9 yr old niece with seizures...MS family link?

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9 yr old niece with seizures...MS family link?

Postby cam » Tue Jun 10, 2014 9:57 pm

I have MS, but haven't yet told my family, just needing time and figuring out how to best do it. However just recently my 9 year old niece has had a number of seizures - "out of the blue". Is aware of them coming on and during - seems mainly to affect her right side - leg/arm. Recent blood and CT scans haven't turned anything up, awaiting EEG results and seeing a children's neurologist. Could there be a connection? From what I could find, seizures are not common in MS, but if her neuro would benefit in knowing there is a family member with MS - I will definitely tell them. I just was wondering if anyone has any more info or just some good advice. I appreciate any tid-bits you could send my way.
Thanks!
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Re: 9 yr old niece with seizures...MS family link?

Postby lyndacarol » Wed Jun 11, 2014 10:18 am

cam wrote:I have MS, but haven't yet told my family, just needing time and figuring out how to best do it. However just recently my 9 year old niece has had a number of seizures - "out of the blue". Is aware of them coming on and during - seems mainly to affect her right side - leg/arm. Recent blood and CT scans haven't turned anything up, awaiting EEG results and seeing a children's neurologist. Could there be a connection? From what I could find, seizures are not common in MS, but if her neuro would benefit in knowing there is a family member with MS - I will definitely tell them. I just was wondering if anyone has any more info or just some good advice. I appreciate any tid-bits you could send my way.
Thanks!
Cam

I have a couple thoughts and questions for you, cam.

I wonder if your doctor's first step was to rule out a vitamin B12 deficiency when you were diagnosed in 2002 with MS; if not, I encourage you to discuss with him the possibility of doing testing now. Request testing orders for your niece as well. Consider asking your 9-year-old niece to accompany you and have the testing done also (or perhaps this was already done in her bloodwork – seizures can be a symptom of B12 deficiency). With 1 blood draw, 3 tests can be done: #1 serum B12 test; #2 serum folic acid test; #3 serum homocysteine test. A urinary methylmalonic acid (uMMA) test is also done to confirm a diagnosis of B12 deficiency in the blood.

I highly recommend this 50-minute documentary featuring Sally M. Pacholok, RN, BSN & her husband Jeffrey J. Stuart, D.O. (authors of the book, Could It Be B12? An Epidemic of Misdiagnoses); Lawrence Solomon, M.D., hematologist with Yale Medical School; Ralph Green, M.D., hematologist at UC Davis; and Donald Jacobsen, PhD, at the Cleveland Clinic (Homocysteine Research Lab):

"Everything You Want Your Doctor to Know about Vitamin B12"

http://www.youtube.com/watch?v=BvEizypoyO0


In the book, Could It Be B12?, page 300, "Appendix G: Signs and Symptoms of B12 Deficiency in Infants and Children" one of the entries is "seizures."

In the following 5-minute video, a pediatrician speaks about finding a B12 deficiency in a 9-month old baby; one of the symptoms he mentions is "seizures."

http://www.youtube.com/watch?v=8JVJKBwDCd8
Last edited by lyndacarol on Fri Jun 13, 2014 9:24 am, edited 1 time in total.
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Re: 9 yr old niece with seizures...MS family link?

Postby ElliotB » Wed Jun 11, 2014 12:58 pm

Good advise? Definitely tell them immediately.
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Re: 9 yr old niece with seizures...MS family link?

Postby cam » Wed Jun 11, 2014 8:26 pm

Thanks for the great info and advice, much appreciated! I was diagnosed with Vit B12 deficiency and pernicious anaemia around the same time as MS. I had a series of B12 injections until levels good then on oral supplementation since - levels still seem to be holding (sorry no #'s on hand). I will forward those video links to my brother to ensure my niece has had her levels checked, etc. Looks like this is the "moment" I was waiting for to get my "butt in gear" and have the talk with my family.
Stay well everyone and enjoy the summer wherever you are!
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Re: 9 yr old niece with seizures...MS family link?

Postby jimmylegs » Wed Jun 11, 2014 10:02 pm

hi and welcome cam

how odd! b12 deficiency and pernicious anemia should have ruled out MS as a dx.. did the docs clarify why you ended up with all three dxes?

also, this won't be comforting reading wrt your niece, but possibly useful anyway:

A National Profile of Childhood Epilepsy and Seizure Disorder
http://pediatrics.aappublications.org/c ... /256.short
"Children with current reported epilepsy/seizure disorder were significantly more likely than those never diagnosed to experience depression (8% vs 2%), anxiety (17% vs 3%), attention-deficit/hyperactivity disorder (23% vs 6%), conduct problems (16% vs 3%), developmental delay (51% vs 3%), autism/autism spectrum disorder (16% vs 1%), and headaches (14% vs 5%) (all P < .05)."

for each of depression, anxiety, adhd, asd, and headache there is a cross cutting spectrum of suspect nutrients.

Is there an Association between Blood Nutrient Levels and Depression? A Systematic Review
http://www.synergypublishers.com/jms/in ... e/view/516

Essential elements in depression and anxiety. Part I
http://www.sciencedirect.com/science/ar ... 4014000875

Assessment of Infantile Mineral Imbalances in Autism Spectrum Disorders (ASDs)
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3863885/

curious if you have looked into any other nutrients for your ms, besides b12? such a learning curve :)
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Re: 9 yr old niece with seizures...MS family link?

Postby cam » Fri Jun 13, 2014 1:28 pm

Thank you "jimmy legs" for such in-depth info/links. You are very passionate about information! I try to follow some of your recommendations from your previous posts...I do take supplements for my general health (and MS) - multi-vitamin, B12, Vit d, zinc/copper supplement, omega 3's - last year have avoided dairy, gluten, added more fresh, organic, raw ingredients, avoid GMO's and processed foods wherever possible. So I am slowly becoming for proactive and now it looks like I will be letting my immediate family know about my MS, just so that will allow a more complete family medical history for my niece. Now to look into all those links you sent....thanks again fro your help!
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Re: 9 yr old niece with seizures...MS family link?

Postby jimmylegs » Sat Jun 14, 2014 6:47 am

hi there, sounds like you are doing lots of good things! (i'm curious about what you do to ensure optimal magnesium status though!) ;)
i hope the links provide some good useful insight and info :D
i'm still curious how and whether the docs distinguished your ms dx from your b12/pa dx. i'm also super curious whether you've had a pca test since working to improve your total nutrition status.
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Re: 9 yr old niece with seizures...MS family link?

Postby want2bike » Sun Jun 15, 2014 6:08 am

Dr. Bergman has a video explaining autoimmune disease and how to treat it.

http://www.youtube.com/watch?v=zGmyUppmt-g
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Re: 9 yr old niece with seizures...MS family link?

Postby cam » Sun Jun 15, 2014 3:51 pm

You know I haven't pursued the Vit b12/PA thing - once the MS was "singled" out - No one really talks about it much now...I will look into it more - so much to learn/know. I will check into the PVC test also. I forgot to note I do have Mag supplement also - have it with a calcium as well as in the multi bit/min.
Thanks a bunch!
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Re: 9 yr old niece with seizures...MS family link?

Postby jimmylegs » Sun Jun 15, 2014 6:29 pm

yeah same here, except i was told that my o-bands and brain lesions weren't consistent with b12 deficiency. found out since however, that you can indeed have brain lesions with b12 deficiency, and that o-bands as an indicator of chronic inflammation are just that. i'd actually love to know if i still even have csf o-bands at all. if i felt like going for another LP that is. said no jimmylegs ever :S

re pvc test - did you mean pca (parietal cell antibody)? given your recent regimen it would definitely be interesting to see past and current results of that one.

can you tell me a little more about your cal/mag supplement? forms, dosage per pill, number of pills per day? do you know how much mag is delivered per day via your usual diet?
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