Megan’s Journey

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9 Year Old Angel

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megan (287)Megan was born on June 9, 2011-Dec 4, 2020. Since around Christmas time we noticed many abnormal behaviors, movements and other things in Megan. She started changing the way she walks, falls often and more. We started seeing seizures and began a process of investigation to find out why. Her EEG came back abnormal with continuous spike waves from the right side (meaning it never stops awake or asleep), she was diagnosed with hypotonia (low muscle tone), and her MRI came back abnormal with diffuse subcortical delayed myelination.. She was on medication for the Epilepsy now and started therapy to help her muscle tone to address her issues with walking and fine and gross motor function.

megan (39)While starting therapy they noticed she has sensory processing disorder as well as vestibular seeking behavior. I’m in shock because anyone who knew Megan knows that she was a healthy child up until recently. The neurologist is waiting to see if she responds to therapy. If she did not then we begin the path for a genetic diagnosis for the issues. Thankfully she responded to the medication for the seizures and she enjoyed her therapy sessions.

megan (142)About

She was in LOVE with Minnie Mouse. She loved PINK and BLUE. Minnie Mouse, and BOWS, she loved BOWS the kind of bow on Minnie Mouse’s head. She wanted a pink Minnie Mouse car with a bow on top when she grows up. She also loved Herbies.

Megan’s Mom Deena

megan (33)
48 Hour EEG

Megan was recently tested for JHD. Her test result came back inconclusive as the test can only detect expansions less than 100. Since she was symptomatic, an additional test that can detect CAG counts above 100 is going to be performed She was clinically, but unofficially diagnosed with JHD. 100 is a high jhd CAG count. She was officially JHD Positive according to the new test. Megan was a sweet 4 year old little girl at this time.

megan support (14)



6 Replies to “Megan’s Journey”

  1. Your daughter is beautiful! I wish I could speak with you and ask questions about your journey. My son was 4 1/2 when he passed from what doctors believe was jhd. I am praying for you and yours.

  2. If this is not Juvenile Huntingtons Disease,it sounds like intractable epilepsy and may need
    Cannabidiol to control symptoms of either Dravet or Lennox Gustalt Syndrome
    I have been around all forms of epilepsy since I was eleven.
    My spouse has had epilepsy since the age of fifteen months and when he was a child,
    he had to take five different anticonvulsant drugs to control his epilepsy,so I figured
    knowledge is power,and fear is totally useless as a reaction,so I went to my local hospital
    medical library to learn all I could about all the forms of epilepsy.

    1. She was diagnosed positive for juvenile huntingtons disease sadly seizures are part of jhd all different versions because of the way it affects the brain

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