Is the climate changing already?

[saidie10]

Today we got the best news! Not only did my DS7 finish his second day of IVIG (did not go as well as the first...pretty bad headache and vomiting), our Case Worker with the Hospital who has been working tirelessly to get an answer from BCBS of Texas about covering or denying the IVIG walked in at the 11th hour with our answer - approved! I absolutely knew that it would be denied based on what I have read on here and online about BCBS. I was shocked...elated... ecstatic! Our Doctor insisted on putting PANDAS as the cause of my son's illness, immune deficiency/disorder, etc. I told him I was pretty sure it would be denied if he did this, but he insisted that his ethics would only allow him to put the actual thing we were trying to get the treatment covered for. So, there it was, plain as day in his cover letter to Blue Cross...PANDAS. I have sat in fear for a month, knowing it would be denied because of this, but NO, we have an approval!!!!!

 

Along with studies, blood work, etc., this Case Manager also sent along the bulletin from November for United Healthcare stating that IVIG was specifically approved for PANDAS. I think this helped our cause!

 

Don't stop fighting the good fight you wonderful parents!!!! The tide is a changing

[Mary M]

That's some of the best news I've ever read. Thank you for sharing!

[kimballot]

Many smiles to you!! Thanks!!

[justinekno]

Great news! Where do you find this? We are still trying to get Aetna to approve our request.

 

 

 

this Case Manager also sent along the bulletin from November for United Healthcare stating that IVIG was specifically approved for PANDAS.

[melanie]

I have BCBS of NJ and they did cover for PANDAS in the hospital IVIG.They did say later on they shouldnt have.They do cover his IVIG treatments monthly now for ID.Glad to hear things are going well.

Melanie

[nevergiveup]

I hope ur son got some prednisone it helps with side effects of ivig. Ask doc if not. He got a very high dose so these side effects are expected, steroids help calm them. quote name='saidie10' date='19 August 2010 - 08:48 PM' timestamp='1282268906' post='80509']

Today we got the best news! Not only did my DS7 finish his second day of IVIG (did not go as well as the first...pretty bad headache and vomiting), our Case Worker with the Hospital who has been working tirelessly to get an answer from BCBS of Texas about covering or denying the IVIG walked in at the 11th hour with our answer - approved! I absolutely knew that it would be denied based on what I have read on here and online about BCBS. I was shocked...elated... ecstatic! Our Doctor insisted on putting PANDAS as the cause of my son's illness, immune deficiency/disorder, etc. I told him I was pretty sure it would be denied if he did this, but he insisted that his ethics would only allow him to put the actual thing we were trying to get the treatment covered for. So, there it was, plain as day in his cover letter to Blue Cross...PANDAS. I have sat in fear for a month, knowing it would be denied because of this, but NO, we have an approval!!!!!

 

Along with studies, blood work, etc., this Case Manager also sent along the bulletin from November for United Healthcare stating that IVIG was specifically approved for PANDAS. I think this helped our cause!

 

Don't stop fighting the good fight you wonderful parents!!!! The tide is a changing

[nevergiveup]

One other thing that may also be playing into this approval is the new health care reform for children going into effect now, I believe it is vaguely written but research protocol must also be insured for children if justified by doc. SO swedos study, plus, NIMH's new letter maybe good enough. And the fact that other health care companiesinsure this illness may have tied there hands.They sure don't want bad pr or a law suit with regards to treating children. Again the wording is vague in the reform bill, but one thing that is not vague is children will be insured now, and not denied care. I think we will see many more approvals in the future. Denying coverage to sick children is about to become a big very detrimental for them. name='saidie10' date='19 August 2010 - 08:48 PM' timestamp='1282268906' post='80509']

Today we got the best news! Not only did my DS7 finish his second day of IVIG (did not go as well as the first...pretty bad headache and vomiting), our Case Worker with the Hospital who has been working tirelessly to get an answer from BCBS of Texas about covering or denying the IVIG walked in at the 11th hour with our answer - approved! I absolutely knew that it would be denied based on what I have read on here and online about BCBS. I was shocked...elated... ecstatic! Our Doctor insisted on putting PANDAS as the cause of my son's illness, immune deficiency/disorder, etc. I told him I was pretty sure it would be denied if he did this, but he insisted that his ethics would only allow him to put the actual thing we were trying to get the treatment covered for. So, there it was, plain as day in his cover letter to Blue Cross...PANDAS. I have sat in fear for a month, knowing it would be denied because of this, but NO, we have an approval!!!!!

 

Along with studies, blood work, etc., this Case Manager also sent along the bulletin from November for United Healthcare stating that IVIG was specifically approved for PANDAS. I think this helped our cause!

 

Don't stop fighting the good fight you wonderful parents!!!! The tide is a changing

[Stephanie2]

That is awesome. Can you tell me where you got the "bulletin" from Noveember regarding UHC covering for PANDAS? We ahve BCBS - Federal, and I am in the process of trying ot get coverage as well. Do you think they will cover it for my 2yo who has no signs of ID?? Not even vaccine titers to help the cause...

[WornOutDad]

I would also love to get my hands on the United Health Care bulletin. Aetna just rejected our level II appeal, nice!

[philamom]

I would also love to get my hands on the United Health Care bulletin. Aetna just rejected our level II appeal, nice!

 

We haven't received coverage for my daughter's first IVIG 14 months ago...we're still appealing Aetna. We are now getting infusions covered by them under an immune deficiency diagnosis.

[momaine]

Congrats! My dd13 (110 lbs now) has had IVIG two times without any negative side effects. We give her 400mg motrin and 50mg Benedryl just before IVIG, then six hours later, then again six hours later. Repeat on day two of IVIG. Also, the nurse gives her an IV bag of fluids at the same time which helps too and she drinks as much as she can stand. And at noon each day she got 40mg of prednisone just the one time. For my dd this has kept all side effects at bay.

 

(edited this because I made it sound like she got the prednisone every 6 hours and she did NOT, just once per day)

Edited August 21, 2010 by momaine