11.12.2013

Simon update - a visit with a neurologist

A few weeks ago, we got a letter from the local children's hospital that stated that Simon had an appointment with a neurologist. This seemed out of the blue because we haven't had an appointment for Simon in ages at the hospital. As soon as we saw the neurologist, I asked him when he received the referral (which I knew came from Simon's developmental pediatrician). He looked down at the chart and said August. Pablo asked him of what year. He looks down and said 'of last year' with a puzzled tone to his voice. I asked if that is a normal wait time - 14 months. He said the normal wait time is 6-9 months and that the referral must have gotten lost in the shuffle...

Trying to stay calm despite being thoroughly annoyed with this news, the neurologist asked us a bunch of questions about Simon like when did he start walking, talking and when was he toilet trained. He also asked how Simon manages stairs which we said is still a challenge for him since he still has to put both feet on each step. He often goes down the stairs on his bum. He asked if Simon can ride a bike with training wheels. We said he can't - he can't get the continuous motion of moving his feet and keeping his feet on the pedals. He brought Simon over to a set of stairs and observed him going up and down them. He asked Simon to sit on the ground and then asked him to get up on his feet. He asked Simon to stand on one foot - which he has difficulty doing. He was going to ask Simon to jump on one foot but since he couldn't stand on one foot...We told the neurologist that Simon only learned to jump in the last 6-9 months - where he can actually get both feet off the ground at the same time.

The neurologist concluded that Simon definitely has issues with his muscles. He doesn't think it is a coordination problem because Simon can go from sitting to standing quite easily. Now he would like to determine if Simon's issues are due to an issue in the brain or just an issue with the muscles themselves. He wanted to start with testing the muscles themselves since testing the brain means an MRI which they will have to put Simon under and this is a last resort. We were sent off to get blood work done to check the muscle enzyme levels. From there, Simon will undergo another test where they put small acupuncture like needles in his muscles and he will be asked to move those muscles and they will test the muscle activity. It's a good thing Simon doesn't mind needles - he has never once cried for a needle. If these two tests are inconclusive, an MRI would be next. Pablo's medical history is also being taken into consideration due to the amount of various tumours he has had.

The next muscle test will probably be in the next few weeks....

16 comments:

  1. Has anyone suggested Asperger's? Have you seen if he has any of the other typical Asp traits?

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    1. It seems to me that Simon's case has absolutely nothing to do with this type of condition...

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    2. But I don't know Simon in person, I just FEEL he has nothing to do with AS...

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    3. No one has suggested much of anything so far...the only thing that was 'mentioned' was 'developmental coordination disorder' but that was over 1.5 yrs ago. I'm hoping this next round of specialists might be able to come up with something. Fingers crossed. Once we have a diagnosis, we might be better equipped to help Simon work on what is wrong.

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  2. What an annoying situation!
    Fingers crossed for the results of further tests! Biiiiiiiiig hug for Simon!
    Take care and keep us updated

    My best thoughts
    :-*
    Kasia

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    1. We're sooo getting used to dealing with annoying medical situations. It's quite sad actually. Makes it hard to stay positive. And I just hugged Simon for you. He's my little cuddle bug. I will for sure keep y'all updated. Big hugs to you Kasia! xxoo

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  3. How angry you must have been to hear about these 14 months, but I admire how you always keep a positive attitude. I hope the results are good. I bet this is very stressful but you must feel some relief knowing that something is being done.
    Fingers crossed!

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    1. Pissed off is more like it. Maybe I'm just running out of patience with our medical system lately... It would be so great to one day have an answer to why Simon is different. It gets really hard to explain to people when we can't name his issues.
      Thanks Lor!

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  4. @Lor - Asp often manifests physically - motor/muscle control. Everything she has described, was my child's experience too - this is why I asked.

    And, a Asp diagnosis is not the end of the world. My son has ridiculous intelligence & with therapy - has successfully worked on his motor issues.

    Wishing much luck to the family, & am hoping they get some answers! They obviously share a lot of love.

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    1. Over a year ago, I might have thought that Simon could have Asp but due to the huge strides he's made socially, I am leaning more towards a solely physical diagnosis. We shall see!

      Thanks for all your support Lili!!!

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  5. Hi Julia - Simon sounds so much like my son. I highly suspect he has dyspraxia though I have been having a hard time getting a diagnoses too. It is similar to DCD, but has more global symptoms. We haven't pushed for more testing because he is already receiving great supports in school. You should check out this website & FB page - http://www.dyspraxiausa.org

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    1. Thanks for the link! I'll have to check it out. I think Simon needs more support which is why I am looking forward to a possible diagnosis.

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  6. Thoughts are with you! It sounds like at the very least there is some direction and that's great!

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    1. Thanks! It's a start but after two years of trying to get answers, I'm hoping for something, anything! :)

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  7. Hi hon, I am praying for you and your family. Hugs....

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