Not All Diagnosis’ Fit in the Same Box — 5 Minutes for Special Needs

Not All Diagnosis’ Fit in the Same Box

by Gina


The problem with diagnosis is….

It puts people, individuals with likes and dislikes, quirks, needs, abilities and disabilities in a box. Cutting out their very individuality that makes one person differ so entirely from another. The differences between them no longer seen. In essence treating one person with an ability within a diagnosis the same as the person without an ability within that same diagnosis.

Take services. Epilepsy can cause a number of images. Friends falling to the ground with Grand Mal Seizures is the most common image people conjure. But two people with epilepsy can look vastly different. There are Grand Mal seizures, clonic-tonic seizures, absence seizures and an amazingly large number more. One might be treated with the first mild medication they are prescribed, effectively reducing or eliminating most future seizures. Another may need to a combination of two medications just to reduce the number of seizures with additional less severe seizures to follow, and yet another may be forced to brain surgery.

Yet insurance companies, community services and community support groups can treat them each the same. The supports they may need are different, the medications and side effects from them will be unrecognizable from each other and the services they may need may span a spectrum.

In our life, J has epilepsy. Not only has he had outward seizures (that are currently controlled from medication), but he has what I call ‘inward’ seizures. A series of spike and wave activities (I also call them pre-seizures) that constantly fire, damaging his brain in a pervasive and likely permanent manner. Where he was once at 60+% activity only at night but in both hemispheres of his brain, he now has 95% activity during the day AND night in the left hemisphere.

The goal is 0%…the same number most of us (not diagnosed with epilepsy) operate under. No mediation has worked. No combination of medications has worked. In fact, we’ve even used medication that the Europeans have used since the 1970’s but the FDA has yet to approve…no one can make money on it…but that’s another story.

Nothing is working. J’s next step is steroids (which he is not a good candidate for). Followed by an Intravenous Immunoglobulin (IVIG) infusion or brain surgery. His form of epilepsy is very rare. Though notoriously difficult to treat, not many have to move towards the IVIG infusion…therefore, insurance treats this as though it is ‘typical’ epilepsy and has denied our request for help in covering the (extremely expensive) treatment.

They essentially put him in the same box as others with the label of “epilepsy”. And because of this, they will force us to find money where there is none in order to provide they help they refuse, for the medical condition that is unresponsive to any other treatment.

Either that or they’d prefer to pay for brain surgery!

Email Author    |    Website About Gina

Gina St. Aubin is a mother of 3, one diagnosed with Cerebral Palsy, PDD-NOS, Sensory Processing Disorder, and Landau-Kleffner Syndrome (a rare epileptic disorder causing verbal aphasia) . A former Victim's Advocate turned advocate for those with intellectual and physical challenges, Gina believes being a 'Special Parent' means to discover, embrace, educate, advocate, encourage, treasure and laugh.

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1 Laurie August 9, 2011 at 7:41 pm

We’re going through this with out kiddo who is as-yet undiagnosed but nearly failed her classes last year and can’t spell or write legibly no matter how many times we work on spelling cards and penmanship! She’s currently in the “nothing’s technically a problem with her” box. Which sucks for her and our family.

2 Gina August 9, 2011 at 11:29 pm

Laurie~ That box…should NOT be. I have yet to understand why professionals would refuse to take the time to investigate…look OUT of the box to listen and give answers to parents that are invested and involved, and loving! Keep fighting!

3 Sange August 10, 2011 at 4:51 pm

We are also having an increasingly difficult time managing my almost-10yo’s epilepsy also. It is taking longer for him to learn anything new and if lessons are not repeated then they are easily forgotten. It is a hard road for a child to take (and parent to watch). My heart truly goes out to you and your family!

4 Anara August 15, 2011 at 12:12 am

I’m so sorry you and J are going through this. This situation almost sounds like the problems individuals with “orphan diagnoses” deal with. I never thought of labels from this angle, thanks for the new insight.

I’ve written about how labels can limit parents as well as children and professionals on my blog, but this is the first I’ve heard of how they can limit access to treatments and resources.

Hope a solution is found!


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