Flipping the pages back at 9 month's post IVIG?

[Doug]

Ok..

So dd6 was not good about 4 weeks ago upped her abx's for 14 day's,snapped out of it for about a week

went back to school (3 hrs.)I was also there with her because I work in the class room

on Monday's I was in and out of her class room not a problem with her at all

came home she was watching sponge bob and he was going to tie up the crab with "poop on a rope"(bathroom stuff)

and the rest of the day went right out the window.. she woulden't even go to girl scouts and she loves girl scouts she didn't want me to leave and even when I stayed it didn't help she just kept on crying so we just went home

she thought when she was eating her lunch that she had a noodle stuck in her throat the "chokeing

thing" so now she is not eating to much(again)

I am told that this might happen between 9 and 12 or so months

she was sick when all of it started again but not that sick

she had a small sore throat and a slight fever but NOTHING like we have seen before

so has anyone elce have had this happen? in this time frame and then it just goes away?

I am hopeing It just goes away again...

I just dont get it

Tracie

[SarahJane]

I'm so sorry. No words of advice (our 1st IVIG is in Nov). You have my best wishes, most positive thoughts, & prayers! Virtual HUGS!

[dabel]

I am sooo sorry to hear this! I do want to chime in here though. My son had IVIG last December and he experienced a slow progression to better. He got an infection (suspected MRSA) in the spring and we saw the PANDAS stuff coming back. We added double strength bactrum to his 875 twice/day Augmentin and it seemed to stop the backslide in it's tracks. We had seen a couple of issues earlier due to exposure. To me this showed that My child's immune system still goes awry when it is challenged. When I asked Dr.K about this he told me that just so long as he responded to treatment he would not worry about it. My question to him was how do you treat a virus if he got one. Well sure enough after returning to school for the first time in two years My son got a little virus. Like you mentioned it was not a big deal at all. He missed one day of school because he was tired and sore. Sure enough a week later here we go downhill. My pediatrician put him on a 20 day steroid taper to keep the really bad stuff from taking hold and to buy us some time. I contacted Dr.K and he said that if a virus did this to my son then it was obvious that he needs another IVIG. I do not have the money upfront for the IVIG as we did not get any of our money back last time and no help to get it either but that is another story. I found a doctor here in SE Wisconsin that is good about getting IVIG covered and just got the call about a 1/2 hour ago that we are approved and good to go!!! So second IVIG here we come! So in short....yes we had the same thing happen here. Dr.K said if the child is going to relapse it is usually at 9 - 15 months post IVIG. It is so sad to see especially when you have finally witnessed your REAL child and how cool they are when healthy!

[Fixit]

I am sooo sorry to hear this! I do want to chime in here though. My son had IVIG last December and he experienced a slow progression to better. He got an infection (suspected MRSA) in the spring and we saw the PANDAS stuff coming back. We added double strength bactrum to his 875 twice/day Augmentin and it seemed to stop the backslide in it's tracks. We had seen a couple of issues earlier due to exposure. To me this showed that My child's immune system still goes awry when it is challenged. When I asked Dr.K about this he told me that just so long as he responded to treatment he would not worry about it. My question to him was how do you treat a virus if he got one. Well sure enough after returning to school for the first time in two years My son got a little virus. Like you mentioned it was not a big deal at all. He missed one day of school because he was tired and sore. Sure enough a week later here we go downhill. My pediatrician put him on a 20 day steroid taper to keep the really bad stuff from taking hold and to buy us some time. I contacted Dr.K and he said that if a virus did this to my son then it was obvious that he needs another IVIG. I do not have the money upfront for the IVIG as we did not get any of our money back last time and no help to get it either but that is another story. I found a doctor here in SE Wisconsin that is good about getting IVIG covered and just got the call about a 1/2 hour ago that we are approved and good to go!!! So second IVIG here we come! So in short....yes we had the same thing happen here. Dr.K said if the child is going to relapse it is usually at 9 - 15 months post IVIG. It is so sad to see especially when you have finally witnessed your REAL child and how cool they are when healthy!

 

so it hasn't been a year yet......

but if you made it,,,,to say 18 months..he thinks you are home free!?!?!?!?

that would be kinda exciting

[dabel]

I guess that is a good question. I wish we had made it to 18 months!! I have been told that it takes a full year for the brain to heal and all of the blips associated with this disorder to fade. I personally have not been told that once you make it x amount of time you are safe. I just don't think that any of the doctors truly know for sure but I would guess the longer you go the more you can relax. I was somewhat relaxed but still on alert.....he was doing so well!!! We are having our second IVIG about 11 months after the first.

Edited October 19, 2010 by dabel

[Doug]

Ya,we have a feeling that we are headed back for IVIG #2 with Dr.k

I think he just waiting to make sure,if she is doing ok by Monday I will try school again

and go from there,if not we will do the prednisone and see what happens.

We are so tired of this ride!

But she is more tired of it also.

Tracie&Doug