Worried, angry and upset

[1tiredmama]

I am so worried about getting the PEX that ds desperately needs. This child is 17 and has missed most of 3 years of high school because he is exhausted ALL the time and anxious. Not to mention that he has just about every symptom of PANDAS! He'd been suffering for years, and he's lost so many cognitive skills that we will have to take legal guardianship when he turns 18! He used to be incredibly intelligent!

 

Cigna PPO has denied PEX for the third time! I am beside myself! We told our ds that there is a treatment that will likely stop his tics, clear his foggy mind, and restore his energy, and now we may have to tell him that it won't happen, that we can't afford to help him! I wish we'd never told him. I'm so sad, and worried, and angry.

 

The only thing I can tell myself is that maybe it was too late for him, anyway. So many years of this condition have ravaged his brain and stolen his life. I doubt anything could bring him back.

 

Thanks for letting me cry on my computer.

[DeterminedMomVA]

I'm so sorry. Insurance companies are so clueless. Keep fighting and get an advocate if you can. IVIG is less expensive if you can't get them to approve PEX,...but I know Cigna generally won't pay for that either. Any idea if your ds has any immune deficiencies? Dr. B can sometimes get ivig approved through that route, although I know dr l recommended PEX for your ds. Keep fighting for your son.

[Missmom]

My heart breaks for you.... I know it is expensive, but is there no way to raise some of the money to help him. Perhaps, community or church fundraising events. It may take longer to get the money but at least it would give your son that hope. Forget fighting with the insurance companies anymore, use your time and energy to find a way to get him help. I know it must seem hopeless to you now, but stay strong, you can do this.

[LNN]

I'm not understanding why Cigna is denying Pex. Here's they're coverage guidelines for 2011-2012 http://www.cigna.com/assets/docs/health-care-professionals/coverage_positions/mm_0153_coveragepositioncriteria_plasmapheresis.pdf and on Page 2 it says it covers Pex for Pandas specifically. This policy has been in place for years. They covered my son's Pex in '09. Don't ask me how it was coded - I didn't get involved. It was handled thru Dr L's office.

 

That said, I too had very high hopes for Pex. It did help. I have no regrets. But in our case, it wasn't lasting and we eventually found other ways to address issues. It took a few years, but my son is a zillion times better - not out of the woods but a far cry from the bad old days. A completely different kid.

 

So try not to despair. If your son was once bright and functional, you can get him that way again. I in no way believe in the permanent damage theory. Sure, there can be habits that have to be unlearned, new pathways that must be forged in the brain. If you hit your thumb a dozen times, I'm sure it may always be tender and prone to repeat injury. But I don't think that means it becomes non-functional. There are other options still at your disposal and I don't think it's the end of your road, even tho I'm sure it feels that way right now.

[tpotter]

My heart breaks for you.... I know it is expensive, but is there no way to raise some of the money to help him. Perhaps, community or church fundraising events. It may take longer to get the money but at least it would give your son that hope. Forget fighting with the insurance companies anymore, use your time and energy to find a way to get him help. I know it must seem hopeless to you now, but stay strong, you can do this.

 

 

Also, G-town may be able to set up a payment plan with you. Some families have found that after paying out of pocket for IVIG or PEX, the insurance company ended up reimbursing them. See if Gtown will set up a payment plan with you, and then keep fighting insurance. It's not too late. DS (now 19) wasn't diagnosed until 15, and didn't get PEX until 16, then started getting IVIG at 17, and made massive improvments. We are also treating with supplements, and was treating for lyme, but c-diff has made it difficult to continue the traditional method.

 

But, it's not too late. Good luck

[cobbiemommy]

Get an advocate. PM me and I will send you the name of a company that really fights for you with the insurance company. They saved us a lot of money when BCBS got stubborn. Know anybody in the media? Contact them with your story and try to shame the insurance company. They already said no, so you have to get them to change their mind.

 

Cobbie

[PowPow]

I'm not understanding why Cigna is denying Pex. Here's they're coverage guidelines for 2011-2012 http://www.cigna.com/assets/docs/health-care-professionals/coverage_positions/mm_0153_coveragepositioncriteria_plasmapheresis.pdf and on Page 2 it says it covers Pex for Pandas specifically. This policy has been in place for years. They covered my son's Pex in '09. Don't ask me how it was coded - I didn't get involved. It was handled thru Dr L's office.

 

That said, I too had very high hopes for Pex. It did help. I have no regrets. But in our case, it wasn't lasting and we eventually found other ways to address issues. It took a few years, but my son is a zillion times better - not out of the woods but a far cry from the bad old days. A completely different kid.

 

So try not to despair. If your son was once bright and functional, you can get him that way again. I in no way believe in the permanent damage theory. Sure, there can be habits that have to be unlearned, new pathways that must be forged in the brain. If you hit your thumb a dozen times, I'm sure it may always be tender and prone to repeat injury. But I don't think that means it becomes non-functional. There are other options still at your disposal and I don't think it's the end of your road, even tho I'm sure it feels that way right now.

 

DITTO on this-- Cigna paid for pex (orginally on an otpt basis but then it got "fixed" a total of 3 times for my kids. this was in 2011.

I know it makes it worse for you to read that.

However, I will also say it was not a cure.

My child who had been sick for a short period of time (a year and severe for a month), was helped very quickly by pex, but still needed IVIG, ABX, time and intensive therapy. We are now 20 months post pex and she is doing well.

The sicker, longer since onset (3 years) and older (14) child- it helped, but took a month and did not help for long. By 3 months later, pex was repeated. It took IV steroids, IVIG, TIME TIME TIME and very intensive therapy lasting four months to bring almost total functionality back.

I know how desperate you feel- but please know that PEX is not the only way to healing.

Have you tried steroids?

Have you considered residential intensive therapy (he is old enough for McLean - Dr Jenike- PANS friend- runs it)

[LNN]

I also read on another of your posts about your son's declining IQ scores. I'm hoping another member chimes in, because she has "proof" that the scores can also go back up when they get healthy. Contrary to popular belief, IQ is not set in stone. It's a fluid measurement reflecting a point in time. It also only measures certain aspects of the ability to learn. It isn't a complete picture.

 

I struggled with this for a very very long time. Is my son permanently damaged, is he "dumb" or permanently impaired? I can tell you a resounding No. I've seen his abilities grow much stronger as we've gotten him healthier. Your son's IQ was measured long after the "critical" years of development had occurred in toddlerhood/early childhood. If he was bright then, you should believe that he is still bright. It's just that inflammation and changes in brain chemistry are impairing his current abilities to show what he knows.

 

Although he's been sick for a long time, you are early on in treatment. It does take time - a lot of time - with the correct treatments - to get back to good health.

 

Like PowPow, we've used a combination of treatments - some worked well, others not so much. What works for one child doesn't always work for another. But the key is to keep trying and keep learning. This is not a cookie-cutter illness. It takes super-human strength to keep digging, often with several types of doctors and approaches - but there are many on here who've been able to get their children back despite years of illness and misdiagnosis.

 

Pex might help. But don't despair if you can't get it. You have options and your son is NOT lost.

[dcmom]

I can kinda agree and disagree with LLM and Pow Pow.

 

Both of my girls had pex.

 

UHC pre approved it for my first child, then denied it post procedure. Eventually covered it.

 

(BTW Georgetown was in network for us, so PEX cost them about $5k)

 

Then they denied a pre approval for it for my second child, we paid in cash ($26K)- thanks to my dad- to get her in quickly, and they eventually approved that as well, hospital reimbursed us.

 

Having to deal with the insurance company and financial issues ON TOP of having a child in crisis made me VERY ANGRY (I don't usually get angry). It was very upsetting and made me feel helpless. It was probably one of the lowest times of our pandas journey.

 

PEX for my kids was a miracle. However both had overnight onset and were fairly debilitated, and got to pex relatively quickly. For both, the recovery was close to immediate (one was 100% prior to leaving hospital, the other was 95% within a couple of weeks). For us it was TOTALLY worth it, to end their suffering in a FAST way.

 

However, it certainly was not a cure. It did bring them both to (or VERY close to) their baseline, which I think was a huge help in keeping them well, and letting us see what we were shooting for. They both have had episodes since, however we have been very aggressive, and they have not needed pex again.

 

I don't know your child's story. I certainly don't think pex is the only answer- many have luck with IVIG, and we (along with some others) have also had luck with IV solumedrol (steroids). I know someone who has had luck with a monthly 5 day steroid burst. Our doctors need to get creative! I would certainly advise prior to pex, that you take care of any infections (although we have not had a chronic infection issue- I know others have), take care of all dental work, and have an aggressive plan in place to treat flare ups within 24 hours post procedure. After pex, I would advise NO vaccines, and trying to keep life as healthy as possible (eating well, sleeping, minimal stress).

 

Hammer the insurance company. It was on our final appeal that they approved (which was third or fourth?).

 

I feel for you- everything about this sucks!

[Kimflow]

1tiredmama,

Sorry you are having this stress on top of everything else. I hope you can find the strength to keep pushing through even though you feel like dying sometimes from all the stress and pressure and setbacks. I understand...years of stress, wanting crystal balls, seeing kids suffer, I get it, we all get it. Hold on....

K

[JAG10]

1344501868[/url]' post='144251']

I also read on another of your posts about your son's declining IQ scores. I'm hoping another member chimes in, because she has "proof" that the scores can also go back up when they get healthy. Contrary to popular belief, IQ is not set in stone. It's a fluid measurement reflecting a point in time. It also only measures certain aspects of the ability to learn. It isn't a complete picture.

 

I struggled with this for a very very long time. Is my son permanently damaged, is he "dumb" or permanently impaired? I can tell you a resounding No. I've seen his abilities grow much stronger as we've gotten him healthier. Your son's IQ was measured long after the "critical" years of development had occurred in toddlerhood/early childhood. If he was bright then, you should believe that he is still bright. It's just that inflammation and changes in brain chemistry are impairing his current abilities to show what he knows.

 

Although he's been sick for a long time, you are early on in treatment. It does take time - a lot of time - with the correct treatments - to get back to good health.

 

Like PowPow, we've used a combination of treatments - some worked well, others not so much. What works for one child doesn't always work for another. But the key is to keep trying and keep learning. This is not a cookie-cutter illness. It takes super-human strength to keep digging, often with several types of doctors and approaches - but there are many on here who've been able to get their children back despite years of illness and misdiagnosis.

 

Pex might help. But don't despair if you can't get it. You have options and your son is NOT lost.

 

Hi Tired, LLM was referring to this post on my dd12's standardized testing

 

http://www.latitudes...27

 

My girl too was tested at 6 with a 127, then a cognitive snapshot at 9 in 3rd grade indicated IQ 90... How ironic is that?!?!?! IQ testing is known to be "softer" the younger the person is tested up until age 8.....but not 40-50 points softer!!! It is not a multiple choice test, there is no way someone scores better than what they are capable of, but there are unlimited reasons why someone can perform worse than their capabilities. This PANS beast being one of those reasons. My dd12 went from the 10%ile to the 93%ile in math between 3rd and 6th grade; the difference being appropriate treatment for her pandas in between. She has not had PEX, but 9 IVIGs and 2.5 years of abx. And systemic yeast treatment because of the abx....it all gets complicated, no recipe or cookie cutters, but even a tired momma who musters up the tenacity can beat this beast taking it one day at a time. I'm waiting for the doc to call me right now for a follow-up; it's been 4 months since my dd's last IVIG and she is doing great. She may have even gotten strep in the middle of July and the only evidence is her ASO shot up- i guess that's what they call immunity. We are coming up on one year post the onset of menses for her; that and the IVIGs and a little help from my friends with supplements has helped tremendously. I think it's possible for this to be drawn out longer in boys.

 

You will find a way even if it's not the way you anticipate right this moment. You will.

Jill

Edited August 9, 2012 by JAG10

[kos_mom]

Interesting topic on IQ decline. At 5 my DD scored 128. On standardized testing she was >99 percentile at ages 6, 7, and 8. At 7 qualified for JHU Gifted and Talented program through special test. Subsequent standardized test scores through elementary and junior high all in high 90s. And then in sixth grade she did IQ test (took place one week after a pneumoia that had her home sick for a week)that put her at 108. The tester insisted that that test was much more representative of her IQ than any standardized test but could not provide explanation for test scores muh higher than expected for that IQ. In seventh grade she took SAT and scored 480 in each of English, math, and writing. DD fell apart in high school--can't remember ACT scores but remember high in reading and writing, and much lower in math, science, and grammar.

[Joan Pandas Mom]

Another breaking heart for you here too, BUT I know he can get better. My son is turning 18 in a few weeks and I was were you are about 1 1/2 - 2 years ago. He had 6 IVIG's, long term abx. and intensive ERP at the OCDI. He couldn't leave the house 1 1/2 years ago. He just got his driver's license yesterday!!!! It is NOT TOO LATE. Don't give up.

[1tiredmama]

I'm not understanding why Cigna is denying Pex. Here's they're coverage guidelines for 2011-2012 http://www.cigna.com/assets/docs/health-care-professionals/coverage_positions/mm_0153_coveragepositioncriteria_plasmapheresis.pdf and on Page 2 it says it covers Pex for Pandas specifically. This policy has been in place for years. They covered my son's Pex in '09. Don't ask me how it was coded - I didn't get involved. It was handled thru Dr L's office.

 

That said, I too had very high hopes for Pex. It did help. I have no regrets. But in our case, it wasn't lasting and we eventually found other ways to address issues. It took a few years, but my son is a zillion times better - not out of the woods but a far cry from the bad old days. A completely different kid.

 

So try not to despair. If your son was once bright and functional, you can get him that way again. I in no way believe in the permanent damage theory. Sure, there can be habits that have to be unlearned, new pathways that must be forged in the brain. If you hit your thumb a dozen times, I'm sure it may always be tender and prone to repeat injury. But I don't think that means it becomes non-functional. There are other options still at your disposal and I don't think it's the end of your road, even tho I'm sure it feels that way right now.

 

Thank you, LLM, for encouraging me not to give up hope for ds's intellect. The fact that your son is "a zillion times better" warms my heart.

 

I read your link to CIGNA'S policy. They are getting around it by offering to pay for PEX one day outpatient. I've been told that it cannot be done that way, though.

[1tiredmama]

I want to thank each and every one of you for your kind words. I couldn't even come back to this thread before now because it was just too painful. Thanks to you, I think I can go into ds's follow-up appt at the end of this month, look Dr. L square in the eye, and say without crying, "Okay, now what?" There must be other ways to get my son healthy. I came back (mostly))from Lupus with treatment. I'm wondering if the same kind of treatment might help with PANDAS in an older teen since both are autoimmune disorders.

 

IVIG is definitely out. It isn't covered, and ds does not have immuno-deficiencies anyway. I'd like to try an immuno-suppressant.

 

Right now, I am waiting while Dr. L. appeals the denial. I was told on Friday that she had called CIGNA, but the person she needed to speak to was not available. I'm trying not to think about it. It just upsets me. Staying busy helps.

 

Thanks again for being there for me. No one else could really understand this. I knew you would.