Our experience with IVIG - positive so far

[airial95]

I thought I'd share our story briefly, I know in the past there have been several posts about the "turning back of pages" after IVIG, and things getting worse before they get better kind of thing. Quite frankly, they scared the bejeezus out of me! We were reluctant to try IVIG, partly because our son was so young, and partly because I felt until we got a handle on WHY he was getting strep so often (every 6-8 weeks), IVIG may be premature.

 

Well, about 4 weeks ago we went up to CT to have our first IVIG with Dr. B. He was 2 at the time of dx, and is 5 now - so we thought the time was finally right. And the results have been nothing short of a miracle. We have not seen any "turn back the pages" or anything like that. In fact, with the exception of about 12 hours of headaches and vomiting (which happened through the night, so he slept through most of it off and on) - it has been a wonderful experience for us.

 

The highlights - since IVIG our son has:

 

- gained 3 lbs and is eating regularly (and then some!) with little/no anxiety about his food

- is joining us at the dinner table at meal times and eating with us; even engaging in and initiating dinnertime conversations

- is joining and asking to play family games instead of playing video games

- is playing video games less than 2 hours a day (down from every waking moment!) and is asking others to play with him, and not getting upset if they beat him

- brushing his teeth and showering on his own

- more talkative and interactive when people are talking to him

- has gone outside to play with friends of his own free will

- has asked if his friends can come over to play

- is reading books of his own free will

 

 

The best by far, however, was the other day, when he curled up next to me, gave me big hugs and kisses and said "Mommy, I have a secret, I really DO love you and Daddy. I know sometimes I get angry and say that I hate you guys, but it's not true. Harvey makes me say that (his OCD). I really DO love you guys just as much as Millie (our dog)."

 

We still have some ritualistic OCD around medicine time, and he's not getting dressed completely on his own yet, and we still have some trepidation about socks and shoes (although, since IVIG he has told me that the reason is he just doesn't like the socks I buy, can we get new ones. An improvement from the screaming fits and having to put them on and off multiple times before its "right") - but overall, we are about 95%+ better. And I couldn't be happier!!!

 

Thought I would share our positive experience for others who are considering or going for IVIG soon.

[beeskneesmommy]

I am so happy for you! ABX took our son far, but IVig much further. It will me 8 months in mid May and he looks better every day. He still has occasional minor flares, so we plan to do another IVig in mid May to pump him up before tapering down the ABX. It has been a long journey, but we are in good shape!

Edited May 3, 2013 by Beeskneesmommy

[Tamistwins]

Such great news to hear, I am so happy for you!

[philamom]

ditto