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Thread: Important meeting with neuro this Friday. Prayers please.

  1. #1
    Distinguished Community Member
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    Oct 2006

    Exclamation Important meeting with neuro this Friday. Prayers please.

    G'day to all our special neuro buddies.

    This Friday we have a special meeting with Grant's neurologist. The meeting is important because I want to propose a slightly different protocol regarding seizure management.

    I have already emailed the neuro with the following


    Hi Grant's neuro,

    I trust that this email finds you well and going full steam ahead with the epilepsy gene project as well as caring for your patients.

    You have the pleasure of seeing Grant next Friday.

    I would like you to consider the possibility of adding an extra drug for major tonic/clonic seizure control. The drug being Midazolam.


    Many years ago when Midazolam came out, Grant was one of the first to try it. When we gave it to him at home, the seizures stopped but he vomited almost continuously for a couple of days. At the time we didn't link the vomiting to Midazolam. Then a few days later we gave him another dose of Midazolam and again he vomited. It was then confirmed by Grant's neurologist that the Midazolam caused the vomiting. Midazolam was therefore never reconsidered as a drug for Grant at home.

    The one drug that stops Grant vomiting is Zofran (Ondansetron), which is always given in hospital with Midazolam whenever Grant has a seizure crisis. Over the years, Grant in hospital has responded well to Midazolam.


    Grant has been on Paraldehyde for many years now. In the early days it worked wonderfully, but we now wonder if it is as effective as it used to be. Grant has been extremely stable for the last 7 months or so. We have needed to give Paraldehyde about 4 times since last time we saw you. But it doesn't seem to kick in as it should as it take Grant days to calm down fully. Sometimes with the Paraldehyde on board, Grant doesn't even go to sleep!


    Ever since we started giving Paraldehyde, the only people allowed to give it are doctors and nurses and Alison and myself. The carers who come to our home have never been allowed to give the medication. Because of this I cannot leave the house when a carer is here. Although Grant goes to the day centre two half days a week, because they cannot give the Paraldehyde, I have to be on call, and cannot be further than 15 minutes from the day centre in case Grant has a major seizure. Grant now weighs 51.4 kilos. Giving Grant rectal Paraldehyde is becoming quite a challenge for one person to administer.


    I would like to sugggest Grant's neuro that we consider Grant having Midazolam plus Zofran at home as a trial run when he has a bad tonic clonic. Alison and I will still use Paraldehyde of course if there was another bad tonic/clonic.

    Zofran is now available as a wafer or tablet and can be purchased in 4 doses for the normal discount and so is affordable.


    Grant may recover quicker with Midazolam than Paraldehyde. The net result for Grant may be better quality of life and less visits to hospital in a crisis. In fact the reason that we have ended up in hospital has been because the Paraldehyde doses have not worked. Adding Midazolam to the mix might resolve these problems.

    The day centre folk can be trained to give Midazolam and Zofran.

    The home carers can be trained to give Midazolam and Zofran.

    Can we discuss the pros and cons of using Midazolam at home when we see you next week?

    Best wishes and Grant looks forward to telling you all his news.

    Paul, on behalf of Grant the champ.

    Ps. Copy to joint medical guardian

    End of email to Grant's neuro


    Grant has been absolutely stable over the last 12 months. Going back to the previous 12 months Grant was admitted to hospital in a crisis about 4 times and each time he ended up in ICU! Although Grant did have an episode of bad seizures in around March of last year, his hospital stay was only 4 days and he was easily managed in the ward :) We now have a very proactive protocol that means that we will get Grant to hospital well before a crisis state at home.

    Because Grant has been so stable the neuro might not want to change the plan. But, and this is important, every time that we have used the Paraldehyde, it quite simply has not kicked in and put Grant to sleep. Given that Grant has 3 ampoules per dose which is one more ampoule than the recommended dose, you really would expect him to go to sleep wouldn't you. After all Paraldehyde is an anaesthetic! We wonder if Grant is slowly developing a Jump to: navigation, search Tachyphylaxis towards Paraldehyde, even though Tachyphylaxis generally comes on quickly.

    Even though Grant has been extremely stable :) over the last year, when he does need the Paraldehyde, it takes him many days to fully recover. He is very jittery for days, which we believe is because the Paraldhyde hasn't put him to sleep.


    It is very exciting isn't it that the carers and the day centre staff can be trained to give Midazolam. Wow talk about exciting eh :) So apart from benefiting Grant, it would benefit me also if the staff and carers could give Midazolam. Ever since Grant was put on Paraldehyde, over 10 years ago now, I have also had to be on call because the day centre staff and the carers have not been allowed to give Paraldehyde.


    I will put the Midazolam case as best as I can to the neuro. I can see him wanting not to change the routine because Grant has been so stable. But I would like to have a trial with the Midazolam to see if it will put Grant to sleep and see if Grant recovers quicker on Midazolam as compared to Paraldehyde.

    Please pray for a positive meeting on Friday.

    Many thanks.

    God bless and seeya,

    Paul, Alison and Grant the champ.
    Grant's story in pictures and music. A must see :)
    Seeya there :)

  2. #2
    Distinguished Community Member Ging's Avatar
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    Mar 2007


    Hello, you have certainly presented a good case, I do hope you can get Grant's Dr. to consider trying this.. Good luck and prayers that he gets a good report and a chance with adding the new medication with the added nausea medication... :) ging

  3. #3
    Distinguished Community Member andromeda31's Avatar
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    Oct 2006


    Hi Paul!

    I really liked how you wrote the email to the dr....I think it was very logical and persuasive. I think it is so nice when you can send stuff to the doctor ahead of time to think about before the appointments versus springing stuff on them and having to have them make a snap decision. I know for us, our relationships with Caitlin's drs seems better now that I have their email addresses and can send questions directly to them. Good luck at fridays appointment!! Hope they decide in favor of it so your respite times can be truly a break! :)

    Lisa O.
    Lisa O: mom to Caitlin (14-CP, VA shunt, seizures), Brandon (12), Tyler (10), Logan (7) babies are all getting so old!!

  4. #4
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    Oct 2006
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    ((((((Paul, Grant & Alison))))))

    Prayers will be with you for your meeting with Grant's neuro.

    Paul, you might be interested in reading the article in this thread from our Epilepsy forum. It's about using Midazolam to stop status seizures, by paramedics injecting it.

    I am so happy to hear that Grant is stable. May it continue to be so!

    Love & Light,

    Mom to Jon, 49, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful Dad.

  5. #5
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    I will be praying! :)

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