Update: 30 days post IVIG

[momtocole1]

I feel so bad that I have not been on the forum. I have been going through some type post traumatic stress stuff I think! My family and friends have been very concerned that there is something really wrong with me. I really am fine though, just pulling in and really focusing on my son's healing process.

 

It has been 30 days since the IVIG.

 

We have definately seen the "sawtooth" recovery pattern.

 

I will start with the not so good, so I can end with the really good:

 

Old OCD behaviors are cycling back in. They go out as fast as they come in. The hard part is that my son, really has trouble understanding this, so he gets scared. He does not know what is going to hit him next.

 

His days and nights are completely mixed up. He cannont go to sleep at night. I have tried everything:

 

Advil PM, Ativan, Advil, Tryptophan, Cacium/Magnesium. You name it, we have tried it.

 

He just gets very revved up at night and the OCD gets pretty bad. The last couple of nights have been a little bit better though.

 

I don't want to wake him up in the morning because he is so exhausted and his brain is healing so I just let him sleep really late. Then we are back to square one again, but even on days when I force him to wake up early, he still can't settle down at night. Some have mentioned something about micro siezures of the brain or something like this. If anyone has any information or advice on that I would really appreciate it.

 

Now the GOOD.

 

So many OCD behaviors have gone away. I am slowly taking down all of the papers that had to cover the ovens and microwave so that he could not see his reflection in the glass.

 

He can now be anywhere in the house at night and the shades/blinds can be up. It does not matter if he can see his reflection.

 

He will leave his bedroom door open, and the light on and his Xbox on. This NEVER happened before. (It may sound so trivial, but it is huge for him.) Before IVIG he had many rituals involving turning EVERYTHING Off before leaving a room including unplugging things.

 

When he starts to have a hard time about something that he wants me to do to "help" his OCD, I can now talk or joke him through it. This was literally impossible prior to IVIG. Before, if I did not "help" him he would unravel sometimes to the point of slapping himself in the head continuously. He has only hit his head once since the IVIG.

 

He went outside yesterday and rode his razor in the pouring rain. That has never happened before. Also, he has not gone outside to ride his razor in many, many months.

 

He took a shower yesterday on his own. Usually, I would have to stay in his room while he would take a shower. Also he took a shower while there were other people in the house other than our family members. That has also NEVER happened.

 

I really have to better about documenting more specifics so that I can track it all. His rages are way down also, he will go for days without raging.

 

All I can say is Thank God for IVIG...

[bmom]

Hang in there. I remember the post IVIG time. I was very nervous. It was high anxiety time for me-soo many hopes!

[KeithandElizabeth]

Wow:

 

What great news!!!!!

 

Thanks for sharing!!!!

 

Elizabeth