I DON't Know What To Do

[Tamistwins]

Our dd12 had high dose IVIg (1.5mg/kg) over 2 days in mid-June. We can empathize with your worries, fears and basic condition of household function or dysfunction as is the case for those of us living with PANDAS. Our dd's sleeping and eating issues were the only symptoms that had near instantaneous improvement post IVIg. All other symptoms increased after the IVIg and we did not see improvement until after week 5. From that point through now she has had steady and continuous improvement across the board. We have had a few "dips" (all associated with someone in the house having a cold) but the depths have not been as deep as during exacerbations of the past. Yesterday was challenging but she had not taken her 500mg abx. Is your child still taking a prophylactic dose of abx? The daily 500mg dose of abx for our dd is the glue that holds her together. As she moves past the 24 hr mark she gets progressively more symptomatic until she takes the abx. Please know we are all here for you...yes, this life is hard, on all of us...our PANDAS child, our other children, our spouse/partner, ourselves...

Hi Mary,

Thank you so much...I am so glad to hear that your daughter is that dd? improved after week 5, I was starting to think there will be no improvement for us. We are still on abx, we were on zithromax then we switched to augmentin 400 mg chewable, I thought would make life easier but then my daughters head tic and eye blinking returned so they are back on 200mg zithromax 1 tsp 2x a day. I wonder if this isn't enough?

[nevergiveup]

Not allergist immunologist, IMMUNOLOGIST only, why are you paying out of pocket if you have an immune def? That is not ok, not ok!!! Do you have insurance? You can enroll your child into a self insurance plan with a preexisting condition and it cannot refuse to pay. (Health care Reform Act). Most health insurance cover ivig for immune def's. It is a lot of money to pay for ongoing ivig. I would keep investigating this option.

[Tamistwins]

Not allergist immunologist, IMMUNOLOGIST only, why are you paying out of pocket if you have an immune def? That is not ok, not ok!!! Do you have insurance? You can enroll your child into a self insurance plan with a preexisting condition and it cannot refuse to pay. (Health care Reform Act). Most health insurance cover ivig for immune def's. It is a lot of money to pay for ongoing ivig. I would keep investigating this option.

We have bc/bs of nj. and this is what they say:

Your plan only provides coverage fcr services deemed by us to be medically necessary and appropriate. lf you elect to receive these services, we will not provide benefits or reimbursement for them.

This determination is based on the following: Examples of conditions for which use of lVlG is considered investigational due to lack of supporting clinical evidence published in the medical literature. Horizon Medical Policy describes the circumstances in which the requested service(s) are deemed medically necessary and appropriate.

Horizon UMP 016 lntravenous lmmunoglobulin (lVlG) Therapy States:

lV. Examples of conditions for which use of lVlG is considered investigational due to lack of supporting clinical evidence published in the medical literature include, but are not limited to, the following:

H, MISCELLANEOUS: 16. PANDAS (pediatric autoimmune neuropsychiatric disorders associated with streptococcalinfections).

 

I have a patient advocate who is trying to fight this but who knows how long can go on for.

[EAMom]

HI Tamistwins,

 

What dose of IVIG did your child get? And dose of Antibiotics?

 

I suspect if there is infection in the household (siblings sick with strep or otherwise, or even carriers), that could account for lack of improvement.

 

Re insurance, there are threads on insurance codes. You don't necessarily want to put "PANDAS" down (hey, remember, PANDAS doesn't exist anyway ). If there is an immune def., you should put that down, and get IVIG coverage that way. And there are other codes...here is a thread http://www.latitudes.org/forums/index.php?showtopic=6027

 

You might also want to pm kmom http://www.latitudes.org/forums/index.php?showtopic=10355&pid=87256&start=&st=#entry87256 who just got approved for IVIG re what codes they used.

Edited October 6, 2010 by EAMom

[Tamistwins]

HI Tamistwins,

 

What dose of IVIG did your child get? And dose of Antibiotics?

 

I suspect if there is infection in the household (siblings sick with strep or otherwise, or even carriers), that could account for lack of improvement.

 

Re insurance, there are threads on insurance codes. You don't necessarily want to put "PANDAS" down (hey, remember, PANDAS doesn't exist anyway ). If there is an immune def., you should put that down, and get IVIG coverage that way. And there are other codes...here is a thread http://www.latitudes.org/forums/index.php?showtopic=6027

 

You might also want to pm kmom http://www.latitudes.org/forums/index.php?showtopic=10355&pid=87256&start=&st=#entry87256 who just got approved for IVIG re what codes they used.

Hi EAmom both my children got the high dose we see Dr. B. and we all had blood tests and eight now all 3 kids are on antibiotic. my 15 month old came back with a cam kinase score of 130. Does anyone know does this mean pandas?

[EAMom]

HI Tamistwins,

 

What dose of IVIG did your child get? And dose of Antibiotics?

 

I suspect if there is infection in the household (siblings sick with strep or otherwise, or even carriers), that could account for lack of improvement.

 

Re insurance, there are threads on insurance codes. You don't necessarily want to put "PANDAS" down (hey, remember, PANDAS doesn't exist anyway ). If there is an immune def., you should put that down, and get IVIG coverage that way. And there are other codes...here is a thread http://www.latitudes.org/forums/index.php?showtopic=6027

 

You might also want to pm kmom http://www.latitudes.org/forums/index.php?showtopic=10355&pid=87256&start=&st=#entry87256 who just got approved for IVIG re what codes they used.

Hi EAmom both my children got the high dose we see Dr. B. and we all had blood tests and eight now all 3 kids are on antibiotic. my 15 month old came back with a cam kinase score of 130. Does anyone know does this mean pandas?

 

 

I think that would be considered "low pandas" range. Our "non-pandas" now 7-year old also came back at 130. We're watching her. She's overall good. Some mild anxiety, sensory stuff. Nothing full-blown like out other dd. We did do a trial of 1 mo. of azith. and that helped things a bit. We're sort of watching and waiting on her...