Yeah ! getting IVIG on Mon and Tues.

[thomasmom]

It has been long several weeks with my son's ramping up the tics to an unbearable level. At times he tics so hard that he can barely walk. I have an incredibly wonderful local Ped who has called so many people to get their input. Of course she has talked to Dr. K at length but also Dr. L and Dr. Grant who works with Dr. Swedo at the NIH. She is writing for Thomas to get the NIH IVIG protocol (2 gm/kg over 2 days) in our local hospital ! Interesting comment from Dr. Grant. He said that now PANDAS is an "on label use" for IVIG and is not experimental. So BCBS should pay for it, right ? We have had good results with our 2 previous IVIG's each lasting about 6 months. Now if we can just make it through the "turning back the pages" period then we should be fine ! (I hope....just like all PANDAS Moms, I can't celebrate too much, always worrying about what's around the corner) At least I am happy tonight

[melanie]

Hi We to have BCBS and PANDAS is not covered as a primary dx .We get IVIG and it is covered under imm def and cronic condition is PANDAS .Be careful with how they send it into the insurance.

 

Im very happy your getting the treatment Great Pediatrician .Mine stinks he cant do anything except prescribe advil(LOL)

 

Melanie

[tpotter]

I agree to be careful how it's written up, BUT, if it's true that it's no longer "experimental", and the NIH will support that position, then BCBS does not have a leg to stand on (they are denying us because it's "experimental", but my boys also have an ID, and they are refusing to accept that, and banking everything on the PANDAS they saw listed in his paperwork (we're fighting.) That being said, it's the "experimental" part that they can no longer fight, and it sounds like there are some great pediatricians out there.

 

I just had a battle with mine the other day. He's been supportive on some things, but just won't coordinate with Dr. L, and Dr. B, and it's caused for some very hairy moments with one of those docs. He says that he's not comfortable treating PANDAS (even though I've given him tons of literature, he knows who to talk to, etc.) and I should leave it to the specialists. Unfortunately, the specialists are at least 2 1/2 hours away, and every time my kids get sick (like right now), I can't go driving to one of the specialists to play around with their abx. So, at the moment, but children probably have a really bad case of strep (at least my younger son), and I'm fighting stupid battles again (with all the time I have..hah hah!)

 

My pediatrician thinks that the way to treat their PANDAS/immune deficiency/post-infectious encephalopthy is.

 

"1. Intensive PT 2 x per week.

2. See a Psychologist weekly with experience in chronic illness especially

chronic pain.

3. Resubmit all requests to insurance using the Rheumatic Fever diagnosis.

I know this is a different approach from yours, and please don't take

offense as I know these are sensitive issues for you. I am not discounting

PANDAS, I am just telling you what has worked in my medical experience."

 

 

Oddly, though, you have to have a diagnosis of "ARF"...you can't just make it up, and as I pointed out to him after getting this email from him yesterday, this is what I was trying to do about 1 year ago, when he gave me the referral for the rheumatologist. He also thinks that PT is going to help my son when he suddenly gets severe low tone from the encephalitis (currently one of his hands is completely flat...last year both hands were completely flat, and it hurts for him to pick things up and write!

 

So, if PANDAS is no longer experimental, and we can get that in writing from Paul Grant or someone else high up at the NIMH, that could solve all our problems!

 

Great work and sleuthing ThomasMom, and thank your pediatrician for us.

 

BTW...do you by any chance live near Philly (I'm north of philly, near trenton). I need a pediatrician who is totally on board like this. (I am going to tell ours what yours did, though I don't think it will make any difference at all.)

[thomasmom]

No I live in a small town in Eastern North Carolina which makes it even more amazing that I found such a proactive caring ped. I did email her the codes that (I think) Dr. K used when BC covered our IVIG twice before. I hope that works ! I just googled Dr. Swedo and Dr. Grant and found lots of information about him. SOunds like a great guy !

[Fixit]

At least I am happy tonight

 

i find it hard to truly reval in the moment i should be enjoying...i can't take the rollercoaster..so i stay in constant "yah that's great...when is the shoe dropping"

i am so glad for you getting this info and for your happiness...you bring a smile to my face...

[amyjoy]

OK so i am contacting our insurance advocate who filed with anthem blue cross of california for ivig for my ds and we were denied, appeal verbally denied, referred to ccs and then also denied by them, but we did not use those diagnostic codes. we will refile on monday and i will let you know what happens. we are currently having to fund raise for a treatment, and i'm so so angry. we have raised around $2000 so far, and because my son is 14 and 6ft1, plus has tics and needs the 2gm/kg dose, we are at $12,436 wholesale cost ($72/gm)for one stinking dose of gamunex. because i wear the dual hat of pandas mom and provider, as we treat PANDAS with ivig in my office, i can order it literally wholesale and not have even a single infusion cost and still be totally overwhelmed with over $12,000 per dose. i am soooooo angry right now i can just scream!!!!!!! in fact last night i was so angry about it i slammed my oven door (while making of course gluten free bread for my ds who also has celiac) and slammed it so hard i broke the hinge. I hate being caught in this corporate game while my ds suffers day in and day out. ugggggh!

[tpotter]

I so agree with everything you're saying, and now just imagine that I have 2 boys 14 and 17, and also 6+ feet tall (plus I can't pay wholesale.) My kids are diagnosed with ID (through Dr. B.), and we can't even get them to pay, because it was coded as something else first (encephalopathy NOS,) and i suspect that they think we're messing around.

 

If you didn't do it already, get a copy of the minutes of any verbal appeals that you have had with insurance, and also get the copy of the recording that they made (I just asked for it.) Our minutes were heavily edited (that's actually an understatement,) to the point that they don't even make any sense. The recording had some VERY interesting information on it that they didn't know existed. I saw a lawyer yesterday about it, and he said we have a VERY good case (particularly because of the tape.) That being said, it could take an extended period of time to get the payment, but if you're going to pay for it out of pocket anyway, I would see if there's anything you can do to possibly get it paid for in the end.

 

I just emailed my pediatrician, and asked him to get in touch with Dr. Grant to see what the deal is. I'm also going to call Dr. B's office on Monday, and have them check into it, because if it is truly the case that IVIG has now been accepted as apprpriate care by the NIH (perhaps the study is done, and they are just waiting to get it published?) this could also help all of our cases.

 

Unfortunately for us, we are stuck waiting for my kids to get treatment, while we fight, because I don't have $30K (it's $15K per child), and they are getting sicker by the minute. I am SOOOO furious with insurance.

 

I'm also going to send all this information to the state insurance commissioner.

 

The lawyer we saw yesterday said that BCBS is one of the worst.

[amyjoy]

I so agree with everything you're saying, and now just imagine that I have 2 boys 14 and 17, and also 6+ feet tall (plus I can't pay wholesale.)

 

 

We give IVIG to every family for wholesale, as we all have the right to access that and i am 100% committed to that, and so is our office. We just buy it and pass the cost right through, as it should be.

 

Also just fyi, we charge a total of $3500 for the entire two days of infusions, premeds, supplies, nursing care, everything, for the the ivig infusion. that is a commitment i have, again - as a mom and a provider - it can be done for this, i'm tired of the rip off and all the $ being made off of our sick children. Ah, But, you are on the east coast, i am on the west.

 

I applaud your advocacy and am there!! Once my son is treated, i am taking this to the absolute highest possible level, congress even. Oh, this is too big of a conversation for this blog!!! i do love this blog.