I really need some help

[melanie]

My insurance company has turned us down again.They are saying the 1st IVIG was a mistake and shouldnt have been covered.The neuro has done a peer to peer and tried to speak to them this is the same md that got it covered the 1st time They say in their letter that this is investagatioal and not approved.But they did it once and the md wants to do it again.I am willing to pay for it out of pocket the only problem is my md wants him in the hospital!!He was there for 3 days last time thats going to raiise the price significantly.How can i convience the insurance to go through with this.I am a teacher and have good insurance so I thought,I am going to go to my union and get a lawyer if need be but meanwhile things arent good here Hes not on any antibiotics.I am waiting for his pdychiatrist to call me maybe I need to go up on his risperadal until I can figure this out .I cried 1/2 the day he came home and told me hes sick of this tourettes and he cant help when he gets angry. He hit a eacher and embarassed himself.I truly am so desperate The md is going to tell me how much it will cost to so this.I have to try right?Im tired and I feel hopeless .I know how great it was for 2 weeks The md said hes upping the iv 1/3 so hes not ok with doing it at an infusion center.Who can help?

 

Melanie

[nevergiveup]

Melanie, Do you know how much your insurance paid the first time? Try to negotiate with the hospital over your cost, it should never be more than 65 percent of the billed amount. Also go to your HR or benefits representative get them to tell the insurance company that this is not ok. They listen when they think that they may loose a very big account. Also try a health ins advocate. See if you can have the procedure done ASAP and work out a monthly pmt plan with the hospital. Then fight all avenues with insurance. Since they paid it once and your doc saw improvement you have a great case to question their rational for denying it this time. I know how frustrating this is it is unquestionably horrible when our medical system pays for unnecessary surgery and procedures but won't pay for a serious illness. I just went through something similiar and I know its hard to get through the day when it feels like no one really cares to help unless its easy. I am praying for you and your son. What dosage is he receiving that he needs to be hospitalized? I don't get that part does he have low IGA and may have a deathly reaction? How did he tolerate the first infusions? I know they give very large infusions for all kinds of autoimmune things and they are usually done at home. First infusions at site after tolerence is established at home. Seems like neuro are scarced of IVIG , immun docs don't think nothin of it. I think maybe your doc is practicing defensive medicine and is just overly cautious.

 

My insurance company has turned us down again.They are saying the 1st IVIG was a mistake and shouldnt have been covered.The neuro has done a peer to peer and tried to speak to them this is the same md that got it covered the 1st time They say in their letter that this is investagatioal and not approved.But they did it once and the md wants to do it again.I am willing to pay for it out of pocket the only problem is my md wants him in the hospital!!He was there for 3 days last time thats going to raiise the price significantly.How can i convience the insurance to go through with this.I am a teacher and have good insurance so I thought,I am going to go to my union and get a lawyer if need be but meanwhile things arent good here Hes not on any antibiotics.I am waiting for his pdychiatrist to call me maybe I need to go up on his risperadal until I can figure this out .I cried 1/2 the day he came home and told me hes sick of this tourettes and he cant help when he gets angry. He hit a eacher and embarassed himself.I truly am so desperate The md is going to tell me how much it will cost to so this.I have to try right?Im tired and I feel hopeless .I know how great it was for 2 weeks The md said hes upping the iv 1/3 so hes not ok with doing it at an infusion center.Who can help?

 

Melanie

[thereishope]

Is there a way to get the insurance to cover the hospital stay at least? Is the hospital in your county? Would you be able to file for financial assitance through the hospital? You usually can only get assistance if you're in the same same county as the hospital.

[sf_mom]

Melanie... I would add that your son HAS to be on an antibiotic to keep him from future exposures or else the IVIG will be useless. Have you thought about going to see someone that has experience with PANDAS like Dr. L or Dr. K.

 

Its possible that you would see tremendous improvement on a high dose of antibiotics and steroids without IVIG. Perhaps consider that option before proceeding with another expensive 3 day hospital stay (its about $10,000 a day where we live)... so potentially $30,000. Even Dr. K with travel would be MUCH, MUCH more affordable.

 

-Wendy

[melanie]

Is there a way to get the insurance to cover the hospital stay at least? Is the hospital in your county? Would you be able to file for financial assitance through the hospital? You usually can only get assistance if you're in the same same county as the hospital.

 

 

It is in my county I doubt Ill be able to get assistance why is this happining I dont know if the md will lie to the insurance hes head of neurology

[FallingApart]

Do you have access to a neuropsychologist? This person can provide cognitive testing both before and after IVIG/PEX. You/neuropsych can then take this and show it to your insurance company to show why the IVIG was necc. If your son is in a horrible state, you can fill out the test yourself rather than him. I filed it out for my daughter. I feel like we finally have a case for the insurance comapny that shows DD is one way without IVIG/PEX and another way with it. I think these tests are very key. Perhaps there is another profession that can provide them to you as well, this is just the route we used.

 

We did IVIG in hospital 2 times. The cost was approx $15k each time. That was 2 night stay.

[melanie]

Melanie, Do you know how much your insurance paid the first time? Try to negotiate with the hospital over your cost, it should never be more than 65 percent of the billed amount. Also go to your HR or benefits representative get them to tell the insurance company that this is not ok. They listen when they think that they may loose a very big account. Also try a health ins advocate. See if you can have the procedure done ASAP and work out a monthly pmt plan with the hospital. Then fight all avenues with insurance. Since they paid it once and your doc saw improvement you have a great case to question their rational for denying it this time. I know how frustrating this is it is unquestionably horrible when our medical system pays for unnecessary surgery and procedures but won't pay for a serious illness. I just went through something similiar and I know its hard to get through the day when it feels like no one really cares to help unless its easy. I am praying for you and your son. What dosage is he receiving that he needs to be hospitalized? I don't get that part does he have low IGA and may have a deathly reaction? How did he tolerate the first infusions? I know they give very large infusions for all kinds of autoimmune things and they are usually done at home. First infusions at site after tolerence is established at home. Seems like neuro are scarced of IVIG , immun docs don't think nothin of it. I think maybe your doc is practicing defensive medicine and is just overly cautious.

 

My insurance company has turned us down again.They are saying the 1st IVIG was a mistake and shouldnt have been covered.The neuro has done a peer to peer and tried to speak to them this is the same md that got it covered the 1st time They say in their letter that this is investagatioal and not approved.But they did it once and the md wants to do it again.I am willing to pay for it out of pocket the only problem is my md wants him in the hospital!!He was there for 3 days last time thats going to raiise the price significantly.How can i convience the insurance to go through with this.I am a teacher and have good insurance so I thought,I am going to go to my union and get a lawyer if need be but meanwhile things arent good here Hes not on any antibiotics.I am waiting for his pdychiatrist to call me maybe I need to go up on his risperadal until I can figure this out .I cried 1/2 the day he came home and told me hes sick of this tourettes and he cant help when he gets angry. He hit a eacher and embarassed himself.I truly am so desperate The md is going to tell me how much it will cost to so this.I have to try right?Im tired and I feel hopeless .I know how great it was for 2 weeks The md said hes upping the iv 1/3 so hes not ok with doing it at an infusion center.Who can help?

 

Melanie

 

I know the ivig was like 3,000 or thats what the insurance comp covered.I dont know about the hospital I never got anything on that.He had a slight headache when we got home we gave him some advil and he was fine nothing after that ,

Im a teacher and Im going to go to the union rep tomorrow but Im afraid to wait to long.Im so scared I am going to up his medication to .75 mg of risperdal I sooo dont want to do it but I dont think we have a choice now until we can get this done I wish sometimes that someone else would just help me do it for me om just tired of this Hes tired of this he doesnt deserve this .Why why why???

[melanie]

Do you have access to a neuropsychologist? This person can provide cognitive testing both before and after IVIG/PEX. You/neuropsych can then take this and show it to your insurance company to show why the IVIG was necc. If your son is in a horrible state, you can fill out the test yourself rather than him. I filed it out for my daughter. I feel like we finally have a case for the insurance comapny that shows DD is one way without IVIG/PEX and another way with it. I think these tests are very key. Perhaps there is another profession that can provide them to you as well, this is just the route we used.

 

We did IVIG in hospital 2 times. The cost was approx $15k each time. That was 2 night stay.

how old is your DD

[FallingApart]

she turned 4 last week

[melanie]

she turned 4 last week

 

thanks I emailed dr.Swedo does she answer people back?

[nevergiveup]

Yes she always did in the past

[EAMom]

Melanie...I strongly agree with SFMom's comments!!! You son must be on antibiotics (preferably full-strength Azith.). That plus (later) steroids, may give you significant improvement even without more IVIG. Moreover, if you don't keep your son on antibiotics post-IVIG, future IVIG's may be rendered useless. Start the abs ASAP, it might not be too late.

 

My dd (54 pounds) has been on 250mg/day Azith. since June 08. If your son is bigger/older he should be getting 500mg/day, at least initially (for a couple of months minimum).

 

Melanie... I would add that your son HAS to be on an antibiotic to keep him from future exposures or else the IVIG will be useless. Have you thought about going to see someone that has experience with PANDAS like Dr. L or Dr. K.

 

Its possible that you would see tremendous improvement on a high dose of antibiotics and steroids without IVIG. Perhaps consider that option before proceeding with another expensive 3 day hospital stay (its about $10,000 a day where we live)... so potentially $30,000. Even Dr. K with travel would be MUCH, MUCH more affordable.

 

-Wendy

[melanie]

Melanie...I strongly agree with SFMom's comments!!! You son must be on antibiotics (preferably full-strength Azith.). That plus (later) steroids, may give you significant improvement even without more IVIG. Moreover, if you don't keep your son on antibiotics post-IVIG, future IVIG's may be rendered useless. Start the abs ASAP, it might not be too late.

 

My dd (54 pounds) has been on 250mg/day Azith. since June 08. If your son is bigger/older he should be getting 500mg/day, at least initially (for a couple of months minimum).

 

Melanie... I would add that your son HAS to be on an antibiotic to keep him from future exposures or else the IVIG will be useless. Have you thought about going to see someone that has experience with PANDAS like Dr. L or Dr. K.

 

Its possible that you would see tremendous improvement on a high dose of antibiotics and steroids without IVIG. Perhaps consider that option before proceeding with another expensive 3 day hospital stay (its about $10,000 a day where we live)... so potentially $30,000. Even Dr. K with travel would be MUCH, MUCH more affordable.

 

-Wendy

 

This dr doesnt want him on anyibiotics I have fought with him but,,Im going to give this q1 more try then I have to move on I want him to do the IVIG again It worked I want to get him dx with somekindof autoimune issue what can I do to get this?I have seen every md but no luck This is extremly aggravating,heatbreaking and I cant take much more of this!!!I am also going to call Dr K again and set up something I hate my insurance company,I have to increase my sons medication Im very angry about that to lets just treat the symptoms not the cause

 

Melanie

[Worried_Dad]

Ditto! Melanie, I can totally relate to the doc frustrations... took us more than a year to find a doc in our area who would even consider helping our son. And IVIG works great for some, but it's expensive, harder on the child, and carries some risks.

 

For our son (13, older like your son), the "Saving Sammy" mega-dose of augmentin has triggered much more dramatic progress than 2 full-dose rounds of IVIG (with Dr. K) 28 days apart. I really believe that these 2 rounds of IVIG were only marginally effective for him because he still had strep harboring inside him, which almost immediately started the whole autoimmune attack on his brain all over again.

 

So - for us - I'd say that IVIG is pretty useless by itself until the underlying strep infection is eradicated (or at least controlled in conjunction with IVIG). If you can get a doc to prescribe it, the high-dose abx are simpler, cheaper, and at least worth a shot.

 

Best of luck!

 

 

Melanie...I strongly agree with SFMom's comments!!! You son must be on antibiotics (preferably full-strength Azith.). That plus (later) steroids, may give you significant improvement even without more IVIG. Moreover, if you don't keep your son on antibiotics post-IVIG, future IVIG's may be rendered useless. Start the abs ASAP, it might not be too late.

 

My dd (54 pounds) has been on 250mg/day Azith. since June 08. If your son is bigger/older he should be getting 500mg/day, at least initially (for a couple of months minimum).

 

Melanie... I would add that your son HAS to be on an antibiotic to keep him from future exposures or else the IVIG will be useless. Have you thought about going to see someone that has experience with PANDAS like Dr. L or Dr. K.

 

Its possible that you would see tremendous improvement on a high dose of antibiotics and steroids without IVIG. Perhaps consider that option before proceeding with another expensive 3 day hospital stay (its about $10,000 a day where we live)... so potentially $30,000. Even Dr. K with travel would be MUCH, MUCH more affordable.

 

-Wendy

[EAMom]

If your doc declines abs again insist that they consult with Dr. Latimer (who is also a neurologist), to tell them abs are needed. That is just ridiculous that they will give you risperdal but not Azith. Honestly, they are risking your son's life with this approach. Risperdal is far more dangerous than Azith. Not to mention, the problems of uncontrolled PANDAS.

 

Another option (since you live in NJ) is to just make an appointment with Dr. Latimer.