Who is having IVIG with Dr. B on Aug 18th & 19th

[momaine]

We went for a recheck with Dr. B on Thursday and Louise said that my dd would be havinig her second IVIG with two other girls who had it together before and who had exchanged email addresses. I would love to share those email addresses with my dd13 who will be there the next time. I think it would be nice for them to be able to get to know something about each other before hand.

 

Dd made a lot of progress after the first ivig. Still have one catagory of issues hanging on and we're hoping the next ivig will hasten her recovery.

 

Angela

[Fixit]

so you are not back sliding...you are just trying to get thelast little bit gone!?!?!

 

how many weeks since last(or your first)ivig

 

 

thanks

[momaine]

so you are not back sliding...you are just trying to get thelast little bit gone!?!?!

 

how many weeks since last(or your first)ivig

 

 

thanks

Not really back sliding but there is one groups of repeating symptoms that has been more stubborn than her other symptoms (which were actually worse). Dr. B thought that one more treatment would only benefit her more.

Angela

[momaine]

so you are not back sliding...you are just trying to get thelast little bit gone!?!?!

 

how many weeks since last(or your first)ivig

 

 

thanks

 

Oh, and it's been 5 weeks since her first IVIG so they will be 8 weeks apart. The one thing that makes it difficult to know whether some of her issues are better or worse, is that she seems better with other people around even though internally she still struggles and we've had company almost constantly since her IVIG. Dd plans her life to stay as busy as possible because its so much easier for her. So, it's hard for me to tell, but the other day, the day of her apt. with Dr. B, Dd13 said that day was her BEST day so far.

 

Today she is alone. (just our family home) She's struggling to walk without the repeating shuffling (and other repeating issues that make her avoid doing things....like reading or using a calculator)And she just asked me to LOOK at her, which was one of her worst symptoms before IVIG. Now her asking comes DAYS apart....she only asked once today, and that used to happen all day long. Sometimes she couldn't swallow her saliva without me looking to make sure she did it "normally." She would grunt to get me to look at her so she could swallow, because she couldn't talk with a mouth full of saliva. Sometimes I'd have to run from another room because it was too hard for her to get up and come to me.

 

So all of the reassurance questions and needing me to look at her are pretty much 90+% gone.

 

But her difficulty repeating things got worse after IVIG and then slowly improved....with some sawtoothed action...little worse, little better...hard to tell if she has stalled out or if the change is now so slow that I can't see it. But it is still a little worse than it was pre-ivig while on a long steroid taper. But at the same time, she is not getting Advil anymore, no more prednisone, and no more Augmentin. (still on Zith)

 

Before IVIG, if we changed even one thing (advil, prednisone, or lower antibiotics) she would begin to fail immediately and HUGELY. Instead of shuffle walking, she'd get STUCK and not be able to move at all. She'd spend an hour trying to get into the house and through the door, all the while crying and raging against this aweful force that told her she didn't do it right and needed to do it again. It was horrible. She'd sit on the tar after awhile and cry and say she just couldn't do it. It would be ten o'clock at night and she wanted nothing more than to be safely in her bed but there she would sit on the tar, crying and angry and wanting to die.

 

Sometimes I can put out of my head how horrible it was. But then the memories come flooding back when I type this out and I really realize just how hugely she has changed since the IVIG. Dr. B felt another one might help with the rest of the symptoms and I certianly agree that if we can make her even better, WHY THE ###### NOT? The poor kid has suffered long enough. We should have done it sooner, but God works in mysterious ways and if we had not ended up at Dr. B's we probably would not have found that she was immune deficient to strep and we likely would have had to remortgage the house to pay for IVIG. (as it is, we are already extremely broke from dealing with this disorder) So, our insurance will pay for the treatment and it helped her immensely. I'm hoping that another round will bring even more relief and permanant change.

 

Angela

[pandasmom]

Hi - my daughter is having IVIG on the 18th and 19th. Louise is working her magic again and scheduled our daughters together since she knows they do so much better with other kids around for distraction.

Please email me at fluteflurry@yahoo.com and we can talk more and our daughters can exchange email addresses. Thanks for posting!

[Fixit]

Momaine...thank you for taking the time to fill in the details...

I AM SO HAPPY YOUR DD IS DOING BETTER...AND MAY THE ROADS RISE TO MEET YOU ON THE REST OF THE JOURNEY!!!

[momaine]

Momaine...thank you for taking the time to fill in the details...

I AM SO HAPPY YOUR DD IS DOING BETTER...AND MAY THE ROADS RISE TO MEET YOU ON THE REST OF THE JOURNEY!!!

Thanks! Am wondering today if she really is backsliding....its so hard to put it into perspective sometimes. Wish her friends weren't so busy these last few days. <sigh>

Angela