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(*added media link/LABS)( 14 y.o. IDDM w/worsening neuro symptoms- no diagnosis

Discussion in 'Hospital' started by moontide, Sep 24, 2012.

  1. moontide

    moontide Young Member

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    View attachment ABNORMAL LABS.pdf

    I didn't realize my links to the photos/videos didn't show up with the post- it should be here now! Sorry!!

    I'm at my wit's end trying to find what is wrong with my son. Since my son's diabetes diagnosis (type 1) in 2009 his health has been steadily declining. He was a star football player and now any activity causes pain, fatigue and muscle spasms. Some days he's fine and other days find him hanging onto furniture to cross a room. A few of his pain symptoms started before the diabetes, worsening after he started insulin and really seemed to escalate after a football injury Aug. 2011, first with severe, long duration paraspinal back spasms. The doctors suspected a very mild T-8 compression fracture but his pain level was quite high and more in the lumbar arch area of his back. T-8 was only painful with palpation. He now has graduated from that to leg spasms (clonus?) this April, tachycardia (July) and today his whole face spasming. As a parent I've been SO frustrated watching my son's decline in health for the past 4 years and am getting upset at the very expensive lack of diagnosis. I've posted photos and video at the below link. He has had so many tests that have yielded no answers. I can post them if there is any interest. I have spent SO many hours online learning and trying to find answers, I was glad to find this site, it gives me a glimmer of hope that someone may have the expertise and time or simply feel challenged enough to look into this. I feel my son's doctors simply don't have time so we get referred elsewhere only to get put off for another 3 months, then another...

    He has so many symptoms, I don't know if they are related or if he has more that one thing going on. I don't know if it's something autoimmune or related to the otelixizumab clinical trial he participated in or something totally separate. I'm working on doing a timeline but am hoping the photos and video may offer a starting point.


    Photobucket MoontideDesigns Pictures by MoontideDesigns - Photobucket
     

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    Last edited: Sep 27, 2012

  2. moontide

    moontide Young Member

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    Most recent (10/01/12) Lab results
    calcium, total 9.5 mg/dl [8.6-10.4]
    ca, ionized 1.0 L mmol/l [1.1-1.3]
    magnesium 1.9 mg/dl [1.8-2.4]

    ck 68 L u/l [70-250]
    carnitine, total 34 umol/l [31-78]
    vit d 25-hydrox 37 ng/ml [>=20]


    At least the low ck (hopefully) rules out muscular dystrophy which I was worried about. This was a lean muscular quite athletic child, we went to the fair last week, he couldn't walk for two days after without extreme pain because his leg muscles were so tight and sore. Does the lower ck indicate muscle wasting??? I can post any lab results that may be pertinent upon request if we've had them done. I did post abnormal labs in my first post but corrected the garbled GAD auto antibody (35 u/ml) View attachment ABNORMAL LABS 2.pdf text and will repost here.

    Does a regular ck test differentiate between muscle and heart enzymes? Would it show anything if he wasn't having symptoms at the time or only shortly after he stresses his muscles? Would Stiff Person Syndrome elevate CK?
     

    Last edited: Oct 13, 2012

  3. moontide

    moontide Young Member

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    5-HIAA 3.2 (ref. <8.0 mg/24h)
    Normetanephrine Free Plasma 0.83 (ref. <0.90 nmol/l)
    Metanephrine- Free Plasma 0.24 (ref. <0.50 nmol/l) (non-fasting, drawn sitting upright after sitting appx. 15 minutes in waiting room)
     


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