Michael's Journey: November 2010

Friday, November 12, 2010

Strides

18 months seizure free!!! Yesterday we had our 6 month checkup. Michael bravely gave blood as usual and didn't even cry!
Later, we met with our Dietician, PA and our Epileptologist, Dr. Koh. We successfully weaned Keppra last week which we are very thankful for as it was causing many unwanted side effects. The doctors are very impressed with Michael's progress and think at this point, he has about an 80% chance of outgrowing the epilepsy. However, we still have one more drug to wean as well as the diet. They suggested we wait for another year before attempting that. We will go for another EEG in 6 months.
So right now, we are going to sit back, relax and count our blessings.
We would like to thank our friends, family, Msgr. Yeazal, Sister Rose, Father John, and Father Ahern and our Angels for all of their prayers, blessings, gifts, love and support. We could not have gotten this far without you!
November is Epilepsy Awareness month, so don't forget to showing your support by wearing purple! God Bless~

Wednesday, November 3, 2010

End of Summer

I haven't posted for awhile since we have had a very busy and fun summer. Michael is doing well and we are almost done with our Keppra wean. We will go back in Dec. for a checkup and discuss weaning the Banzel. Michael is coming around every day and it is so good to see our little boy! He is in Karate now and loving every minute! Grandma was just here visting and we had a blast. We count our blessings every day!

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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. ¨