Tuesday, July 24, 2012

Not having the best two days, it seems we may need to up his medicines, though we're trying to figure out which ones, maybe all of them. The past two nights Ollie has been having strange and painful movements in his arms, whether they are seizures or muscle spasms we don't know yet. But we know they are causing him quite a bit of discomfort. His neurologist thinks they sound like seizures and has told us to double his dose of Keppra at night and schedule a sleep EEG. It's been taking us hours to get him to sleep at night. 2 hours last night, over 4 hours on Sunday night. He can be simply exhausted, he'll fall asleep, but within a minute or two the painful jerky motion in his arms wakes him up. We haven't been able to leave the house because he's been really uncomfortable in general. All he's comfortable enough to do right now is sit in the glider with one of us and read or watch TV.




8 comments:

  1. Your blog is very touching!! What a beautiful family you have. As I read a lot of your posts I've related to a lot of the same feelings. Mostly, the way you found out about leukodystrophy and researching it on the internet--just devastating :( Hugs & love sent your way from Arizona :)

    Denise (Ryder's Mama)

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  2. Katie is he on any meds for muscle spasms? Valium is good stuff and works well in the hospital. Not sure he needs that just thought I'd ask. Praying and thinking of you guys xoxo

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  3. Praying for comfort for your beautiful little boy. You both are amazing parents!

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  4. As I read this journal entry, my hair on my arms are standing straight up and my eyes are blinded by my tears. I am praying everyday for you and your family, Katie. God Bless. Ollie is very lucky to have a loving family.

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  5. Katie,Chris and Ollie:
    Prayers going out for all of you.if you need anything give me a call... Love u all and God Bless
    ~ Hugs Allie

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  6. Col, he takes clonazapam as a secure drug for the seizures and spasms, but it seems that it's becoming less of a "rescue drug" and more of a daily drug. It works okay, it calms him down, but he's still been pretty miserable, and really tough getting him to sleep.

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  7. We asked about Valium but his neurologist said it works in the same way as clonazapam, but if the clonazapam doesn't start to work better for him we may insist on at least trying it. The few MLD famlies we keep I touch with use it with their children.

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