Parents who have done PEX

[dcmom]

We are having insurance issues.... My dd is having pex now, and our insurance has denied it. It is being reviewed by a third party. They look to see if there are other insurance co that pay for this. Those who have had pex, if you don't mind pming me the name of your insurance- I would love to give them a nice list.

 

Btw we have UHC, and I hate them, now.

[LNN]

Sent you an email. Let me know if you didn't get it. You guys are in my thoughts and prayers!

Laura

[sf_mom]

I just wanted to wish you all the best with your daughter procedure and pray you see immediate and lasting improvements.

 

Please update when you have time.

[forjpj]

We just had pex last week at Georgetown, after a battle with the insurance company. It is BC/BC Federal Anthem, and because we were seeking services above a certain geographical marker, Carefirst of Maryland was overseeing it. We were on our third review. I'm not sure what happened at the end. I think some pediatrician came in at the end, reviewed it, and basically revoked the doctor who denied it the week before. I had written this long letter to the insurance company detailing all his daily activities of living and how he couldn't do them. Apparently, the denying doc ignored the letter or is extremely cold-hearted because I didn't sugarcoat the situation at all, and basically, told them they could pay for the pex, multiple stays in psyche institutions, or attend his funeral. I finally had a number that would get me close to a voice mail for the denying doc and left a voice mail. They don't make it easy to contact anyone. I told him I wanted to make sure he received the letter, and, literally, used the term "life-threatening" in every sentence. I said my son was refusing to eat, and was danger to himself and others. My last statement was something like...'just wanted to make sure you understand the situation is life-threatening and as long as your willing to accept responsibility for that." Pretty much, laid it all in their laps!! Within the hour, somebody called and said it was approved. I don't really think it was the voicemail, but it felt good. Also, interesting was about an hour after that the denying docs office called me to say that he had denied it last Friday. Pretty funny, huh? Guess they don't talk much between offices? I happily informed the lady that I had been told an hour ago that it had been approved. She was surprised!! That is why I think a pediatrician came in and reviewed it again and reversed the original docs decision. Part of the problem is there is no actual ICD9 insurance code for PANDAS. Looks like if the disease at least had it's own insurance code number it would a step in the right direction of getting companies to recognize it. I don't how to get it a code, a petition from all of us stressed out parents maybe? Anyway so we got it, and now we are waiting for results... But you can tell your insurance Carefirst approved it. And, Good Luck!!

[fuelforall]

And how did PEX do for your child?

[forjpj]

And how did PEX do for your child?

 

 

Some subtle changes/improvements since coming home Fri. He is eating and walking more on his own, washing his hands less, and actually playing with toys again. In fact, just now, for the first time in over a month...he walked out of a room, I got into something, and 10 minutes later had to stop, and figure out where he was. Good bye Separation Anxiety!!! (maybe? )

[bronxmom2]

dcmom, we have United Health Care Oxford and they have covered everything.

[mom md]

WE have BCBS NC and they have covered it. Interesting though, our total bill for PEX was around $40,000 and BCBS paid a few thousand and Georgetown wrote off the rest. Once the insurance pays the hospital has to accept there fee and can't bill the patient the difference. Just shows even if they cover it they do not reimburse hospitals appropriately. I

[FallingApart]

We have Premera and they covered it.

 

When is your other daughter scheduled to go? We are thinking of you and wishing you luck!!!

[thereishope]

UHC does have different plans and different things are covered under each plan. So...that may be a reason why it's covered for one person and not the other.

 

I hate UHC too, but for different reasons.

 

Could it be the diagnostic code they used? Is the hospital you are going to in your network to begin with?

[dcmom]

We are in the hospital now. We ended up going self pay ( which sucks), but we are still appealing with the insurance company. Apparently they look at whether other companies cover procedure as part of the appeal. I am providing some of this info as a courtesy

 

 

 

 

 

 

 

 

 

UHC does have different plans and different things are covered under each plan. So...that may be a reason why it's covered for one person and not the other.

 

I hate UHC too, but for different reasons.

 

Could it be the diagnostic code they used? Is the hospital you are going to in your network to begin with?

[Kayanne]

I am wishing all the best for your daughter!!!

[Lotafaith]

sorry very, very new to this, what is PEX?

 

Lotafaith

[thereishope]

I am so happy Buster did a fact page and a faq page!

 

 

From Buster's FAQ page... Further explanation follows on the page.

 

http://www.latitudes.org/forums/index.php?showtopic=6266

 

PEX technically stands for Plasma Exchange. It is sometimes used interchangeably (especially on this forum) with plasmapheresis. Plasmapheresis is a process of removing antibodies from the blood stream through filtration. In Plasma Exchange (PEX), another donor's plasma is added on the return so that new antibodies are added (similar to IVIG). Plasmapheresis is used in severe auto-immune diseases because it can address acute antibody levels.

sorry very, very new to this, what is PEX?

 

Lotafaith

[dcmom]

Hi everyone! Thank you for your help! Luckily, the insurance company has overturned the denial of BOTH of my daughter's pex treatments!

 

We are home from the hospital. It was a stressful week- but not as bad as the few weeks prior when dd was doing really badly. She is relieved to be home, and we are trying to be patient in our expectations for results.

 

I will keep the forum updated.