Question post IVIG...DS is sleeping a lot.

[saidie10]

Just wondering from others who have experienced IVIG. My DS is still having some headaches (we are two days post second day of IVIG) and is sleeping right now during the middle of the day which is SO NOT LIKE HIM. Is this normal?

 

Thanks for the advice!

[sptcmom]

Absolutely normal as per Dr K. Infact its one of the things to look for and that will last for a while he said. Its blissful sleep thats been missing since the onset of PANDAS he said. We experienced that as well.A few hours longer is fine as long as its just normal sleep and not lethargy etc.

Still waiting for the nighttime seperation anxiety to go away though.

[saidie10]

Thanks for the reply...I feel so much better reading that it is normal! I will say his sleeping has been much better the last few nights. He has slept until 730 every morning when he is usually up by 6am! I am also trying not to read too much into it, but the last two nights he has gone to the bathroom one time and got in bed. He usually gets in bed and gets up 5-7 times or more to "potty" again. Maybe it is the placebo effect that Dr. Infante talked about (I hope not) but I have not said anything to him about it. He just gets in bed and goes to sleep. I am floored. It has been well over 6 months or so since he did not get up to go potty again and again, and again at night once he got in bed. Another moment of joy was when I was holding him yesterday in in my lap and he was sitting *still*...he does not sit still. He is constantly moving something on his body, whether it be his fingers or his toes!

 

Sorry you are still experiencing the nighttime separation anxiety. I hope that improves soon. Are you seeing improvements in other areas?

[sptcmom]

I'm happy you're seeing improvements

We are 13 weeks post IVIG with Dr K and DS is 90%. We have OCD anytime, tics only when tired, left leg limping, very low ferritin. On full strength abx.