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Thread: Restuls of Neuro appointment 28/10/011

  1. #1
    Distinguished Community Member
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    Oct 2006

    Thumbs up Restuls of Neuro appointment 28/10/011

    G'day neuro buddies.

    We arrived early for the appointment. Because of the structure of the hospital, I always need to drop the carer at the entrance (which is up a steep drive) and park the Grantmobile wherever I can find a park. Getting parking presents three possibilities.

    1. Park in the cheap area = about $12.00 for the day. (If you can get it).

    2. Park in the posh area (which is at another hospital's car park; Private Hospital) = $12.00 an hour = crumbs!

    3. Drive up and down the streets looking for a free spot to park (two-hour hour limit).

    It was a good start for the day, as I found a spot to park for free


    We have talked about this a few times previously. The neurologist is quite happy for us to decide whether or not we want to follow up with the ortho/surgeon appointment in November. We will follow up and have the appointment. When Grant was in the hospital a few months ago, the swelling was looked at by the ortho team. An offer to do a needle biopsy was made, but the joint medical guardian wasn't happy with the idea, as it would cause Grant more stress. So we decided to hold back on the biopsy. The joint medical guardian representative will attend the ortho meeting in November = that's cool


    It seems that the additional suctioning that we need to do is probably related to Grant's scoliosis worsening. A few years back we had an ortho doc look at the scoliosis. He said a strange thing = There is good news and bad news. The bad news was that absolutely nothing could be done about the scoliosis. Putting the rods in was out of the question for many correct reasons. The bad news, and this sounds strange, was that the doc felt that Grant's scoliosis simply couldn't get worse, as it was at 90 degrees horizontal at the base. Well unfortunately Grant's scoliosis has got worse. But it is very strange, as there are some days when we don't have to do much suctioning at all. And then there are other days when we have to do a lot of suctioning, which would indicate that some of the issues are purely neurological.


    The neuro was very much in his element here . He explained quite clearly that although Grant's liver function is not normal, it is normal for Grant, and in fact, Grant's liver is okay. The Dilantin simply causes the blood results to look a bit odd. The neuro did not want us to get worried at all. He said that we could try extra vitamins if we wanted to, but I will not do that. He said that sometimes he would get a phone call from casualty saying that one of his patients turned up with a very bad liver function test. He would tell the doctor that all was fine; the patient has had this liver blood result the same for about 10 years! We are quite happy with the neuro's explanation of Grant's liver function.


    The neuro, the carer, the joint medical guardian representative, were all very excited to see that Grant has point on weight Grant looks absolutely fantastic, unreally so. He is flourishing. The joint medical guardian representative (she is not the actual joint medical guardian) was actually the first person I spoke to way back in December. She was at the meeting when Grant's old hospital chucked him out of the hospital. She saw Grant at that time, and Grant looked terrible. She was thrilled to see Grant thriving :)


    The PEG outreach nurse has corresponded with the neuro since last Tuesday when she came out and looked at the Micky button. The neuro is quite happy stepping back and allowing the gastro team to address the matter. We do have an appointment with the gastro team in February = crickey! The nurse also emailed the gastro team requesting an earlier appointment. At the moment the Micky button stoma area is fine. We would like a scope done, but there is nothing urgent about that happening.


    Grant is absolutely and totally rock solid for him. We are getting back into record territoriy . We are seeing excessive eye movements horizontally sometimes, but the nasty tonic/clonic seizures needing drastic measures (Paraldehyde) are just not there. Of course, everyone is absolutely thrilled :)


    I asked the neuro if we could get a script for Frisium (Clobozam) via the hospital pharmacy. The drug has cost $22 a month, and although that is not a small fortune, it still does add up. I asked the neuro if he could write a script for the hospital pharmacy to see if we could get the Frisium cheaper. He said that Frisium is one of the drugs that although there have been many efforts to get the drug on the concession government list, it has never been accepted. He wrote the script and on the way out of the hospital I gave the script to the pharmacy person. She very kindly provided the medication, which will cost us $5.55 a month, which is a big difference compared to $22 a month.


    On the way out of the hospital, Grant donated some blood to pathology. The nurses were delightful. I told them not to be too concerned if they could get any blood as there had been times when Grant needed a anaesthetist to draw blood, to which one of the nurses said they never allowed doctors to beat them. The successfully got blood first try via Grant's hand = well done indeed!

    Today (Saturday) Grant's neuro sent the following email.


    Grant's blood tests form Friday are very reassuring. Not surprisingly, if someone looks well they usually are well.

    Grant's neuro


    Grant is flourishing and a picture of health. He does need suctioning, and that is something we will need to manage. There are small eye flutter seizures, but that is about all we are seeing. Praise the Lord. We see the neuro again in March.

    Hugs of course to all your precious kiddos.

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

  2. #2
    Distinguished Community Member
    Join Date
    May 2008


    Paul that's great to hear. Sounds like things are going very well for Grant. I've been reading yoru updates along the way and it must be nice to get to the neuro. and ahve someone really get it all and put everything together for you. I've found our newest neuro is like that...he will listen and help us figure out everthing even if it isn't his expertise he. He's the only one who listened to me and tested Kathleen for Celiac disease. Don't you just LOVE someone who can get blood on the first stick! I always praise them heavly!
    Mary Grace

  3. #3
    Distinguished Community Member
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    Oct 2006
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    Hooray!!! Well done Grant, neuro and of course Paul! Fab results all around, even the parking! :)
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog:

  4. #4


    That's all wonderful news Paul. Relax and enjoy the blessings that are yours. God is good.
    mom to four boys who keep things interesting...

  5. #5
    Distinguished Community Member andromeda31's Avatar
    Join Date
    Oct 2006



    I am so glad the appointment went well! That is great news about Grant being so stable...may it last for a good long time! :)

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

  6. #6


    Sounds great Paul. All very positive
    Yvonne x

  7. #7
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    Oct 2006
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    ((((((Paul Grant & Alison))))))

    What fantastic news!

    I'll look forward to the results of the ortho meeting this month, regarding the thigh swelling.

    In comparing the price of your parking to the price of the Frisium to my experiences in the U.S.:

    Hospital parking: $5/day

    Depakene: $341/month

    I paid for the brand name, because Medicaid wouldn't, for Michael, in the 1980's ... that's how old this amount is.

    I can't even imagine the price now. But I'm sure that any of Jon's meds would cost a whole lot more than $22/month.

    Also I noted this curiosity: For you, a day of parking costs half the price of a month of meds. It just seems turned around to me. :)

    Prayers always that Grant will continue to thrive and be seizure-free. He sure is a lucky young man to have you and Alison as his mom and dad.

    Love & Light,


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