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Sinemate
Last Post 07 Jul 2014 05:35 PM by Retta Beery. 3 Replies.
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Logan'sMomUser is Offline
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16 Dec 2011 12:42 AM
    I am curious if the side effects of this medication are as bad as I have read online. My son was diagnosed with CP about a year ago, but recently the Neurologist feels that it may be DRD. I am praying that he is correct. We did the spinal tap, another MRI, and genetic testing today. We will not have the results for a few weeks, but he is starting Sinemet in the meantime and I am terrified. Does anyone have any advice on how to give a pill to a 2 year old? Can I crush it? Also, I want to know what kind of side effects you have seen. I know the benefits outweigh the side effects, but it is still scary giving this to a toddler.

    Thanks,

    Logan's Mom
    Retta BeeryUser is Offline
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    16 Dec 2011 12:56 AM
    Hello,

    Thank you for leaving a message! I'm so sorry to hear about Logan but very happy that it sounds like he's on the right path to find a diagnosis. The dosing of the Sinemet is crucial to low to no side effects. If you start him on too much, he could have extra movements in his hands and body, tremors, etc. We started Alexis and Noah on a quarter of a pill once a day (after Alexis initially responded the first 2 days on 3 quarter pill doses). Day 3 of Alexis's 3 quarter pill doses a day, her arms and hands had extra movements/tremors. Once we cut her down, she was fine. We then gradually increased her by a quarter of a pill every 2 weeks. She and Noah have had no side effects since.

    A quarter or a half of a pill is very easy to swallow so I don't think he should have a problem. Please let me know how it goes.

    Sincerely,

    Retta Beery
    NavdeepUser is Offline
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    25 Jun 2014 04:59 PM
    I have 23 years brother. He was diagonsed with cerebral palsy when he was 2 years old. 3 years ago we took him to new york peresbetarian hospital. They said he might have dopa. But they didnt conducted any genetic test. Now last week we took him to rehab cente Boston, they didnt did any test but said he dont have dopa. One of Dr also said they just give medicine of dopa to children. We are very confused. Can anyone please suggest from where we can get genetic test done?
    Retta BeeryUser is Offline
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    07 Jul 2014 05:35 PM
    There are quite a few labs that are now doing full exome sequencing, if that's what you are thinking of doing. Rare Genomics works with labs around the world and their website is: www.raregenomics.org. Baylor College of Medicine, Emory University, Washington University in St. Louis, and many other universities are also doing full exome sequencing. If you google "full exome sequencing" or ask your neurologist in Boston where to go, I'm sure they can guide you. We'll be praying for your brother.
    Retta
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