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A healthy, functioning son is worth more than a mound of medical bills

I am writing in response to the article, “Medical Bills Bankrupt Families of Mentally Ill Children,”  which is a topic poignant to my family at this time.  For the past few weeks, I’ve been checking our mailbox every day, making the walk with a nervous lump in my throat, and returning — hands full of junk mail and heart fuller with worry over a bill that should have been here by now.

Our son, who is 12, has been in a residential treatment program 1,200 miles from home for six weeks now, and we await the bill that weighs on us like a 10-ton question mark.  He is receiving therapy to treat complex symptoms related to Tourette Syndrome and Obsessive Compulsive Disorder.

To our best estimation, the bills we will have received by the time he is discharged some time this spring will cost us anywhere between $15,000 and $400,000 — a big range, but every bit hinging upon whether our insurance company deems this intensive, residential program “medically necessary.”

The hospital required a deposit of $30,000 at the time of admission that would cover our son’s first  30 days of treatment, and we have received notes from our insurance company informing us they’ve approved his first three days, and then five days of treatment — good news, yet little comfort when our son will likely require a 4-plus-month stay at this facility.

Our life prior to his admission is difficult to describe, except to say that we were at a level of nonfunctioning unfathomable to most.  Our son couldn’t tolerate hearing his name and would collapse in pain if he heard it uttered to or in reference to him.

Over the past two years, he grew intolerant as well of any pronouns referring to him (you, he, him, etc).  Any initiation of conversation whatsoever would trigger a tantrum intensely severe and often including rage-filled, self-injurious behaviors such as punching walls, hitting his head off the counter and lying on the pavement and scraping across on his bare back.

Because of the nature of his OCD,  a “wrong” answer from us (this meant a “no” when he needed to hear a “yes” or vice versa) or even a fleeting glance at him when he “didn’t want to be looked at,” could set him into an exhausting loop of ritualistic repetitions.

This happened during a recent holiday when he unpacked  our car loaded to the roof with food items, gifts from relatives, etc., then packed it again, unpacked it once more, re-packed it, and when an hour later, I locked him out of the garage to keep him from continuing, cried himself to sleep, as he did so often.

And what I have described here is such a small portion of his symptoms, characterized by a large number of exhausting motor, verbal and mental tics.

In the years leading up to our decision to admit him to a psychiatric hospital, we had seen six different doctors /therapists, tried enough medications and supplements in varying amounts and combinations to fill a small dump truck, and because of some of their more serious side effects, my son, in his 12 short years, had more blood tests and EKGs than most people in a lifetime.

In a time of desperation, we drove him nearly two hours for almost a year to see a psychologist, a renowned expert in TS, and we paid thousands for the initial visit and hundreds more for each visit thereafter.  After a year, we’d spent $15,000 and were no closer to any relief for our son, who continued to suffer profoundly.

This wasn’t because of lack of effort or expertise of our doctors, but the reality that TS is so difficult to treat and research too scarce.  In addition to those costs, we were paying a therapist close to $200  (only 50 percent covered by our insurance)  each week to work with  our son who, we eventually realized, was too sick to respond to outpatient therapies; nevertheless, two years and thousands of dollars later, my son’s symptoms were worse than ever.

We have no idea what looms ahead, should our insurance company decide that our son’s residential treatment program is not “medically necessary.” When I go to our mailbox one day to discover we owe more than our house costs for our son’s current hospital stay, we’ll then begin the process of triaging payment of bills, and see where this takes us.

We can only hope, regardless of whether we end this year in danger of financial ruin or just in debt that will hang over us for an unknown number of years, that our son comes home to us healthy and able to function more ably in this world that, so far, has given him more than anyone’s share of grief and heartache.

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  1. Hey my name is Andrew
    I read your messages, all I can say is WOW!
    It hurts me reading your story.
    I am a 45 year old Touretter with one of the most severe cases of TS out there. With both very physically and verbal yes Coprolalia including racial tics. I am h as happily married to a non Touretter and work for the Federal Government. So just because one has TS they can still lead great and productive lives.
    Listed Like so many I have tried all medications under the TS world but the side effects are far more debilitating then my tics themselves. So current waiting to have Deep Brain Stimulation. Because I am in constant physical pain due to 38 years of ticcing and osteoarthritis from the tics now.
    Other then this I am happy and well and enjoy life to the full. Humor helps a lot as well as laughter. And laughing at ones self. There is no side effects in laughter.
    God bless all of you who contributed here.
    I feel every ones pain no matter how great or small. Don’t ever give up on the good fight.
    And lastly.
    Always look at the Abilities and Not the Disabilities.
    With kind regards
    Andrew. From South Jersey.

  2. Hey,
    My name is Andrew,
    I just read the messages.
    Firstly all I can say is WOW.
    What a story and a mess with insurance etc.
    I line in South NJ am a 45 year old Touretter. And have one of the worst cases of TS known out there.
    With serious physical and verbal tics yes cursing and racial tics
    I am married to my wonderful wife Amy 12 years now and hold a Government job 8 years. So even with severe TS one can live a great and happy life and be successful. And having a good sense of humor and laughing helps a huge amount.
    Like so many I have tried every medication in the TS world with no joy but debilitating side effects far worst then my TS.
    I am currently waiting to under go Deep Brain Stimulation. My reasoning is my body is bruised up and my joints are incredibly painful due to 38 years of severe tics. And serious arthritis from ticcing so much. So this is really the only option left for me. Despite my severity of Tics I am happy and well and enjoy life to the full.
    And ad my statement says no one will take away my zest or happiness for life away.
    Life is too short to be unhappy etc.
    But at the same time I do feel every ones pain who suffers in some way no matter how great or small from TS.
    God Bless you all who commented on this page.
    Lastly Don’t give up.
    Look at the ability not the disability

  3. We live in a world in which, without insurance, a sleep study could cost more than $5,000. How is someone supposed to afford that? I feel for you and your family and hope that some kind of insurance/payment compromise is able to be reached.

  4. God bless you and your family as you try to get through this. I have a child with TS, and I can’t even imagine what this level of struggle must be like. Are you getting an financial support or other help from family, friends, organizations, etc.?

  5. I’m so sorry that you and your family has to go through this. I hope it works out for the best and that the bills are at an asbolute minimum. But I think the angle that might be missed here though is what the little boy is going through. What’s it like for him to be away from his family during the tough time for him? He must feel so lonely.

  6. Oh Tracy, we are sending you many, many hugs. I know from meeting you at Camp Bernie and other event what a lovely person you are and what a beautiful family you have. We are sending wishes full of healing for your son, and your whole family. I will be thinking of you often and praying for a good outcome – both in the treatments for your son, and the response from your insurance company.

  7. Tracy, our family knows this brand of heartache all too well. It is absurd that, in addition to doing the heavy emotional work of seeing your child through NECESSARY treatment, you must also gear up for battle with mental health insurance companies. But battle you must. There is a federal law that went into effect in 2008 – the Mental Health and Addiction Parity Act (aka the Wellstone Act) – that essentially requires mental health insurers to give coverage analogous to “regular” medical health coverage. Invoke it. Many mental health insurance companies have been edging it for years, doing every they can to make it difficult for the health care consumer. Call the NJ Dept. of Banking and Insurance and file a complaint. Call your legislators. Rattle whatever cages you can. You are in our thoughts and prayers!

  8. Your story is heartbreaking, and I’m hoping your son is getting the best treatment and assistance possible to help him cope in this world. Thank you for sharing. It reminds each of us as parents that we’ll stop at nothing to give our children a fighting chance. Sending prayers.

  9. My 14 year old son has TS, OCD, ADHD, Asbergers, and is Bipolar. He has very similar rage attacks and has just been expelled from the most theraputic school in the state of NJ($80,000.00/yr). He has been hospitalized 3 times, been refused at 4 Partial Hospitalition Programs and is is now at home getting tutored 2 hours a day.
    I pay $60.00 a day/$1,800.00/month for health insurance and our carrier does not cover residential treatment. We have enlisted the help of a CMO(Care Management Organization) and have visited one of three residential fascilities they have recomended. If the other two are anything like the first he will not be attending. There are no fascilities in this state that provide the therapy he needs. The Board of Ed. and Medicaid refuse to cross state lines.There are several places in the country that can provide the therapy for $887.00 per day with an up front cost of $28,000.00
    My wife works 4 days a week to pay for health insurance while I stay at home to take care of my son. When my wife is home I go to work. We are rapidly spiralling towards bankrupcy. All of the assets we have accumulated are for sale. We heat our home with wood because we can not afford the oil.
    Could the tradgedy in Conneticut been averted by more gun control or just better availability to psychological services.

  10. My prayers go out to you and your family and son. And prayers that the insurance company will cover all of the expenses. we’ve spent alot of money on doctors with no great outcome. Unless you have a child with TS, you have no idea what it is and how hard it is.

    • Hi, I don’t even know what to say. I wish there was an answer for you and your son. Where in NJ do you live? Maybe we could meet and talk. Fortunately for me, I think my son just about outgrew his TS after college, although some slight, barely noticeable, tics linger now and then. It’s always helpful to find someone you can feel comfortable talking with.

    • I am so sorry your family is having to endure so much. I am praying that God will provide for you and give you unexpected Blessings. We have a son with TS and know that it is not easy.

    • I am so sorry your family is enduring so much. I am praying that God will provide for you and give you unexpected Blessings. We also have a son with TS and know that it is not an easy road.

  11. Oh my dear….this is one of the saddest stories I’ve read, and I’ve seen some doozies. Tracy, I wish the best for you and your family. Please keep us updated. Cheers, hugs and prayers for you all.

  12. my god that is an emotional story and I sincerely pray for that boy and his family 🙂 Matt

  13. We, too, are trying to meet the financial costs of a child with TS. Our struggle is nothing compared to yours, but I understand what you’re feeling. The financial cost is only magnified when treatments don’t work. I hope this residential program provides you and your son with some relief. If it does, it is worth every penny and then some. Good luck.

    • Hey,
      My name is Andrew,
      I just read the messages.
      Firstly all I can say is WOW.
      What a story and a mess with insurance etc.
      I line in South NJ am a 45 year old Touretter. And have one of the worst cases of TS known out there.
      With serious physical and verbal tics yes cursing and racial tics
      I am married to my wonderful wife Amy 12 years now and hold a Government job 8 years. So even with severe TS one can live a great and happy life and be successful. And having a good sense of humor and laughing helps a huge amount.
      Like so many I have tried every medication in the TS world with no joy but debilitating side effects far worst then my TS.
      I am currently waiting to under go Deep Brain Stimulation. My reasoning is my body is bruised up and my joints are incredibly painful due to 38 years of severe tics. And serious arthritis from ticcing so much. So this is really the only option left for me. Despite my severity of Tics I am happy and well and enjoy life to the full.
      And ad my statement says no one will take away my zest or happiness for life away.
      Life is too short to be unhappy etc.
      But at the same time I do feel every ones pain who suffers in some way no matter how great or small from TS.
      God Bless you all who commented on this page.
      Lastly Don’t give up.
      Look at the ability not the disability

  14. I’m a grown man, and I’m in tears right now. I’m so sorry that you and your family have to endure this Tracy. Our son has TS, too, but our expenses haven’t been nearly as bad, and we’ve thought we had it tough. There is always someone out there who has it worse, and that perspective helps me look at each day new and different. I wish the best for you, your family and your son.

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