Update

[Phasmid]

My ds12 had low dose IVIG last January 6. It made a big difference and knocked out residual OCD that he had (which we didn't even know was OCD because it has been an issue for so many years and was fairly mild). My son's illnesses are sinus infections, so doc thinks chronic strep infection there. He has been on azithromycin since last May. I just took him off, and he is okay, but some really subtle behavior changes that I can't be sure is related. His immunologist who treated him with IVIG moved. We were left with a denial by Anthem for further treatment. The first infusion WAS covered. We got one letter of appeal from the doc in our old doc's practice, but I didn't send it to Anthem. I was told to wait until the ped. neurologist had a chance to look at him.

 

Saw ped. neurologist. I gave the neurologist a five page history, very succinct, and to the point (yes, still five pages!). In that history was every date for every illness, dates for ER visits, names of physicians, and dr's notes from office visits. The neurologist entered the room shaking her head and looking like she would cry any minute. The first thing out of her mouth was, "Poor child, how could they have missed this." She is ordering some bloodwork and wants and MRI, but went right into how she would do everything in her power to push my son's infusions through insurance red tape. She wrote a very lengthy letter of support, sent it to our former immunologist, as well as to our new pediatrician, whom she knows well.

 

That pediatrician (and we have only met with him once for sinus infection) called me yesterday and told me he was 'floored" at my son's history, and the failure of everyone before (before Dr. McGhee at UCLA) to do something for this child. And he knows very little about PANDAS and hasn't treated one! He told me he would fully support continuing treatment, especially in light of his great response to the first low dose infusion, and offered to take over treatment (he does infusions regularly in the local hospital) Today, he called and told me that he spoke to our former immunologist, got the dosing protocol, and wants to do a high dose treatment. He told me that he jumped in and read everything he could about PANDAS and couldn't believe what he was reading about how kids suffer with this. Then, he went off on insurance companies. But he stated that, with four letters of support, two from noted immunologists, this would get pushed through one way or another. He also said that if it DOES have to go to the insurance commissioner, that "the commissioner would laugh at any denial" based on my son's history and the appeal letters.

 

So, I finally feel like if I suddenly died tomorrow, my son will be okay.

[peglem]

Oh, I'm so happy for you guys! What fantastic news! And God bless these doctors who have the human decency to help our kids!

[Phasmid]

AMEN! There are some caring physicians out there. It'll spread, just a little more time.

[butterflymom]

=

Edited February 3, 2016 by butterflymom

[norcalmom]

WOW - that is GREAT! Congratulations!

 

And thanks for breaking in Dr McGhee, and sending his info our way!!

[norcalmom]

PS - please let us know what you find low dose vs high dose!

[kimballot]

My ds12 had low dose IVIG last January 6. It made a big difference and knocked out residual OCD that he had (which we didn't even know was OCD because it has been an issue for so many years and was fairly mild). My son's illnesses are sinus infections, so doc thinks chronic strep infection there. He has been on azithromycin since last May. I just took him off, and he is okay, but some really subtle behavior changes that I can't be sure is related. His immunologist who treated him with IVIG moved. We were left with a denial by Anthem for further treatment. The first infusion WAS covered. We got one letter of appeal from the doc in our old doc's practice, but I didn't send it to Anthem. I was told to wait until the ped. neurologist had a chance to look at him.

 

Saw ped. neurologist. I gave the neurologist a five page history, very succinct, and to the point (yes, still five pages!). In that history was every date for every illness, dates for ER visits, names of physicians, and dr's notes from office visits. The neurologist entered the room shaking her head and looking like she would cry any minute. The first thing out of her mouth was, "Poor child, how could they have missed this." She is ordering some bloodwork and wants and MRI, but went right into how she would do everything in her power to push my son's infusions through insurance red tape. She wrote a very lengthy letter of support, sent it to our former immunologist, as well as to our new pediatrician, whom she knows well.

 

That pediatrician (and we have only met with him once for sinus infection) called me yesterday and told me he was 'floored" at my son's history, and the failure of everyone before (before Dr. McGhee at UCLA) to do something for this child. And he knows very little about PANDAS and hasn't treated one! He told me he would fully support continuing treatment, especially in light of his great response to the first low dose infusion, and offered to take over treatment (he does infusions regularly in the local hospital) Today, he called and told me that he spoke to our former immunologist, got the dosing protocol, and wants to do a high dose treatment. He told me that he jumped in and read everything he could about PANDAS and couldn't believe what he was reading about how kids suffer with this. Then, he went off on insurance companies. But he stated that, with four letters of support, two from noted immunologists, this would get pushed through one way or another. He also said that if it DOES have to go to the insurance commissioner, that "the commissioner would laugh at any denial" based on my son's history and the appeal letters.

 

So, I finally feel like if I suddenly died tomorrow, my son will be okay.

 

I feel like ALL of our prayers have been answered! I have been pulling for you and I am SO SO happy for you! Plus... I am equally happy for all the PANDAS kids that will now be recognized by these doctors thanks to your efforts!

[Phasmid]

Yes, this will be interesting, but a little scary. After the low dose, his re-reading worsened and became a stutter (got stuck on letters vs. re-reading sentences or words) but this didn't last long, then all of it went away. So, the low dose worked. Also worked on the really bad body image stuff. He still spends lots of time examining his arms for fat, and looking in the mirror at his stomach. But this may be nothing to worry about as he is eating fine now. However, he never asks me anymore- that incessant reassurance questioning stopped probably two weeks after infusion.

 

So, doing one high dose infusion scares me- I don't want it bringing stuff back. But, he still may be pulling his eyebrows at night. That is what we are left with, and maybe a little mood stuff.

 

 

[momaine]

This made me cry with joy for you. Everything makes me cry, but I am so happy for you. It will get better. It just takes time. Hang in there. Keep searching and reading.