Results 1 to 20 of 20

Thread: chlorohydrate????.....help

  1. #1
    Senior Member Monica Green's Avatar
    Join Date
    July 24, 2004
    Location
    Keller, Texas
    Posts
    477

    chlorohydrate????.....help

    It has been forever since I have posted anything on here. I do come on often and stay up to date with what is going on with everyone.
    I have a question about chlorohydrate.....
    Have any of you taken this?
    How did it work for your kiddos?
    How long were they on it?
    Any side effects?

    Will update when I get a chance. Just really wanted to know what your experiences have been with this drug.

    Thanks,
    Monica
    Mom to the "CAMERONator"
    (Hunter syndrome, 13yrs.old)

  2. #2
    Senior Member Leslie's Avatar
    Join Date
    October 6, 2004
    Location
    North Carolina
    Posts
    9,225

    Re: chlorohydrate????.....help

    Hi Monica...I'm glad to see you on here! I'll tell Kris to get on here and read this...I don't know a lot about Chloral Hydrate, but I know Kraig had a lot of issues when they tried it with him and they cannot use it with him anymore. I hope Cameron is doing well...hugs for you all!
    Leslie
    "Faith is deliberate confidence in the character of God
    whose ways you may not understand at the time."

    ~Oswald Chambers

  3. #3
    Forum Committee - Moderator PattyT's Avatar
    Join Date
    February 26, 2004
    Location
    Baltimore, Maryland
    Posts
    4,833

    Re: chlorohydrate????.....help

    The doctor put Jesse on his after he was first diagnosed for sleep. He was 6 yrs old then. The first night at a normal dose?? (I can't remember what it was, too long ago, LOL!) He had convulsions, Scared the crap out me back then. So we tried 1/2 the dose the next night, and he still had his eyes rolling back into his had. So we canned it altogether.
    God never gives me more than I can handle, though at times I wish the load was lighter :-)
    Love to you all!


    Patty and Jesse
    MPS III A


    http://www.caringbridge.org/md/myjesse < click here for Jesse's website

  4. #4
    Retired Staff - Forum Advisor Priscilla Raftery's Avatar
    Join Date
    February 23, 2004
    Location
    Cape Cod
    Posts
    8,921

    Re: chlorohydrate????.....help

    Joey's doctor said this was NEVER to be used on a regular or long-term basis. He said it would be ok to take before an airplane trip, or an EEg or some event that the child may need to be calmed. However, he said it is like drinking alcohol ... not a good thing.
    Priscilla
    Mom to JOSEPH FRANCIS RAFTERY MPS IIIB
    October 22, 1988 ~ January 21, 2010
    Good Night Sweet Prince; and may flights of angels sing thee to thy rest



  5. #5
    Senior Member
    Join Date
    March 22, 2004
    Location
    Belleville, Illinois
    Posts
    3,255

    Re: chlorohydrate????.....help

    Aaron only had it when he was very small before an MRI. It no longer works on him so we use something else. The dosge goes by weight and I dont think its very tastey.
    Trisha
    Mother To 9 Year Old Aaron, Transplanted for Hurlers 03' and 4 Year Old Makayla

    http://www.caringbridge.org/il/aaronathy

  6. #6
    Senior Member Momtoprettygirl's Avatar
    Join Date
    January 1, 2006
    Location
    Hanover, Ontario,Canada
    Posts
    302

    Re: chlorohydrate????.....help

    Emma had chlorohydrate once before a sedated hearing test. She kept vomitting it up so they kept repeating the dose until she finally kept it down. She slept for hours...10 or 12 straight. It scared the crap out of us, and we had her sleep with us so we could keep an eye on her. The next day she had trouble walking and was very very clumsy and lethargic...almost like a drunk person!! She was like that for a couple of days...Never again did she receive it!!
    BECKY, VERY PROUD MOMMY TO :
    EMMA-LYNN AKA PRETTYGIRL MPS1- 6 YEARS OLD BMT 09/29/05 5 years ago
    BAILEY JOSEPH - 12 YEARS OLD The BEST big brother and son in the world!!

  7. #7
    Senior Member THERESE's Avatar
    Join Date
    October 2, 2006
    Location
    MORRIS IL
    Posts
    3,375

    Re: chlorohydrate????.....help

    When my oldest Sara got it for her MRI's, (after 3 different trips to the hospital for the test ) trying to get her sleep, she was vibrating, and bouncing and running like they gave her a shot of Red Bull , we had to try something else..she never had it again after that, We got to the point where they gave her the highest dosage possible and it would not put the poor girl down ..Good luck
    THERESE

    BRYCE 21 YRS UNAFFECTED CARING OLDER BROTHER
    SARA 13 YRS MPS III A..7-7-1994~10-15-2007
    DANIELLE 12 YRS MPS III A

    When someone you love becomes a memory, the memory becomes a treasure
    God answers knee mail

    It's hard to fake a smile when your heart can barely breathe

  8. #8
    Senior Member Laurie's Avatar
    Join Date
    May 31, 2005
    Location
    Corpus Christi, TX
    Posts
    1,946

    Re: chlorohydrate????.....help

    I went to a seminar on MPS at Texas Children's in Houston a few years back. Dr. Glass spoke and said that MPS children should never have Chloralhydrate! Just a few months prior while at Duke having a mri, they gave it to Clay. At first it didn't work so they gave him more and it was the absolute worst day. He wouldn't wake up, everytime I would sit him up, he would throw up. After several hours, they sent us up to the transplant clinic and tried to bring him out of it and he still wouldn't wake. The clinic was closing and they sent me back to the hotel with an out of it child. I decided to let him sleep it off and he woke at 2am and he was thirsty! He continued to throw-up til around 9am.

    Monica, I wouldn't let them give it to Clay EVER again. Why do they want to use this???? Just one suggestion, have you doc call Dr. Glass at Texas Children's in Houston. Many prayers.
    Laurie
    Mom to Clay (5-22-00) dx with MPS II and Jack (5-4-97) unaffected

  9. #9
    Senior Member ChrisMPS2's Avatar
    Join Date
    February 25, 2004
    Location
    Ohio
    Posts
    7,098

    Re: chlorohydrate????.....help

    William had it when he had his first echocardiogram. The heart Doctor said sometimes it works and sometimes it makes the kids more hyper. William fell asleep and woke up just as the test was ending. It went very well with no side effects. I wouldn't use it in a setting where there aren't real medical people around in case there are airway issues if you have airway problems.
    Chris

    William severe MPSII age 23
    Kat age 19

  10. #10
    Forum Committee - Moderator louise lewis's Avatar
    Join Date
    March 28, 2004
    Location
    South Wales, England, UK
    Posts
    4,578

    Re: chlorohydrate????.....help

    Georgia was prescribed this many year ago, for sleep problems, but like other have already said, I didn't like the side effects so never used it again
    Louise
    Mum to Georgia (16 yrs, 11.7.95 - 19.2.2012, MPS IIIA) and Christopher
    Fly high sweet Georgie Pie

    Georgia’s webpage

  11. #11

    Re: chlorohydrate????.....help

    The only experience we have was when they used chlorohydrate to put Lucas down prior to his MRI and ABR when he was 4. I remembered it took a long time for him to come out of it.
    STACEY M~~
    MOM TO LUCAS ~ 17 Sanfilippo MPS III -B
    MARIAH ~ 23 CHELSEY ~ 19 HAILEE ~18
    WIFE TO LEW MiMi to Serenity
    http://www.caringbridge.org/visit/hopeforlucas

  12. #12
    Forum Committee - Moderator Robin's Avatar
    Join Date
    October 4, 2004
    Location
    Upstate NY
    Posts
    4,491

    Re: chlorohydrate????.....help

    We were told at the time of diagnosis that that was a drug to avoid. If Cameron has any breathing issues, I wouldn't use any kind of sedative, especially outside of the hospital. Logan literally can't breathe independently if he is fully sedated, and even a smaller dose would probably cause him a lot of problems.
    Robin
    Mom to Avery, 13 yrs
    Logan, 10 yrs, MPS II
    and Kara, 8 years

  13. #13
    Senior Member
    Join Date
    July 8, 2006
    Location
    Vancouver, BC, Canada
    Posts
    1,185

    Re: chlorohydrate????.....help

    Quote Originally Posted by Robin
    We were told at the time of diagnosis that that was a drug to avoid.
    Robin, do you know why? This is what they used on Trey for his ABR years ago and then again in Oct for his EMG studies. I don't like how Trey comes off it. It's like he's drunk. He wants to walk, without help, but will fall without help. He will not reason with me. I basically have to grab him, against his will, to make sure he doesn't fall. Otherwise it does what it's supposed to...

    Deb
    Mama to Trey (03/04), Avery (11/05), and Sadie (10/07)
    http://www.treypurcell.com

  14. #14
    Senior Member Monica Green's Avatar
    Join Date
    July 24, 2004
    Location
    Keller, Texas
    Posts
    477

    Re: chlorohydrate????.....help and now codeine

    thank you to everyone.
    Well,
    we have the chlorolhydrate out of our system. But, Cameron was still screaming even after we came home last Friday. It is now Tuesday and we are still not back at school. Since being home we had to take Cameron down to the minor E.R. on Sunday. He would not stop screaming. After a x-ray of his abdomen it showed he was FOS (full of s***) literally. Got some prunes and castoria and are still having some issues but working things out.
    Yesterday, we had to take him to the dentist because we knew Cameron was still having some issues with this. After a quick exam our dentist let us know that the 2 molars that are coming in are still trying to break through tissue and a canine tooth is still trying to break through for the first time. So, for pain he was prescribed tylenol with codeine. We gave him 1tsp last night and had another sleepless night.
    I am assuming this medicine has adverse affects on our kids too?
    I am so tired of this trial and error crap. I know doctors don't know much about our kiddos. That is why we have each other. I think if we all let each other know what works and doesn't work at least we will have in the back of our minds what we should try and things we should stay away from.
    Any experience with codeine?????
    Monica
    Mom to the "CAMERONator"
    (Hunter syndrome, 13yrs.old)

  15. #15
    Retired Staff - Forum Advisor Sharon Cochenour's Avatar
    Join Date
    February 23, 2004
    Location
    Clarksburg, Ohio
    Posts
    8,598

    Re: chlorohydrate????.....help

    Andrew has never taken Cholalhydrate before, but he had Tylenol with codiene a couple of monthes ago when he fell and broke his wrist. It put him in hyper-speed and he won't sleep. I stopped giving it too him and went back to giving him Motrin.
    Sharon
    Mother to Andrew 12 yrs old with severe Hunters (MPS II), Natural History Study. Recieving ERT at home.
    Patrick 10 yrs old (not a carrier)

  16. #16
    Retired Staff - Forum Advisor Priscilla Raftery's Avatar
    Join Date
    February 23, 2004
    Location
    Cape Cod
    Posts
    8,921

    Re: chlorohydrate????.....help

    tylenol with codein always worked as it should for joey (after dental work, stitches, for example, to get him to sleep/relax) but it is not to be used long-term.

    seroquel and trazodone, along with melatonin, work very well to keep joey asleep most nights.
    have you tied benadryl and tylenol? this combination works well together too...
    Priscilla
    Mom to JOSEPH FRANCIS RAFTERY MPS IIIB
    October 22, 1988 ~ January 21, 2010
    Good Night Sweet Prince; and may flights of angels sing thee to thy rest



  17. #17
    Senior Member Monica Green's Avatar
    Join Date
    July 24, 2004
    Location
    Keller, Texas
    Posts
    477

    Re: chlorohydrate????.....help

    Benadryl is also a no go for Mr. Cameron.
    Monica
    Mom to the "CAMERONator"
    (Hunter syndrome, 13yrs.old)

  18. #18
    Senior Member ChrisMPS2's Avatar
    Join Date
    February 25, 2004
    Location
    Ohio
    Posts
    7,098

    Re: chlorohydrate????.....help

    We have had good luck with Aleve.
    Chris

    William severe MPSII age 23
    Kat age 19

  19. #19

    Re: chlorohydrate????.....help

    At Duke they tried it before Tyler's EEG, he laughed in the face of it! But crashed several hours later. However after research I don't think it should be given to MPS kids because of respiratory issues (thought I read that somewhere).
    Donna Kay
    Mom to Matt, 12
    Tyler, 4 MPS III A
    Time 4 Tyler


  20. #20
    Retired Staff - Forum Advisor Paulina Jump's Avatar
    Join Date
    February 22, 2004
    Location
    SPARTA, KENTUCKY
    Posts
    13,176

    Re: chlorohydrate????.....help

    Andrew has always had the opposite affects of medicines. We were also told to avoid cholorohydrate. that they can find something to work for Cameron.
    Many hugs and prayers,
    Paulina

    Mom to ^^ Superman Andrew^^ MPS III B 10/09/1997-05/19/2009 G-tube, VP shunt and Alex 12 and our twin angels Christian & Cody 12/07/1990
    Visit ANDREW'S WORLD

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •