Getting really nervous about IVIG

[lmkmip67]

I am not OCD, but I can't help but get very nervous about the difficult times I hear some people talking about after IVIG. I don't expect it to just fix everything over night. It seems so many struggle after for a few weeks. I am often exhausted daily with all the defiance and arguing. I am not honestly sure how I will handle it if it gets worse, even for a few weeks after IVIG. We go in two weeks for our first one. My son is 7. I realize that most are on here because they are still dealing with it. But I need to hear some good news, some positive stories. Are the after effects really that bad? My husband is more nervous about it than I am. I know it is obviously the next step. But it still makes me nervous. I worry about something else happening as a result of IVIG that we can't fix. I may not really understand how IVIG works, or maybe I am just really distrusting, not sure. I hear it is safe. But it still makes me really nervous. Can anyone reassure me that this is the right thing to do?

[SSS]

I can't tell you it's the right thing to do, but I can tell you I was also an absolute wreck going into our first IVIG.

I'm sure you've read all the things about hydration, ibuprofen after IVIG, ect. I think all these things are important to help stave off after-effects.

We had a whammy high dose our first one, and we did have the migraine, but it was manageable-

My dd was in rages before IVIG, they did continue for a few weeks after our first IVIG- but then it did settle in, and things gradually did improve. Not cured, but some viable improvement, and I didn't even give it enough time, really, to see more from the 1st one. We did a 2nd because she was re-exposed to strep (for a week.)

I am keeping her home now for the next 10-12 weeks post our last and 2nd IVIG we just did.

Yes, some of my family thinks I'm wonky, or over-reacting, but I don't care. I want this to have the best chance of being able to settle without igniting her immune system all over again so soon after.

I was very scared, too. I think that is normal. But I don't regret it for a minute.

What was also surprising to me was how easy the actual procedure is- it only took us about 5 hours a day.

ETA: I also think part of our 'problem' after the 1st IVIG was my dd's gut issues- she has gut issues, and before our 1st IVIG they were not good, due to the steroid burst and switching up antibiotics so much, and I think that has an effect. We got that back to good order, and it made a difference for us. But many kids don't have the 'gut' issues we do.

Edited April 15, 2011 by S & S

[Doug]

What Dr is doing it?

we went to dr.k

[lmkmip67]

We are going to Dr. B.

[butterflymom]

=

Edited October 9, 2015 by tampicc

[kimballot]

You probably read the story I just posted about my 14 year old son and the difficult time we have had since his first IVIG 8 weeks ago. It might help you to know that if I had it all to do over again the only thing I would do differently is have the numbers for crisis services and the police at hand before there was a problem. I would not change anything else.

 

My son needed IVIG. If he could have had it 7 years ago when he was in an extreme exacerbation we might not be where we are now. I start every meeting with professionals saying "I wish we could have done this 7 years ago - before we were dealing with 14 years of autoimmune brain dysfunction coupled with puberty hormones and a child who is as big as me".

 

We have not seen anything in this exacerbation that we have not seen before during regular PANDAS exacerbations - the only difference is that he is larger now and more difficult to control. We have gotten through this before and we will get through it again. I am grateful that we are doing this before he starts High School. I hope and pray he can get some sustained relief from this and focus on life.

 

Best wishes to you and your family as you navigate your PANDAS road.

[lmkmip67]

Thanks everyone! Kim, I did read your story, but it wasn't the what made me nervous. I really hope this is helpful for your son!! I guess we just wonder if what we are doing is best for our child. Hearing some hopeful stories is very helpful. Thanks again!