Background Color:
 
Background Pattern:
Reset
Community Forums
Seizures and Sinemet?
Last Post 29 Aug 2009 12:17 AM by Carol Sullivan. 18 Replies.
Printer Friendly
  •  
  •  
  •  
  •  
  •  
Sort:
PrevPrev NextNext
You are not authorized to post a reply.
Author Messages
Carol SullivanUser is Offline
New Member
New Member


--
29 Aug 2009 12:17 AM
    Hi! New here. My son is 12 yrs old, can't walk, talk or eat. We believe he is traped in his body. I've been trying to convince my son's Doctor to put him onSinemet for over a year. Thomas has these "electrical charges" 5o% of his sleeping time and the Doctor says that we can't start Sinemet until we get them under control. She says that the Sinemet will make them worse. Have you found this to be true? I'm tired of waiting! I want my son back! Carol
    Retta BeeryUser is Offline
    Basic Member
    Basic Member
    Posts:112


    --
    29 Aug 2009 06:04 PM
    <P>Hi Carol,</P> <P>I'm so sorry to hear about your son.&nbsp; How long has he had the "electrical charges"?&nbsp;Has he ever been able to walk, talk or eat?&nbsp; I'm asking because often times the onset of t
    Carol SullivanUser is Offline
    New Member
    New Member


    --
    30 Aug 2009 03:47 AM
    <P>Hi!</P> <P>&nbsp;</P> <P>We are not sure how long&nbsp;Thomas has had the charges.&nbsp; His day time EEG's have always been messy, but they figured it was because he is in constant motion.&nbsp; He
    Carol SullivanUser is Offline
    New Member
    New Member


    --
    30 Aug 2009 03:53 AM
    <P>One more thing....</P> <P>&nbsp;</P> <P>The doctors believe, with all the test they have done, that they have proved that Thomas doesn't have CP.&nbsp; </P> <P>&nbsp;</P> <P>So
    Retta BeeryUser is Offline
    Basic Member
    Basic Member
    Posts:112


    --
    01 Sep 2009 05:21 AM
    <P>Hi Carol,</P> <P>I'm curious why the doctor hasn't tried Thomas on Sinemet yet.&nbsp; I understand his desire to get his "electrical charges" under control, but it doesn't sound like they know how to do that.&n
    Carol SullivanUser is Offline
    New Member
    New Member


    --
    01 Sep 2009 04:01 PM
    <P>Hi!</P> <P>&nbsp;</P> <P>They consider any activity a seizure.&nbsp;&nbsp;When I asked about trying the med they told me he was tested and it was negative.&nbsp; I said I've never tried sinemet befor
    Carol SullivanUser is Offline
    New Member
    New Member


    --
    01 Sep 2009 06:52 PM
    <P>hi,</P> <P>&nbsp;</P> <P>I just talked to Thomas' doctors nurse.&nbsp; Ugh!</P> <P>&nbsp;</P> <P>She says that sinemet will not do anything to his "charges".&nbsp;
    Iain PrattUser is Offline
    New Member
    New Member


    --
    01 Sep 2009 10:59 PM
    <P><EM>Hi there,</EM></P> <P><EM></EM>&nbsp;</P> <P><EM>When I was 9 years old or maybe 10, I had what could have been seizures because my head turned to one side and I was permanently
    Retta BeeryUser is Offline
    Basic Member
    Basic Member
    Posts:112


    --
    03 Sep 2009 07:56 PM
    <P>Hi Carol,</P> <P>I just read your posting as well as Iain's posting.&nbsp; You are Thomas's biggest advocate, you know him better than anyone else, you are the one who is watching and listening to his needs.&nbsp; If you
    Carol SullivanUser is Offline
    New Member
    New Member


    --
    10 Oct 2009 01:04 AM
    <P>We get to try sinemet!&nbsp;&nbsp;&nbsp; (Against her ,Doctors,&nbsp;better judgment.) Yeah!</P> <P>&nbsp;</P> <P>We'll let you know how it goes.</P> <P>&nbsp;</P> <P&g
    Retta BeeryUser is Offline
    Basic Member
    Basic Member
    Posts:112


    --
    11 Oct 2009 08:23 PM
    <P>Hi Carol,</P> <P>It's so good to hear from you!&nbsp; I'll be praying for Thomas as you start him on the Sinemet, that it will be so clear to you if he is responding to the medication.&nbsp; I'm praying the doctor is sta
    Carol SullivanUser is Offline
    New Member
    New Member


    --
    12 Oct 2009 04:48 PM
    <P>We may be starting him on an 1/8 of a tablet, if possible, once a day for a week, then I'm not sure where we go....&nbsp; </P> <P>&nbsp;</P> <P>My husband and I are very excited, but very scared to hope for
    Retta BeeryUser is Offline
    Basic Member
    Basic Member
    Posts:112


    --
    20 Oct 2009 08:10 PM
    <P>Hi Carol,</P> <P>I wanted too check in and ask how everything is going?</P> <P>&nbsp;</P> <P>Praying for you and your family,</P> <P>Retta</P>
    Carol SullivanUser is Offline
    New Member
    New Member


    --
    23 Oct 2009 12:28 AM
    <P>We start it on Monday (10/26).</P> <P>&nbsp;</P> <P>What should we be watching for?</P> <P>Thanks!</P> <P>&nbsp;</P> <P>Carol</P>
    Retta BeeryUser is Offline
    Basic Member
    Basic Member
    Posts:112


    --
    28 Oct 2009 05:58 PM
    <P>Hi Carol,</P> <P>How is it going so far?&nbsp; Some of the things you should be looking for are little improvements, ability to keep better focus, improved muscle tone, etc.&nbsp; What dosage did they start him on?&n
    Carol SullivanUser is Offline
    New Member
    New Member


    --
    30 Oct 2009 12:24 AM
    <P>Hi Retta,</P> <P>&nbsp;</P> <P>So far so good.&nbsp; We started him on 1/8 of 10/100mg tab, once a day.&nbsp; We did noticed that he was more focused.&nbsp; He would look at us walking around while h
    Retta BeeryUser is Offline
    Basic Member
    Basic Member
    Posts:112


    --
    30 Oct 2009 06:14 PM
    <P>Hi Carol,</P> <P>I am praising God for those things that He is showing you, no matter how small, they are significant.&nbsp; He is starting on such a small dosage that I'm guessing your doctor is wanting to be completely saf
    Carol SullivanUser is Offline
    New Member
    New Member


    --
    22 Nov 2009 07:09 PM
    <P>Hi Retta,</P> <P>&nbsp;</P> <P>I have a couple more questions for you.&nbsp; Thomas is at 1/2 pill (10/100)&nbsp;2x a day.&nbsp; 6:30a.m. and 7:30 p.m.&nbsp; I am concerned that we are not giving
    Retta BeeryUser is Offline
    Basic Member
    Basic Member
    Posts:112


    --
    25 Nov 2009 04:42 AM
    <P>Hi Carol,</P> <P>It does seem odd that his doses are so far apart.&nbsp; I would think she would want to space the 2 doses 4-5 hours apart from each other and then add in a third.&nbsp; Our kids were up to 1/2 pill 3 tim
    You are not authorized to post a reply.