Fighting for My Child

Day 14 of Guest Blogging for TSC Awareness Month 

By guest blogger Jessica Sharon  (Virginia Beach, Virginia)

I will never forget that day in November three years ago when my son Joey was diagnosed with tuberous sclerosis at the age of 7. At times it seems like it was only yesterday, and at other times it seems like it was forever go.

I went to wake him up for school like any ordinary day only to find he wasn’t responding to my voice, which was often typical being that he was NOT a morning person; only to roll him over and discover his eyes were rolled back in his head and he began convulsing. My initial thought at first was that he was playing a joke on me as children often do and being silly, but I very quickly realized that was not the case. It was the longest 30 seconds of my life and it seemed to go on forever. When he tried to get out of bed and walk, he immediately fell to the floor and had no feeling in his arms or legs. He began to cry in fear that he couldn’t walk and had to crawl to get around. I called 911 because I had no idea what to do or what was wrong with him. After all, he was a normal healthy child and had never had any health concerns before.

After admission to CHKD (Children’s Hospital of the Kings Daughters) in Norfolk, Virginia and numerous neurological tests, it was determined that he had TSC with lesions on his brain and heart. Thankfully, over time, the spots on his heart just went away, but spots had formed on his kidneys. I had never heard of this disorder before and had so many questions and concerns.

Fast forward three years to May of 2013. He is still averaging 3-4 absence seizures a week while on five epilepsy medications. We have tried just about every epilepsy medication out there to no avail. I always thought the seizures would be the worst of it all, but honestly, it’s the learning disabilities, mood changes, and just the overall change in his personality that has affected him and our family the most. He doesn’t want to be involved in any sports or activities that put him in a position to be surrounded by people with the possibility of a seizure occurring. It was such a struggle and an upward battle to get him an IEP within his school. As parents you truly must fight for them and be their biggest advocate because no one else will. He needed one desperately because his confidence was very low. He never felt smart, and he just struggled every day within the classroom; he is so bright and intelligent, but all the medications just seem to suppress much of that. He will be undergoing resection surgery in June at VCU medical center in Richmond to remove the cyst they confidently believe is causing the seizure activity. There is no guarantee that this will be the end of seizures for him, but as his mother, all I can do is give him the best chance at normalcy and a life free of seizures. After all, isn’t that what all of us want for our children, for them to be happy and healthy?

PIC 3-1

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5 thoughts on “Fighting for My Child”

  1. HI there MUM and Jessica Sharon,

    It is a difficult road and your assessment of seizure management versus life’s everyday challenges life is right on. Even though our daughter had/(has) FCD, we saw dramatic increases in development after her first resection. Then even though her seizures were only partial in nature, her development was still affected. Her second resection and resulting reduction in medication load, has since allowed her to thrive. I really hope after this resection you see big developmental improvements and a reduction of the medication load. I agree with you too, the medications can have big effects (good and bad) through global slowing of brain function, thereby effecting every aspect of life.

    -ken

  2. Joey is so lucky to have you as his mother. We love you and Joey and are praying that this operation will lead to a much brighter future for the both of you. Love your uncle John.

  3. Thank you for sharing your struggles. It is probably the most heart breaking thing to see your child unwell. My husband has work from time to time in Tanzania. While he was there, one family came to the house when he was staying and they begged them to take their son. He was so sick and they had no money to look after him or feed him. This world could be not the best place for the children. That’s why I teach my children that the best only yet to come. If we trust God to take care of us. God bless & may you have all the strength that you need for now.

  4. As I sit here and type in tears, I just want you to know (in case you don’t know already) what a wonderful and loving mother you are, to give it your all at caring for your son. You made a valid point when you stated that parents have to be the biggest advocate because no one else will. My 6 year-old son has TSC so I know exactly what you and your family are going through. And you know there is a large support system within our TSC community of families. Stay strong.

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