINALLY gained some weight and had a big growth spurt a little bit ago so I'm curious where he is in the stats.  He is due for shots, including the MMR he couldn't have at 15 months because he had an ear infection and you can't get MMR if your sick b/c it's a live virus.  I'm definitely not looking forward to that since he always runs a fever post shots but getting vaccinated is more important.  I do want to talk to the pedes about his language and the fever episodes.  I'm greatful he is really smart and understands SO much. He can do two part commands and knows a lot of words and phrases but I'm finding that after every fever epidose he takes a step back for every two steps forward he makes in speaking. He knows and can say things but refuses to talk or use his words. So by the time we get to the next fever episode it's like we are backtracking. I feel really bad, and i know he understands and CAN say things but I think I just worry about the fevers messing with his brain over the long term. Not sure if that makes sense or I'm being overly protective/worried. I guess it's good he's been ahead of schedule with his language development or I would be extra concerned. But it drives me nuts to know he can say things and reverts to grunting and stuff instead of using his words. I'm sure in a year I won't be able to get him to shut up and will be saying the opposite :)

Apparently baths in he middle of the night for 105+ fevers is fun!  

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