After the IVIG

[mtmom]

My son received his first IVIG ten days ago. We are seeing worsening of symptoms - he has become defiant, hyperactive, and aggressive. Some of these symptoms we have never been seen before. Is this typical from anyone's experience? We are very worried that the IVIG is not working.

 

Also, my other children and myself had some cold symptoms a few days after his IVIG. Then, he experienced a low grade fever two days after the IVIG. Should we be concerned that maybe he is having a flare.

 

For a few days afterwards his insomnia stopped. But it is showing its ugly head again.

 

Any advice or input will be helpful.

[hootie]

I don' have any experience with this...bumping it up so someone might see it and reply

Edited October 25, 2011 by hootie

[HT's Mom]

My son received his first IVIG ten days ago. We are seeing worsening of symptoms - he has become defiant, hyperactive, and aggressive. Some of these symptoms we have never been seen before. Is this typical from anyone's experience? We are very worried that the IVIG is not working.

 

Also, my other children and myself had some cold symptoms a few days after his IVIG. Then, he experienced a low grade fever two days after the IVIG. Should we be concerned that maybe he is having a flare.

 

For a few days afterwards his insomnia stopped. But it is showing its ugly head again.

 

Any advice or input will be helpful.

 

I think it is not uncommon to have a worsening of symptoms before things get better post IVIG. Ten days is not long enough to tell. Our doctor does not measure anything in terms of "did it work" until at least 3 months out. I would contact his PANDAS doctor about the cold and fever symptoms, but hang in there and be patient waiting for improvement.

[bronxmom2]

yes, a brief worsening of symptoms (especially after the first IVIG) is very common... happened to us but it evened out after about 2 weeks.

[Dedee]

My daughter has had 2 HD IVIG's. The first one we saw immediate improvement and then saw regression after about one month. We were already set to have the second one at six weeks. After the second IVIG she regressed immediately just as you described. For us it lasted about 3 to 4 weeks and then she started to recover. The recovery has been very gradual but there is definite improvement. It is so hard to wait those few weeks after the IVIG. I know you worry that it may have made things worse or that you won't see any improvement at all. Try to stay calm and be patient (I know it is hard). I believe you will see some improvement. If you aren't familiar with the herx reaction, then do a search on this board and follow some of the recommendations for that. Make sure to encourage plenty of water for up to one month following the IVIG. Waiting is very difficult. The 3 month mark seems to be where most physicians measure wheather it has been successful or not. Best of luck...

 

Dedee

[nicklemama]

Its common. Dr K calls it peeling back the layers. We saw lots of bumps in the road. DS developed a pretty intense shoulder shrugging tic after IVIG. It went away about 6 wks later. He is almost 6 months post IVIG and doing pretty well (knock on wood).

[mtmom]

Thank you so much for the response. It is very helpful and hopeful. The waiting is so upsetting. I can not control his behaviors anymore. He doesn't listen to me. I feel so helpless. school is a nightmare. He is so hyperactive and hurting teachers and screaming. I can not figure out if the screaming is a vocal tic or just part of the defiance. My boy was so compliant before...it is so unreal!

[nicklemama]

When he is healed, he will be compliant again. I can attest to it.

[kimballot]

We had severe worsening of symptoms that slowly resolved. If you do not see improvement, send me a PM and I can share our experiences. Hopefully yours is a mild-moderate "turning back of pages".

 

Our doctor hypothesized this is due to the "good" antibodies complexing with the "auto antibodies" in the brain. These complexes cannot be removed quickly by the body, so they deposit in tissue - including the brain, and we see an increase of symptoms until they are carried away. I don't know if this is exactly what happened (it was probably one of the pieces).... but this picture did help me cope.