Michael's Journey: Jan-09-New Drug Approved by FDA

Wednesday, March 31, 2010

Jan-09-New Drug Approved by FDA

Read about it on the internet...why not give it a shot??

Talked with Dr. at Children's...not much research done that she is aware of and only has one other patient on Banzel. Let's go for it...not much else working at this point.

The only other thing keeping us going-our faith and the prayers from others that knew our story.

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My Precious Joy
Sweet Father in Heaven whose love is divine,
Thank-you so much for the son that is mine.
To others he'd be a burden to bear,
But to me he's a joy to which none can compare.
I know that he's different from most girls and boys,
He speaks kind of funny and plays strange with his toys.
For him, change is hard, he can get so upset,
He must seem so odd to those he has met.
Sometimes his anger gets out of control
And he has a huge meltdown which torments my soul.
Yet as I look into those precious blue eyes,
I know that you Lord gave me this surprise!

For life doesn't always turn out like we hope,
You know what is best, and it's through you I cope.
You help me to see as others do stare
That this is My precious boy, not a burden to bear.
Although he is different than some other kid,
I'm so glad that you did what you did.
When others comment "I don't know how you do it!"
It feels as arrows in my shoulder they have hit.
How could they not see what I see?
I just can't believe they don't envy me!
And then it occurs as if from above,
You knew that I was the one for this love.
You knew I'd rejoice in his triumphs through small they might be,
And urge him to greatness despite what they see.
I'd find joy and laughter where there could be tears,
I'd see his limits and proceed without fears.
You knew I'd be best for this special boy,
So, thank you Dear Lord, for my precious joy.

All about epilepsy

Myoclonic-Astatic Epilepsy (MAE), or Doose Syndrome, is an epilepsy syndrome of early childhood that is often resistant to medication. For this reason, it can be difficult to treat. MAE is an idiopathic generalized epilepsy, meaning that there is no known cause for the seizures (idiopathic) and the seizures originate from all over the brain (generalized) as opposed to coming from one focal area. Onset of MAE occurs commonly in the first five years of life, with the mean age being three. Statistics show that it usually affects children who have previously developed normally, and boys are twice as likely as girls to develop MAE. In some cases, other family members (immediate or extended) may also have seizures.
Myoclonic-Astatic Epilepsy (MAE) was first described and identified in the late 1960s by Herman Doose as an epilepsy syndrome, hence its original label, Doose Syndrome. The generalized seizure types seen in this syndrome vary, but many of the afflicted children can experience large numbers of seizures daily, part of what makes this condition so difficult to manage. As with most medical disorders, the spectrum of severity seen in MAE ranges from mild to those more severely affected. Children mildly affected by MAE may have their seizures quickly and easily controlled with first-line medications, alone or in combinations. Those children on the more severe end of the MAE spectrum may have difficulty finding an effective medication or treatment. As more is learned about MAE and new treatment options emerge, the outcomes continue to improve for our children. ¨

Wednesday, March 31, 2010

Jan-09-New Drug Approved by FDA

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