PEX coverage & alternatives

[dasu]

Our kids have been in a long flare that is eating up their lives and ours. We did an IVIG which gave some respite until another strep infection/ exposure. (They showed no signs). We see Dr L who has recommended PEX but UHC had denied coverage - their documentation states it is unproven. Has anyone had UHC approve PEX? I saw some threads from 5 years+ back but nothing recent.

 

If we do not get that approved is there any other recommendations that may have similar benefit to PEX? We have already paid for 3x IVIG out of pocket and PEX runs about 26,000 per kid.

 

We are at our wits end. The kids are crazy and scared and out of control. They are driving us crazy and we are stressed out beyond belief. We hardly get out of the house, spend our time managing kids, feeding them (thanks seroquel), cleaning up after them and repairing the destruction they are creating. How can insurance do this?

Edited February 11, 2016 by dasu

[LNN]

Cigna covered DS's Pex in '08 but they've since changed their stance and no longer cover it. It didn't give us lasting improvements because DS also had Lyme. I see in your signature you've done Igenex testing. Not sure what else you've looked at in terms of triggers. But as a rule of thumb, it seems that if you've done the logical interventions and the kids aren't responding the way you'd expect, there might be a puzzle piece you're missing.

 

Staph is giving my DD a slew of problems and we can't seem to get rid of it. Mold has also given us problems. I totally sympathize with being at wit's end. And I wish I had ideas for you. But all I can say is based on my own experience, I wouldn't pay $26K out of pocket unless you were confident there wasn't an active infection or trigger that would unravel any benefits before you'd even finished paying the bills.

[Mom23boys]

Cigna actually does cover PEX for syndenham's chorea that is severe under their current policy. I ditto the alternate infections route. What have you tested for? Viruses? Mycoplasma? I see some viruses have been tested. Can you test for others? Would Dr. L do a trial of acyclovir (very benign in the scheme of past and proposed treatments)? I would leave no stone unturned in the active infection camp before I did PEX.

 

Having said that, when denied, appeal. With failure of 3 IVIGs you have a strong case that they have failed other treatment. You can look up other health care provider's positions on IVIG by typing in IVIG policy "X insurance company". Be sure you have the most current one. Could you get a SC diagnosis based on symptoms or is that too far out there (we have tics and chorea)?

 

As a last resort, there are people that do health insurance appeals. You may want to go it on your own but as much at stake as you appear to have (2 children, right?) it may be worth paying for some advice on the best way to attack this.

[demeter]

I cannot reply to the PEX part of this post. However, i can totally relate to being at your wits end!!! We were the same way with our son! We tried multiple medical interventions, including years of antibiotics (targeting mycoplasm, strep, Lyme, babesia, and bartonella) steroids, T&A, anti-virals, methylation, diet changes, 12 HD IVIG's and I'm probably forgetting some:(. When we really, really were at our "wits end", we decided to go to Roger's Behavioral Health in Tampa. I cannot be grateful enough! This really was a life changer for our son and our family!!!! And the six weeks were covered by Aetna. I would never have imagined we could be where we are as a family, really back to our normal baseline before this Pans s$#t hit. He just told me today he barely notices any OCD, and we as a family don't notice any! Our son's Pans behaviors were severe OCD, major separation anxiety, and fear, he did not have any tics. Anyhow, I have been posting about our son recently,(more details about our experience in an earlier post) as he finished the program mid January. I really hope families consider CBT/ERP from a credible clinic. I feel it gets missed as a proven therapy in the Pans world, no doctor ever mentioned this as an option, and I only recalled a few parents on this forum talk about it which is why we decided to go. Anyhow, you can continue with medical interventions at the same time as doing CBT/ ERP. Please feel free to contact me. Also, my son has talked to other kids about the program, so if your kids are interested he is willing. Our son is 11 and we have been dragging him to doctors since this started when he was 6. He truly feels happy, healthy and empowered! I can't even begin to put into words how elated his sister, my husband and I are:). Regardless, of your path I am hoping for a turn around for your family! It is amazing what what you have done and are doing for your kids!!!

[dasu]

Thanks all for the words and encouragement. We have found it difficult to think clearly in the midst of the chaos. There was a point I felt that we as parents were handling this well, but I think that time has worn us down and we aren't nearly as patient and hopeful. I know the kids see that. The ODD in particular has eaten us up.

 

We have tested for viruses, mycoplasma etc. Mycoplasma did come up slightly over the limit in my daughter. We tried acyclovir last year after the kids got coxsackie after their IVIG; it did not seem to change. Is there a test for staph?

 

@llm We did not do mold tests but it looks like we are finally moving out of our house in April. Living for short periods outside the house have not changed symptoms.

 

powpow sent a list of tests to do but to date Dr L did not want to do them and our primary doc also did not want to do that. Really...why are docs so resistant to ordering tests?! We were able to get an appointment with a pediatric endocrinologist and are on the hunt for a more open-minded doc.

 

One item that really pops out for me is that my kids cousins on my side have all had PANDAS symptoms (although neither my generation or my parents do). One sister has a son age 24 with autism, another son age 22 who had all the marks of P and is now living at home depressed unable to do school or work, a third who had some P issues but is OK now excelling in college. My other sister has one P kid age 12 who has had OCD, anxiety, but is managing with meds and counseling; she has a second daughter who is doing well. So this seems to imply some genetic root, with an environmental trigger(s). The question is what that trigger is.

 

I think your suggestion for counseling makes sense. As the flare has grinded on they have drifted further from normal life.

Edited February 12, 2016 by dasu

[dcmom]

I am so sorry for what you are going through.

 

I have two pandas daughters. I agree with the genetic predisposition. Most of the (limited) literature on pandas alludes to a genetic predisposition. Strep (and other illnesses) trigger pandas in some with this predisposition. What is seems to trigger, however, is an autoimmune disorder, which can subsequently be triggered by many things, some you will not find. Strep is thought to trigger other autoimmune disorders, so this makes sense. The same autoimmune disorder varies from patient to patient, think MS or lupus. Some may die of those disorders, some have long periods of remission. Doctors don't really have a great handle on triggers, or treating, for many of them. This is what I see in my girls. They were originally triggered by strep- but since can be triggered by an upper respiratory infection, or not, or can be triggered by something that we cannot figure out. They can have long periods of remission- 2 years, or short. For my kiddos, unlike some others, they do not get sick more frequently or have a hard time getting over illness- that part is normal. Anyway- this is what we see in my two girls- which seems to line up with Swedo's vision of pandas.

 

Both of my girls have had pheresis twice. All four times, UHC has denied our request for a pre approval. All four times we have pre paid to the hospital. All four times, we submitted the claims anyway, and all four times UHC has then paid. It sucks. It is not easy to come up with the $$. One time we borrowed from my dad, one time we withdrew from 401k, and other times we were lucky to have the money. We have spent so much money over the years on this disorder. Frustrating. We had miraculous results 3 of the 4 times they had pheresis. The most recent time, my younger had pheresis in early December, and we are seeing improvement, but much s-l-o-w-e-r. Unfortunately, pheresis is not a cure. It can be a cure for that episode- but there will/ may be another.

 

I agree with demeter. We have done therapy at USF in FL (managed by same doc as the Rogers program there) and at times that has been the answer. But I do think if they are in the "crazy" out of control place, medical treatment may be needed be4 therapy. I can kinda see with my kids- what they might need. If they are somewhat stable, but ocd and odd- therapy may help. It will also be a lot cheaper (UHC covers both programs- and even if it doesn't fix them, because they need medical treatment, it can take them from where they are to a better place. So financially it might make sense to give that a go before medical intervention-

 

The last thing I will suggest are psych meds. We resisted for a long time. Now both of my daughters are on prozac. It was a miracle for my younger daughter who could never seem to get back to baseline even in between flare ups. Brought her back to baseline in 2 weeks. The prozac of course does not prevent pandas flares, but for my girls it has really helped stabilize their mood through pandas episodes. They are both in flare ups now, but their mood is fine, they are really only combatting ocd, which while that can be debilitating, we can still enjoy family life. We are currently trying to raise the dose to see if it helps the ocd, so far no.

 

Good luck. I commiserate that having two pandas kids makes this nearly impossible. Logistically and emotionally. So many times what might be best for one, doesn't work for the other, etc. Plus financially, paying for two is of course twice as hard.

[demeter]

Dasu, I pm'd you this weekend