36 days post IVIG, good things and bad...

[momtocole1]

My son had IVIG 36 days ago. There are so many wonderful things that are happening, but so many troubing things too.

 

I remember some people posting about difficulties about a month after IVIG. Can those of you that so a big dip around 30 days please share your experiences.

 

The good things that are happening is that my son is reaching out to friends. He does not have too many any more, but he wants to reach out to the ones that he still has.

 

He is feeling so much of the OCD going away that it is like he doesn't know how to live without it because it has consumed his life for so long.

 

He is longing for a connection with others which is such a great sign.

 

He is still struggling quite a bit with slepp.

 

The OCD seems to be getting more intense right now, he is crying out a lot, but the main difference is that he is able to tolerate me working through some of the OCD with him now. Whereas before that was completly impossible.

 

Does that make sense?

 

Please share your thoughts...

 

Thanks...

[peglem]

He is feeling so much of the OCD going away that it is like he doesn't know how to live without it because it has consumed his life for so long.

 

This is what I'm anticipating...at this point, everything has turned OCD...I'm not sure my daughter has the neurological connections to just enjoy something for the simple pleasure it brings. We've not done IVIG yet, (soon)...I keep trying to picture how things will change. Its been so long- so much a part of who she is, I just don't know who she'll be w/o OCD.

[thereishope]

If you're trying to work through the OCD, that's good, but I would say don't tackle too much at once, but do be consistent in what you choose to do. Realistically, you can't tackle every compulsion and obsession at the same time.

[Megs_Mom]

If you're trying to work through the OCD, that's good, but I would say don't tackle too much at once, but do be consistent in what you choose to do. Realistically, you can't tackle every compulsion and obsession at the same time.

 

That is good advice. Also, we spent a LOT of our time focused on what "we want to do" as opposed to "what we don't want to do" (OCD related things). OCD "work" was only 30-45 minutes of a day - and then a lot of time spent exploring the positives that we could have if we were not fighting OCD all the time. We also did homework listing things that she wanted to do - we'd work on that everyday, and then try everyday to do something - at least a simple one - on the list. If OCD is a huge part of your life, then learning to live again can be challenging. What will you do with all that time that is now available! They may need to be taught how to live "normally" again, especially if they gave up a lot of passions over a few years. Joining a club at school or trying a low level sport, simply going to libraries, concerts, eating a new food, watching a fun or scary movie, going to the park, getting a dog (yep, I am that mom!!!) - all of those kinds of things can be helpful when treatment is working to give them something new to focus on.

 

Congratulations on finding a treatment that is helping your child shed OCD - life really does get better!

[faith]

Hi Judy,

So glad to see some things are getting better and that you're feeling more hopeful. great about him wanting to see his friends. Is the crying a depression thing, or is he upset about the ocd? sorry, I didn't quite understand, do you mean he's stopped some obsessions, but the ones that remain are more intense? or are they new? I know you've said in the past that the ocd therapy didn't really seem to help him, but maybe now he might be in a better place to work thru it? could you get him into the therapy again instead of trying to work on it yourself?

 

blessings for continued healing,

Faith

[memom]

Hi Judy,

 

I don't have answers as much as I am able to relate with some of your words. I think out kids are close in age. My dd17 has mentioned her fears of life after OCD. She has mentioned how comforting it is to have everything dictated for her through her OCD (well, not everything). It is almost like an addiction. She has spent a lot of time protecting it. In the moment, it calms her anxiety, it dictates who she can like, what she wears, what she say's, you name it.

 

What she is less able to see is all she's lost because of it. We are still trying to find our own way. In some ways, I feel like I'm the only one who it working towards her healing (and she sabotages both herself and me all the time).

 

Some of the other suggestions are great. Good luck and keep us posted. Are there plans for another IVIG?

 

Ellie