Debbie
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Debbie

Bailey had a 25 minute seizure this afternoon and stopped breathing twice. Was rushed to hospital, recovered and sent back to respite.

last month

Tell us about your experience with/connection to Huntingtons Disease

“My 5yr old and my husband both diagnosed in 1999 with HD, 2 years later our child died in our arms in hospital aged 7. Youngest child tested at 5, results came back positive for JHD when he was 7 or 8 and he is now in a wheelchair at 11....”

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Displaying 1 - 10 out of 13 comments
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  • Rob

    Praying for your peace, comfort and joy this holiday season.

    4 weeks ago.

  • jenny

    Hi Deb, just dropping by to say g'day. How's the little man? Have they managed to get the seizures under control? I think of you often and hope that they can stabilize Bailey and make him more comfortable. (((hugs))) jenny

    last month

  • jenny

    Sorry to hear about Bailey, Deb. Poor little guy....I hope they have something up their sleeve to settle him down. Sending you all lots of (((hugs))) via America.....jenny

    last month

  • Debbie

    Susan,

    Bailey had another seizure today (Saturday) and the Neurologist has just rung to talk to me. He is looking at perhaps introducing another drug, I imagine the drug you mentioned might not be given due to the long term sedative effects or the interaction of drugs he is already on. It could also be that it has the same effect as the drugs he is on, I just have to trust that they know what is best. It seems that he will be staying in respite or hospital depending on how he is over the next few days, the Neuro is going in tomorrow (Sunday) to see him again. He thinks he is looking well but the EEG showed lots of seizure activity. I will keep my fingers crossed for him. Thanks for replying.  Debbie

    last month

  • Susan

    Debbie!, I read your post and wonderif they can give your beautiful son IM lorazepam. We use it on adults w/seizure problems. Just a thought. They could teach you to give it. There must be something else you can do. Susan

    last month

  • jenny

    Hi Debbie, Margaret McClusky has been able to see Dominic at last. Here's hoping some common sense will prevail at last! How's things in your camp? Thinking of you, (((hugs))) jenny

    last month

  • jenny

    All looks good Deb, it seems like there is no problem with access now. Welcome again! Wink

    last month

  • Rebecca

    I ment to say welcome to the site!

    last month

  • Rebecca

    Hi Debby my name is rebecca rose to the site, I dont get to come on alot, But I thak GOD for this site and I believe you will also ! My heat is breaking for you ! My x husband passed 5 yrs ago from H D my daughter was diagnosed at 15 with j h d she is 23 and on hospice my grandaughter also tested   positive at age 5 and also on hospice she just turned 6 on the 5 of this month and is progressing fast. So I  will be praying for you !!!!! Your son is very handsom!!

    last month

  • Dina

    Welcome Debbie, It seems you have really had to handle a lot. I hope you find the support you are looking for here on this site. I have to say I just joined maybe about a month ago and I have really found some peace here with everyone.

    last month
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