Tag Archives: learning disability

I like to think that God has given me other gifts to make up for me having such a rare disease.

Second Annual “Blogging for TSC Awareness Month” Day 23

by guest blogger Kate Carter  (Ann Arbor, Michigan)

297781_1483085518122_1098623929_nI was diagnosed with tuberous sclerosis back when I was 2 ½ years old. I am now approaching my 22nd birthday. So, I have lived with TSC as long as I can remember but I haven’t let that stop me. As far as we know there is no genetic link so it’s just a mutation that happened to pick me. I have seen many things through my times at hospitals for annual visits. I remember being in one of the early MRI machines and watching the improvements in research and other medical developments. Sure, things got tough at times but I always maintained a positive attitude. I am very luck to have a “mild” case of Tuberous Sclerosis but still very affected. If it weren’t for such an active lifestyle and healthy diet, I wouldn’t be this “well” off. But through it all, there are still challenges. In my 8th grade year I suffered a grand mal seizure that lasted 90 minutes. I came away with no brain damage but still managed to get the flu. Somewhere up there someone is looking out for me. I haven’t had a specifically labeled seizure event since then. I have things that we are calling “spells” because they aren’t sure. It’s a mix of anxiety attacks and seizures but not bad enough to make me unconscious. It is very frustrating to not know what these things are and know how to treat them. I often think though, my life could be so much worse and I know all us TSC suffers all have things we 1450206_10201859552184922_1568234232_ndon’t understand. The world doesn’t understand. I hope that continues to change.

Of all the challenges, my learning disability has been the most difficult thing for me in terms of this disease. Some days I would remember things and
others I would draw a complete blank. I can’t thank my teachers, professors, coaches, and parents for helping me thus far in life. Since I just graduated from college, it is time to begin the next chapter in life and to learn to live on my own. Throughout my life I have never felt like I wasn’t “normal.” I like to think that God has given me other gifts to make up for me having such a rare disease. I have excelled athletically. In high school I was nationally ranked in the 800m by my senior year and all-American on relay teams. All of that lead to the wonderful scholarship to my respected university, my coach had no idea what my disease was but took a chance on me and I can’t thank her enough. Just because I 31393_1494934937388_733010_nhave a certain disease doesn’t mean I can’t do things like my peers. My parents have been by my side from day 1 but have to slowly pull back because I’m aging and have to take on my own responsibilities. I am both excited and nervous for the leeway. Wondering what will happen next, but I figure if I’ve made it this far. I’m sure I’ll be just fine.

To all those that are younger than me and or parents, I suggest if able get involved in sports. That has kept me healthy in more ways then one and always looks at life positively. Sure times will get tough and you will have breakdowns but just know there is always a tomorrow and another challenge to master. Always surprise. Let’s make the world aware of us.

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An Eleven-Year-Old Takes on Capitol Hill

Day 15 of Guest Blogging for TSC Awareness Month

By guest blogger Jennifer Silva  (Prince George, Virginia)

TS walk and KD 016Most people never forget the day something tragic happens to their child.  Little did we know September 19, 2002 would put us on a never ending journey.  What started out as a normal morning that day, ended in exhausting weeks and months of the unknown.  My first child Jared was born five weeks premature, after complications of preeclampsia.  Even though he made his debut into the world much earlier than anticipated, he was the image of health.   He weighed 5 lbs and 15 ounces, with healthy lungs and heart.  He incurred a small bout with jaundice, but other than that everything was seemingly great.

On September 19, 2002, Jared was approaching 9 months old.  He played that morning, with no warning signs of what was about to happen.  Shortly after he laid down for his nap, I heard a very odd sound coming from his room.   After a few moments, I went to see what the sound was. I was in total shock at the sight in front of me.  Jared was in a full seizure, jerking about in his crib, and foaming from his mouth.   His dad was home at the time and called 911.   It seemed like an eternity, before the ambulance arrived.   That seizure lasted more than ten minutes.   Once at the hospital, doctors weren’t sure what had caused his seizure.   His cat scan revealed what was thought to be blood.  He was transferred to a larger hospital, into a PICU unit.

 An MRI was done and we were told he had bleeding on his brain.   After several days in the PICU, hospital social workers started questioning us as to what had happened to Jared.   Jared moved down to a step down unit, and things started to get weird.  We were being treated very oddly.   Jared had been at the hospital for a week, when the local sherriffs’ department showed up and said that someone at the hospital had reported a possible shaken baby case on us.  We were in total shock. Within days we were in court being asked by a judge if this had occurred.  Of course it hadn’t.  They put the poor child through a whole body x-ray to see if any broken bones had healed over from past injuries.  The case was considered unfounded, and we left the hospital with Jared after close to two weeks has passed.  The watchful eye of social services followed.

Months went by and Jared did well on his anti-seizure meds.  An MRI follow up was done, and to our surprise, the blood was still there after months.  That’s when they knew there had been a terrible mistake.  Jared had a tuber, not blood.  A little more time went on, and at Jared’s next visit, it was discovered that Jared had odd white spots on his back under a wood’s light.  That’s when the words tuberous sclerosis came up.   Of course, back then there really wasn’t that much info out on the web, and most of it was very traumatic information.

Jared went on about his childhood under the watch of his neurologist.   He did very well, with few seizures and few tubers.  As he got older things did change some.  The skin abnormalities have come out (angiofibromas, café au lait, depigmentation, some forehead plaques), and some learning problems have been noticed.   Jared did so well on the seizure side of things; he went for years without an MRI.  Everything changed on December 26, 2011.  Jared started having seizures and was rushed by ambulance to the hospital because he wasn’t breathing.    It was determined that he had strep throat and had outgrown his seizure med levels.  An MRI was done, and they found a SEGA.  The SEGA didn’t cause the seizure, but it most likely wouldn’t have been known about, if not for the seizure, until it caused problems.

Initially he was just watched, but then we saw a pediatric oncologist who ordered a new MRI.  It had been eight months since the seizure sets, and Jared had three SEGA’s by then.  He started afinitor, and as of March 2013, his SEGAs have drastically shrunk.  In June he will have a new MRI and go from there.   Jared accompanied me to the March on The Hill in 2013.  He saw how government works, and was amazed at all of it.  We have had several publications about our story recently and I am glad to see TSC getting attention.   When I took on Chair of the TS Alliance of Virginia, I knew then that I would have an uphill battle. But with a little effort change can happen.   Jared is a typical 11-year-old child now; he has some issues, but we are grateful for all the new advancements in TS world.   His father and I divorced years ago and have given Jared a large extended family.    Jared is a special child, with lots of family supporting him.

I know one day he will help out others. He helped me stuff and mail out envelopes for our Virginia Educational Meeting in June.  He said, “Wouldn’t it be great if all these people showed up to support TS?”  The world needs more caring, compassionate 11-year-olds like Jared.

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?

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