Tag Archives: IEP

Boston TSC Study, Parenting, Travel, Tuberous Sclerosis

Connor’s version of March Madness includes an MRI and sedation

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So much going on this Month but we made it.

We gave him a playroom, and he acted like he'd been sentenced to Riker's.
We gave him a playroom, and he acted like he’d been sentenced to Riker’s.

We still have a child named Connor, in case my lack of blogging made you think he had packed up and run off to Borneo as revenge for us regulating his iPad time.

Let’s back up to February when we heard a loud thump followed by crying from his room. We ran in to discover that we had a Defcon 1 situation and Connor had escaped the crib. He wasn’t so much hurt as I think he was surprised by the floor, so he transitioned to the toddler bed that week. I did not expect it to go well. We moved more toys into the room, added a gate to the door and removed all potentially dangerous and/or greasy objects from his drawers. The first night he cried and yelled for two hours and I had to rock him to sleep. Not because of the bed, but because baby gates have always inspired great rage in him.

IMG_3673But after that, piece of cake. He would actually get in bed and stay there. I was shocked. I had expected him to trash the room and pass out in various spots on the floor. Instead, he stays in bed until light begins to peek through in the morning, and then he’ll either go play or drag objects into bed with him. In the beginning I’d find him passed out in a sea of pants and diapers he’d dragged from the drawers (yeah, no idea) but he has since graduated to his puzzles and trucks. The transition has been incredibly easy as long as he has his Pillow Pet dog to shine on the ceiling.

Staring into is even better than watching the ceiling.
Staring into is even better than watching the ceiling.

March was probably the busiest month we’ve ever had.

Washington D.C.

Chris and I joined other TS Alliance volunteers from around the country again this year to meet with our congressional representatives and senators on behalf of our state. I’m excited to say that the Alliance got the most signatures ever in support of the Tuberous Sclerosis Complex Research Program. Georgia Senator Johnny Isakson was one of the authors of the senate Dear Colleague letter, and in the House of Representatives from Georgia, both Rep. Hank Johnson and Rep. David Scott signed on in support again this year. We were fortunate that the meetings were set for Wednesday March 4 since a snowstorm blew in and shut down the government on Thursday. Despite the cold, Chris and I got a lot of sightseeing done. And I only busted my butt on the ice once.

Boston

IMG_3995We flew home from D.C. on a Friday, picked up Connor from my parents and flew up to Boston on Sunday morning. I had booked an early flight since this was our last trip given Connor is aging out of the TSC study and I wanted to make the most of the day. I was not aware at the time of booking that we would be losing an hour of sleep thanks to Daylight Savings. We boarded our 7:30 flight, took off, and landed right back in Atlanta 10 minutes later due to an issue with the landing gear. I was tired and disinterested in dragging a sleeping toddler off the plane so my thought was, if we gotta land on it, let’s just do it in Boston. If it meant spending the day in the airport waiting  for a flight we weren’t going, but crazily enough Delta had a plane ready immediately so off we went. Boston was still covered in several feet of snow from the big storms the previous month. Roads and sidewalks were cleared, but space was tight with the mountains of dirty snow and abandoned cups on each side of the sidewalks (because apparently trash melts too when thrown in a snowbank).

While we were there we scheduled Connor’s annual scans. He had a brain MRI and an ultrasound (the recently updated IMG_4016protocol recommends an MRI of everything, but I just couldn’t seem to get someone on the phone that would make that happen this time). Since kidney involvement is common, we prepared ourselves for the possibility that Connor would have some sort of involvement by now, even though his previous scans at birth and six months were clear. When the tech came back to take additional photos after showing the initial pictures to the doctor we were pretty sure we were right. Connor does now have signs of TSC in his kidneys–innumerable minuscule angiomyolipomas. They are not problematic or affecting his kidney function, so we will just continue to monitor for growth. Hopefully they will not ever require intervention.

Weirdly, though I prepared myself for changes in the kidneys, I did not expect any change in the brain. There is no rational reason for that, I just didn’t. Turns out that one of his SENs in the ventricle has grown from 5mm to 7mm. It does not require intervention at this time, but the doctor recommended a followup in six months to be safe, rather than waiting the usual year.

So, not the best news, but certainly not the worst, or anything too crazy for TSC.

My crowning achievement of the trip was while Connor was having his MRI. I fell asleep in the waiting room, and awoke to the nurse telling us we could come back and see him. I jumped up in a half-asleep state of confusion not realizing my leg was completely asleep. I mean absolutely 100 percent numb and unfunctional. I crashed to the floor drawing a gasp of horror from an onlooker. I tried to get up, but couldn’t. My leg could not support any weight whatsoever. I looked really cool, but seemed unhurt…until we flew home that night. Then began the first of several days of my ankle looking like this:

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But I must reiterate — I looked really cool.

Katie Beckett and IEP

Upon return I dealt with the immediate turnaround of Connor’s Katie Beckett renewal paperwork. They give you like a whopping two weeks to get it done, plus it came while we were out of town and was due when we would be gone again. Thankfully, we had an easy renewal this year (assuming we get re-approved), requiring only some basic forms and not the common 10,000 pages of therapy notes.

Then we had Connor’s first IEP meeting since he’s aging out of Babies Can’t Wait. He will begin at the special needs preschool in April, attending Monday through Friday from 8 until 12. It went pretty well. Their goals were well in line with what we were looking for. He will receive 45 minutes of OT, 45 of PT and 60 of speech a week. Plus he will continue with private speech, OT, music and aquatic.

Connor’s 3rd Birthday Party

We celebrated Connor’s construction-themed birthday a week early since we needed to be out of town for a wedding on his actual birthday. He was very accommodating in that he doesn’t know what date it is anyway and never has objections to being given trucks on any given day. Rosie the dog donned her construction gear and I even tried my hand at amateur cake making:

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A few days later Connor went to my parents and we went to Antigua, Guatemala to round out a whirlwind month…but that’s my next post. Stay tuned so I can get all Rick Steves on you.

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Current Events, Guest Bloggers For TSC Awareness Month, Parenting, Tuberous Sclerosis

Alee’s Advocate

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Day 21 of Guest Blogging for TSC Awareness

By guest blogger Mindee Mata  (Kilgore, Texas)

photoWhen I was first asked to write about Alee I thought..sure ..no problem..I have been Alee’s advocate, her voice for 4 years. I can talk about her forever. As I prepared, I realized that on a daily basis I intentionally put all the horrible parts of her disease in the back of my mind. Her past…her future… I can not think about those things. I have to think about today and today is good! But in order for you to understand Alee I needed to revisit those things.

When Alee was born she was perfect…just like every baby should be but I was still scared to death. I had a 17-month-old and a 4-year-old. I wish I could say I enjoyed every minute of her infant stage but in reality I was on auto pilot until the day after her 6 month check up. She was falling asleep, but every time she started to doze off she would almost jump. It reminded me of the infant startle reflex. At first it just happened every now and then, but it gradually became so frequent that it happened every time she would try to sleep. It would happen all night long off and on with crying in between the clusters. I met with her pediatrician at the time but he had no answers. I called an old pediatrician I had used when we lived in Houston and even went to see her. She set us up with a neurologist but still nothing. Four months went by and she eventually stopped. I was relieved but deep in my heart I knew something was still wrong. My whole life changed one night when she was 11 months old. We were getting ready for bed and she seemed hot, so I gave her some Tylenol and thought she must be getting sick. We went to bed. A little while later I heard the awful noise…the noise I would start hearing so frequently I could hear it in a stadium of 100,000 people. Alee gasping for  breath. I looked at her and she looked like she was in a daze. She could not make eye contact and was completely limp. The only noise was her trying hard to breath. I had no clue what was going on. I had never seen a seizure before, especially one that started like this. My husband called 911. After 20 minutes of the blank stare, the all out seizing started and she stopped breathing all together. I had to do CPR on my baby girl…me…I just did it because I had no other choice. There was no time for an emotional breakdown. The EMT’s arrived, gave her an IV, and headed for the hospital. She was still seizing. At the ER we were able to stop the seizing but her breathing would not return to normal. They were forced to intubate and call for life flight to take her to the nearest pediatric ICU. My husband and I watched all of this basically in shock. I held her, sang to her, kissed her, but I held it together…until she was being loaded on the helicopter and we could not go with her. I looked at her little body all attached to wires and tubes with tears running down her face but no sound. I felt so helpless. The next 30 minutes felt like a lifetime as we drove entirely too fast to the hospital. In my mind the next part is just a haze of doctors, tests, sedation, and questions, but still no answers. We were in the hospital for five days until finally we had a diagnosis. There were eight doctors in the room when they came with her test results. I can remember watching the second hand tick by behind the doctors head because if I did not make eye contact it would not be real. She had tuberous sclerosis. WHAT!! What was that?  And there is no cure? What do we do? Do our other kids have it? We had so many questions, but we finally had a reason for why Alee was sick.

The next year was the hardest thing I have ever had to go through in my life. Alee was in the hospital 1 to 2 days every week. We could not get her seizures under control.  We were photo-18trying every medication available and we just had to wait and see if any would work. She literally ate, slept and seized. My whole life revolved around the seizures and the hardest part was it was affecting my other kids. My son was looking forward to kindergarten, so his first day of school we all got ready and headed out to walk him in and get some pictures. Our house was only three minutes from school, but it was just long enough for Alee to try to fall asleep and the seizures began. As we were walking in Alee started having a long seizure so I had to lay her on the grass in front of the school on her left side and start getting my emergency meds ready. My son was so nervous he was going to be late on the first day, so I gave him a hug and said, “I know you can remember how to get to your class so go ahead and go and I will be there in a few minutes to check on you.” He is so brave. He went and  I watched my 5-year-old have to grow up too fast because of this terrible disease. Alee’s sister went with me everywhere. I was forced to stop working because Alee need 24-hour care and I did not have any family in Waco. Alee was having to get blood work all the time because we were changing meds so frequently and we needed to know how much was in her blood. She had so many IV’s and blood draws that her little veins just collapsed. At one visit they strapped Alee to the board and started trying to get blood. No luck. By stick nine she was screaming and in and out of seizures. The tech was crying and I looked over at Isabella who was sitting like a big kid in a chair and tears were just running down her little face.  All she said was, “Mommy, please make them stop.” Well, I basically lost it then. After stick 14 there was still not blood so we called it a day and would try again tomorrow. I realized that we were all suffering. My husband and I decided to move closer to family so we could have some help with the older kids. And..well..that was God’s plan all along. We had not even started looking for a job yet when my husband received a call that there was a job opening in his home town.  So, within a few months, we moved to Kilgore.

Alee’s social worker at the time told me about a clinic for TSC kids in Houston so I got on the waiting list. After a long 4 month wait we were finally able to see the docs there. Her new neurologist wanted us to try an experimental drug, Sabril, and at this point I would have done anything. I gave it to her for the first time on a Monday and by Thursday she was down to three seizures a day. My prayers had been answered. But the downfall of this drug is it can cause permanent vision loss. Today Alee has lost a little of her peripheral  vision and once that is gone it will take it all. So, we were forced to make a decision. How much vision loss is too much? So when all of her peripheral vision is gone we will take her off the one and only drug that is keeping her from seizing out of control.  We will start the cycle all over again…this may be in six years or six months. We just have to wait and see. On top of the seizures she has tumors in her brain, heart, eyes, skin, face and kidneys. We will more than likely have brain surgery at some point. She will develop polycystic kidney disease, go into kidney failure, and be placed on a transplant list. I know the reason God made her so strong willed…it is because she is going to have to fight for the rest of her life! Her struggles are not going to get any easier, just harder as time goes on. When you think about your children in the future you picture them playing with their friends at recess at school, falling in love, going to college, getting married, having children, but that is not the life that was given to Alee. She has a different path. She is going to be an advocate for TSC. She will help find a cure for this horrible disease.

I wish I could say I was always this positive, but in reality, some days you just want to give up. The loneliest place in our house is the laundry room. That is where I go when TSC gets too big for me to handle. Many, many breakdowns have happened in there, but it is also where I pull it all back together. The emotional side of any disease is too much for most people, but that is not all that is involved when you have a sick child. We are struggling now with so many decisions because she is about to turn 5. Public or private school? What things do we fight for on her IEP? How do we handle that she does not sweat due to long-term use of topamax or her sleepiness from all her meds at school? How do you send your baby to school knowing that she cannot communicate well enough to tell you what is happening there?  I really do believe that God carefully chooses special needs parents and children. You have to be strong, patient, and sensitive at the same time. You have to be able to comfort your seizing child while fighting the ER doctors for her life. You have to be able to hold it all together when the specialty pharmacy forgets to send her meds and you know the outcome will be a life-threatening hospital stay.  Our entire family fights the TSC battle every day and we will not stop. We will give everything but up!!!

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Current Events, Guest Bloggers For TSC Awareness Month, Parenting, Tuberous Sclerosis

Fighting for My Child

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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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