This time three weeks ago, I was sitting in an Embassy Suites up in Chicago. My son Jesse had just received a third IVIG over the course of two days. I was playing on my smart phone in the front part of the hotel room. My husband was watching TV over in the bedroom. Jesse had been watching his iPad in the closet (can you tell we’re a family of Introverts? LOL!). My son came into where I was, and we had this exchange:
Jesse : “Thank you.”
Me: “For what? For doing the IVIG?”
Jesse: “Yeah.”
Then Jesse wandered off to the bedroom to watch TV with his dad for a little bit. I immediately posted our exchange with commentary on my PANDAS Sucks Facebook Page:
“Our PANDAS/PANS kids should not be thanking us for getting them the medicine and treatments they NEED. Sigh. We realize we are lucky we could do this for Jesse. But luck does not belong in healthcare and in getting your kids the help they NEED! PANDAS/PANS is real. The treatments work. There may not be some magical current IVIG study that the insurance companies keep asking for (except it does exist–ugh), but the effects of IVIG and other treatments play out in many individual households every day. Moms and Dads get their Sons and Daughters back, and Boys and Girls get their lives back. The system is broken. It should not be such a struggle to get help for your kids so they can be healthy again.”
It is a sad world when a child thanks their parent for giving them medicine they need to get better. In a perfect world, the struggle of getting the IVIG would have been non-existent. My son would have gotten sick and automatically been given appropriate medical treatment for PANDAS. Or maybe we should have shielded Jesse from the reality of the difficulties of getting PANDAS treatment and IVIG. I don’t know.
And I’m not sure Jesse’s “thank you” came from knowing he was lucky to be getting IVIG. In the days leading up to the procedure, he’d been asking repeatedly if the IVIG would help him. He really just wanted it to work so he would feel better again. I could only say that we hoped that it would work, but there was no guarantee. But that he’d responded favorably before, so hopefully he would do well again. (NOTE: We have seen good results already in the past three weeks. Yay!)
Getting the needle/tube in my son’s arm was a process too. The nurses almost had it, but his anxiety took over and he yanked his hand away and refused to cooperate. So Jesse is really thanking me for having four people hold him down so they could place the IV that would deliver crucial medicine his doctor felt he needed. If you follow my Facebook Page, you may know that our health insurance disagreed about the need for the IVIG medicine. Disagreed not just once…but twice.
The first time Jesse’s IVIG was denied, it had been reviewed on the medical side versus the pharmacy side.The insurance company felt was “not medically necessary”. They told me to look at other treatment options. I asked the customer service rep what she would recommend since the letter said I could call “with questions about which alternative treatments are covered benefits” in my plan. The rep told me to talk to my doctor about what he felt I should do and then call back to discuss coverage. I told her that my son’s Specialist recommended IVIG, but her company said no. When they ran it back through correctly, I held out hope…but nope. The denial letter I got from the pharmacy side told me that my son was not covered because he did not have a diagnosis from a list of conditions where the medicine was covered. They did write “you may choose to purchase this medicine at your own expense.” Paying for the IVIG myself was the ONLY choice at that point.
Basically, here’s what I said to insurance, “I’m going to do what our doctor thinks is best for my child regardless of what you say.” Here’s what I was actually thinking…”@%&#!!!!”
Our previous health insurance company paid for TWO IVIGs. The current company we have is known to never pay for IVIG in PANDAS/PANS. I plan to appeal the denial, but honestly I have been busy and exhausted because I have a sick kid and don’t have the time to fight with health insurance. Ain’t nobody got time for that! I’m sure there’s some sort of time limit, and I’d better start hustling. It was a 2 year battle to get the second IVIG paid for and it had been pre-approved, but the insurance company did finally pay (after the provider tried sending us to collections twice for the $21,000+ bill we did not owe). This time, we footed the bill because our health care system is broken, and my child’s health and well-being depended on him receiving IVIG.
Fortunately, my husband and I are in a situation where we have a way to finance IVIG treatment. We also were able to take the 5 days to travel out of state and stay in a hotel. Our IVIG provider offered a cash discount too, which helped reduce the cost, but there was also a fee for the PANDAS Specialist (which is worth it to know you have that expertise!). I read every day on Facebook about PANDAS/PANS parents unable to afford IVIG after insurance denied coverage. Or I see PANDAS/PANS fundraising pages. Or parents can’t get an accurate diagnosis and effective treatment for their PANDAS/PANS kids. Doctors are still using the word “controversial” to describe PANDAS/PANS, which is sooooo frustrating because it’s NOT CONTROVERSIAL! It’s only described this way because of certain Dissenters, Disputers, Doubters, Deniers that refuse to make the leap and acknowledge PANDAS/PANS despite the growing supporting research. Not to mention all of the real life examples of children who DO GET BETTER with correct diagnosis and appropriate PANDAS/PANS treatment. But this “controversy” nonsense means that sick kids suffer…their entire families suffer.
And Insurance Companies keep PANDAS/PANS from being mainstream by NOT covering it, which does NOT mean that it does not exist or is controversial. It simply means that whatever premium you are paying might be useless if your child has PANDAS. Or insurance will pay for partial treatment like the Infusion procedure but NOT the IVIG medication (which makes no sense because you can’t have one without the other). The medicine part, or the part you are usually stuck paying, costs about $125 per gram and is dosed at 1.5g – 2g per kilogram of the weight of the child. (For example, Jesse weighs about 80 lbs and received 55 grams of medicine.) IVIG infusions can cost into the tens of thousands of dollars. Or you can get coverage for inappropriate treatment like SSRIs that will mask the symptoms, or CBT Therapy that does very little while your child is in an exacerbation…but can help with residual symptoms later. Unless you treat PANDAS/PANS appropriately with antibiotics, steroids and/or IVIG, you’re never going to get to the root cause, which is auto-antibodies and infections. Yes, there are other alternative treatments that work for some children, but those will come out-of-pocket anyway. But if you want to stay in the allopathic realm of medicine, chances are you will be footing much of the bill unless you’re lucky when it comes to insurance coverage.
Being “lucky” to get insurance coverage for important medical treaments just seems wrong when it comes to a child’s health and a serious condition.
We are told not to even talk about PANDAS or PANS and to not to say the words to the insurance company for fear that they will deny you. I made sure NOT to use the word when working for precertification of the IVIG procedure. But it turns out that the word PANDAS was used in the letter the doctor sent to the insurance company. I didn’t know that until I got the notes to have for the appeal process. And at first I was angry. I had gone to great pains to NOT mention PANDAS and simply gave the diagnosis codes I’d been told to give. But ya know what?! My kid DOES have PANDAS. I should not have to hide that fact. It’s real! It exists! It’s treatable! And now I have the worry that the insurance company that covered medications and tests LAST year, might not cover them now that PANDAS is in my son’s records. We will have to cross that bridge if we come to it though.
It’s hard to believe that a rational person could hear that a child has BRAIN INFLAMMATION because their brain is being attacked by auto-antibodies after a strep infection or other illness and NOT want to help. Or see the codes for Autoimmune Encephalitis on a precertification and not want to cover it. But I received TWO denial letters from our health insurance. So at least two people didn’t feel it was necessary to give Jesse the medicine his doctor, a PANDAS Specialist, felt he needed. And not only did they say NO, but they also put the onus on me to figure out what to do about my son’s health. I was supposed to go back to our doctor and tell him that his expert opinion didn’t matter to me and ask what else could we do because some strangers at an insurance company denied IVIG for my son. Ummm…no.
My child didn’t elect to get PANDAS. This wasn’t a lifestyle choice. We had no control. It just happened back in 2010 after he had strep throat at the end of December 2009. In hindsight, it possibly happened when he was younger. Regardless of when it happened, it’s not like anybody asked me if we could handle it financially, emotionally, and physically before he got sick. It just happened. BOOM! And furthermore, I feel that the nine months I spent trying to get him diagnosed made his PANDAS worse, creating a chronic condition. I had no idea what was happening to my son. And even after I found PANDAS as an explanation within about 3-4 months of onset of his behavior changes, the pediatrician felt it was NOT PANDAS. But come to find out, my son DID have PANDAS. This gap in diagnosis and treatment is such a HUGE issue, and I’m not sure how to fix it. I do know that Insurance Companies NOT covering treatments is not the best route to go though, especially when kids have sometimes already been suffering for months or years before being treated. Even a day of suffering is too much. Sigh.
I’m frustrated that strep throat brought PANDAS back to my son in an exacerbation form. We’ve done daily antibiotics since November 2010 after his first IVIG that brought him back to us after months of mothering a very different child. His second IVIG was necessary but was also precautionary since we didn’t know where baseline was. He did continue to have flares/exacerbations, but we could manage them until we couldn’t anymore. He had strep back in September and again in December. Then in February, he had a 7+ hour close proximity strep exposure. Three strikes of strep did it. I thought it was the strep in December that shifted things, but Jesse said he has felt different since September. I did everything to try to avoid a third IVIG, but it WAS necessary. I reject the insurance company’s opinion that it was not needed. My husband and I talked the other day about how we had to not think about all the risks and complications that could happen during IVIG in order to go through with it. The benefits of the blood product outweighed the risks and side effects to us and to our doctor. Plasmapheresis ( filtering of the child’s own blood) is another, riskier treatment option, and ironically, that procedure would have likely been covered by our insurance (see #16 here). But many PANDAS/PANS doctors prefer IVIG because it is less invasive, easier to administer, and effective for PANDAS/PANS.
We all want this PANDAS/PANS treatment issue to be fixed. It been said that the PANDAS/PANS Treatment Guidelines and Protocols are being determined and will be published soon. I hope that they are effective and far-reaching, and that they come with some kind of real hope for families. Will it make getting effective treatments easier? Will there be a PANDAS/PANS diagnosis code? Will we be brought under Autoimmune Encephalitis/AE umbrealla where PANDAS/PANS very likely belongs? (This AE thing has been discussed for years!) Why isn’t the consensus paper enough for doctors and the AAP and insurance companies since it IS based on relevant studies. The PANDAS Physicians Network lists IVIG as a viable treatment. NIH/NIMH mention IVIG and plasmaphersis on their web site for extreme cases. And it’s no wonder kids become extreme cases when diagnosis can take so long, and treatment is so difficult to get prescribed. Even if you can get IVIG prescribed, you may have to delay treatment while you save up or do fundraising if insurance won’t pay.
My son was already diagnosed with PANDAS and was being treated, and strep still took him down again. BOOM! Why? I don’t know, and I certainly can’t wait years for a study to tell me. He needs help IMMEDIATELY when it’s clear that he is suffering from BRAIN INFLAMMATION due to PANDAS. Every health insurance company telling me NO is not going to stop me from getting him his necessary treatment. And how pompous has the health insurance industry become when they feel that they can deny coverage for what my PANDAS Specialist recommends and tell me to look at other treatment options. No. Their denial is not going to make me turn a blind eye to the treatment I know my son needs. It simply means that I have to pay out-of-pocket. Not everybody can do that, which is where the reality of being a PANDAS/PANS Family gets tragic real fast. This is especially true if there are multiple PANDAS/PANS kids in the Family.
There are families and organizations fighting and advocating every day to help PANDAS/PANS kids. We should not have to be working to convince doctors that PANDAS and PANS are real medical conditions. There should not have to be legislation to get our kids the treatment they need from health insurance companies. Can you imagine it being necessary to have a law for insurance companies to pay for insulin for diabetes? Or fighting tooth and nail to get an orthopedic surgeon to fix a shattered bone and apply a cast? Or begging an insurance rep to cover the removal of a burst appendix ? What part of BRAIN INFLAMMATION sounds like it is elective? It sure sounds medically serious to me and needs immediate attention. Why is delaying treatment for our kids okay? Oh. Right. It’s not okay. THAT’S the elephant in the room that we’re not supposed to be screaming about. AHHHHH!!!
Jesse’s IVIG – Day One
Jesse’s IVIG – Day 2
So my child THANKED me for buying him the medicine that he needed to kick his PANDAS. Talk about my heart breaking. But there are thousands of kids that need this treatment and can’t get it. Maybe the child is misdiagnosed or undiagnosed and considered a behavioral problem. Maybe that child goes to a doctor that doesn’t “believe” in PANDAS who recommends anti-depressants and/or mood stabilizers and other medications that won’t treat the underlying physical illness and infections. Or maybe that child’s insurance company says no to IVIG, and the parents have to delay treatment while they figure out how to get possibly over $20,000 AND eat AND pay all the rest of their bills. Or what if the parents have multiple PANDAS/PANS children and can’t afford more than one IVIG? How unlucky.
I’m not sure how or when this PANDAS/PANS stuff will get fixed so our Sons and Daughters can recover. I only know that it’s needed to be fixed for a very long time. Fix it. NOW!
Love,
P.S. More Blogs coming soon about the actual IVIG procedure. If you have questions you’d like me to cover, you can message me here.
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Sarah is a PANDAS Mom to her awesome son, Jesse. She spends much of her time on Facebook, making to-do lists, and listening to music, especially Depeche Mode. She drinks a lot of coffee, likes a good red wine, and has been known to hide chocolate in her pantry. Sarah really thinks PANDAS Sucks (the autoimmune disorder, NOT the bears!). PANDAS Sucks exists to tell the collective story about PANDAS/PANS. Sarah wants to empower other PANDAS Parents and let them know they’re not alone. See also Facebook, Twitter, and Pinterest.
Note: Please do not ask for doctor referrals or specific medical advice. This blog/web site is for info and support purposes only. I’m not a doctor. P
PANDAS Sucks 
I could have written this.
Fight on!!!!!! This needs to be set right for our kids.
Yes it does need to be fixed!
You wrote my story. Thank you.
I’m so sorry you are going through the same thing. Some day it will get fixed for our families. Sigh. ❤