Music to My Ears

[saidie10]

DS is having IVIG with a San Antonio area Immunologist next week. We saw his referred Pedi Neurologist today and after an hour of visiting my DH asked him "if he were your son, what would you do?" and he said "IVIG". Boy was that such a relief to hear...we have been very anxious about this upcoming week and the reassurance was music to our ears. As a reminder, this is the first IVIG on a PANDAS case for this Immunologist who has been doing IVIG's for 25 years. We are nervous but hope it will bring some much needed attention to PANDAS in this area and provide more PANDAS friendly doctors for those of us in Texas to see. The Neurologist said that he believes PANDAS to be a subset of SC. I don't care what he believes it is a subset of or not, just that he believes it is real!!! I think this Immunologist who knows Swedo and respects Cunningham's work is really interested in my son as a case study for him. I trust him fully and am fine with that, as long as my son improves and gets the best care, if he wants to talk about my son with others doctors, that is fine with us! If it raises awareness of PANDAS and treatment options that can work that will be wonderful for other families!

 

We are still waiting to hear whether insurance will approve it. He has one heck of a Case Manager on it though. She is a piece of dynamite this one and has already threatened to contact the State Insurance Board if they don't approve. The diagnostic code used was Autoimmune Disorder Not Otherwise Specified. His office visit was covered under that so I have to believe they are going to cover it. The doctor wrote a wonderful cover let requesting predetermination of benefits and included case studies, etc. We are nervous and holding our breath until the phone call. They quoted about $10,200 for the IVIG. Yikes, but we will do it regardless. His health is worth everything to us!

 

Last thing is a question for you guys. Because this PANDAS thing is new to this Immunologist, he still doesn't understand the need for abx post IVIG. How do I convince him of the importance of this? He won't talk to Dr. K since we have only had a phone consult with him and he has not physically seen him. Does Cunningham feel this is important or not? He has said he greatly respects her as a scientist. Do any of you guys have any advice on this?

Edited August 13, 2010 by saidie10

[Worried_Dad]

You might want to re-emphasize to this immunologist that Dr. Cunningham has repeatedly referred to PANDAS as "rheumatic fever of the brain"... and nobody in the medical community argues with the necessity for RF patients to remain on antibiotics well into their 20's to avoid re-infection.

 

Here's a somewhat relevant post with an e-mail response related to RF that SF Mom received from Dr. Cunningham.

 

http://www.latitudes.org/forums/index.php?showtopic=5685

 

Hope that helps. For our son, 1st IVIG generated huge improvement... but it all spiraled downhill again with another infection. After 3 rounds of full-dose IVIG, our son didn't sustain his progress until we added the "Saving Sammy" dose of augmentin XR.

 

Good luck!

[tpotter]

It really shouldn't matter whether you have seen a doc or not, if your immunologist is asking for advice about protocol. He should definitely speak with one of the PANDAS docs...Dr. K., Dr. L., or maybe he would be more in tune with Dr. B., since he is also an immunologist.

 

BTW, I'll pray for you that you get the IVIG approved. Keep in mind, that some of us (my son, included) had difficulty with the NOS code. If there's a problem, did your immunologist do any other testing, such as IgG deficiency, IgA deficiency, etc? Then you have a specific diagnosis, rather than NOS. Also, since he's also seeing a ped. neurologist, is the doc comfortable with giving him an Encephalitis code (not Encephalopathy)?

 

We are in the process of cleaning up a problem with using the wrong diagnostic code (it was an NOS code), and I suspect that's why my son was denied for IVIG as "experimental." We fought it, and I did call the State Insurance Board. They were extremely sympathetic, but couldn't get past the experimental part. But, again, your insurance may look past all of that, and/or your doc has really good research to include. If you have problems, PM me, and I might be able to give you some advice.

 

I'm praying for you.