Friday, June 19, 2009

Biomedical Treatment was Too Expensive and Too Late

This post is in memory of Isaac. This little boy died on Saturday when his heart finally gave out. He was waiting for his third heart surgery, which would have taken place in September. Unfortunately, the strep and staph infections in his blood were too much for him to fight off and the attack of multiple infections was ovewhelming.

I met Isaac and his parents only once; it was a few months ago when they came to Cady Wellness Institute to meet with a colleague. Because Isaac was a child who had received an Autism Spectrum Diagnosis, I was asked if I had time to talk with the parents about what might be done to help improve their son's overall state of wellness by implementing biomedical interventions. As best I can recall, I spent about an hour with Isaac and his parents. This was not an official appointment and they were not charged anything, since they were not patients and we were simply having a "chat." While I talked with his mom and dad, Isaac played on the rug in my office. Like many of the children I see, he liked the cars best and like many of the children I see, he especially liked lining them up in rows. Isaac was similar in other ways to the children I see professionally, in that he was a beautiful little boy. He was small for his age, with very blonde hair and extraordinary eyes that were the bluest of blue.

I talked with Isaac's parents about biomedical interventions for autism, and made several recommendations regarding steps they could take on their own, to improve his body's ability to fight off the multiple environmental and immune system assaults that are common in children on the spectrum. Unfortunately this family, like so many others, did not have the funds to pay out-of-pocket for biomedical treatment in the tri-state, and they were also unable to travel to one of the larger clinics around the country.

Because Isacc's parents were not able to have their son seen on an official basis due to the financial strain of doing so, much of what I am writing in this post is speculation. However, it is speculation based on experience. I have seen and spoken with MANY parents and families in the last four years whose children clearly needed biomedical help, but who simply could not afford it. (I have also seen families whose children clearly needed biomedical help, and they COULD afford it but believed it was too expensive and not worth dedicating the resources.)

There are many children - no, there are MANY children on the spectrum (including kids diagnosed with autism, Asperger's, ADHD, PDD, Bipolar disorder, OCD, and ODD) that have underlying medical problems that are never diagnosed and treated. One of the MOST frequent of those problems is Strep infection. When a child has a strep infection that is untreated, it can damage the heart. I don't KNOW that this is what happened with Isaac. All I know is he died because his heart gave out while waiting for his third heart surgery, AND he had Strep and Staph infections in his blood. I cannot recall the exact conversation I had with Isaac's parents, but based on the conversations I have had with EVERY parent of a child with ASD who has sought my help, I would bet the farm that I brought up the importance of checking his Strep titer. This is something I routinely recommend for ALL kids I see, and for ALL kids on the spectrum, especially those with anger outbursts and OCD tendencies. The reason is because PANDAS (Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus) can be treated! And it is often EASY to treat with antibiotics. That is, if you can get your pediatrician or family practice doctor to run the test and give the monthly shots of bicillin. There have been many cases when I have talked with families who could not afford to have their child seen at my former place of employment, and for whom I have recommended they ask their primary care physician about running a strep titer, and for whom the response has been, "That's experimental. There's no proof. I'm not going to do it." For those physicians who think obtaining a blood test to check for strep is "experimental," I take this opportunity to say, "Shame on you." I wonder how many other children with autism have died from heart problems, simply because their physicians refused to check their strep titers - or because they never thought to do so.

Children with autism are not hopeless and they do not deserve to be ignored by the medical professionals simply because they have received an autism diagnosis. These children are medically sick and if we do not care enough about them to do the tests that are necessary and to treat the infections that are wracking their bodies, then WE are responsible when something like this happens.

To Isaac...and to all the other children who currently cannot afford to get the treatment you so desperately need and deserve: I am so sorry. I pray you will have an eternal life in heaven that is completely joyous and free from pain. God knows you deserve it, especially after the way we have failed you on earth. Eternal blessings to you, Isaac.

6 comments:

  1. Marci, Your last two paragraphs brought tears to my eyes. It must be so frustrating for you as a practitioner to not be able to help some families who have limited financial means. I will be praying for Isaac's family.

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  2. That was so sad, I spent half the story in tears. I know exactly what it feels like to have to make some really tough decisions when it comes to financial need and your childs health. Sometimes no matter how much you want it to be the money is not there and as a parent you have to sit down and decide which treatments, meds, foods, are the most important. My heart goes out to Isaac's family there are many decisions and many heartaches that a parent should simply never have to go throuh. I have been lucky, I have learned many "cheap" routes to help my child. Hopefully I will beable to pass that knowledge to families like mine with limited financial means. I will pray for Isaac's family. It is just so sad. Jessica McCormick

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  3. Researching PANDAS, as I type this, and I pray our MD is willing to go where most Physicians haven't!! Tracy A.

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  4. What a great post! How true that so many ASD children are suffering due to lack of funds. May God grant them some semblance of peace in their painful lives!

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  5. :( great post but so disheartening

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