Tag Archives: therapy

He is our superhero.

Day 8 of Guest Blogging for TSC Awareness

by guest blogger Melissa Courtright  (Caldwell, Idaho)

IMG_20141108_131428We have two children.  An older daughter Robin who is 11 (non TS), and Remy, who just turned three. He started having strange episodes at 4 months old that were later identified as seizures. He was officially diagnosed at 10 months old after having up to 14 seizures a day, and they did an MRI and found multiple tubers — over seven so far. They then did an echo and found he had three heart tumors, and has multiple ash leaf spots on his skin. He started having a speech regression at age 2 and we are working with speech therapy to help him. He also has some behavioral outbursts of frustration, maybe because his verbal communication is difficult, or his TS in general, or because, well, he’s just 3 LOL.

Remy is a loving sweet boy. He is empathetic to others’ feelings; he will cry at sad moments in movies, and cry along when others are sad. Yet he will still smack someone if they make him mad, but he will feel bad and give hugs. He is super smart, can do most complicated tasks and things at and above his age level. He plays most things safe, but is quite a fearless daredevil when it comes to physical activity. He is a ball of energetic energy, although his seizure meds make him easily tired, need breaks during the day and a take a long nap. He is a strong little man and will conquer his condition; he is our superhero.

super remy

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Doctors informed me he would need a wheelchair…imagine my surprise when he took his first steps.

Day 7 of Blogging for TSC Awareness

by guest blogger LaToya Martin  (Dover, Delaware)

20150227_120253-1-2Massiah was diagnosed with tuberous sclerosis complex during utero or fetal development. My Warrior was born with tumors on his brain and in his heart. He also has tumors behind his eyes and cysts on his kidneys. He started having seizures at one week. At six months, he was diagnosed with epilepsy. At 17 months, he was diagnosed with complex partial epilepsy with generalization, generalized convulsive epilepsy with intractable epilepsy and tuberous sclerosis complex. His current diagnosis is partial symptomatic epilepsy with complex partial seizures, intractable, 20141217_134205without status epilepticus, infantile spasms with intractable epilepsy and tuberous sclerosis complex. He may have anywhere from one to 18 seizures a day while taking medication. His current medications include Trileptal and Depakene three times per day in addition to  Sabril twice a day. He takes diastat acudial when needed for emergencies. He will soon be taken off Sabril and start Onfi. He will also be taken off his other meds one at a time depending on his seizure control. His current neurologist at A.I. Dupont Children’s Hospital, has discussed the Ketogenic diet, Topamax, vagal nerve stimulator, ACTH and Banzel. He was  on Keppra but needed to be taken off due to aggressive behavior. He has gone through numerous EEG/VEEG, MRI, CT and PET scans, sedations and ultra sounds.

20150131_154427Massiah has developmental and physical delays. I was told that he would be mute and mentally disabled due to the amount of white brain matter, tubers, and tumors on his brain. Doctors also informed me that he would need a wheelchair due to low muscle tone throughout his body,  especially his legs.  So, you can imagine my surprise when he started crawling and taking steps. Also, imagine my surprise when he said mom for the first time on my birthday; just weeks before turning one himself.  Massiah receives aid from an early childhood educator, behavioral, physical, occupational, and speech therapist. He just completed the shapes puzzle by himself after working on it for over a year and now says 60+ words. Massiah is very active and energetic. He enjoys Jake and the Neverland Pirates and Mickey Mouse,  legos, cars, air planes and throwing balls. His favorite movie is Disney’s Cars.

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Unconditional Love

 Day 3 of Blogging for TSC Awareness Month

by guest blogger Caroline Clyborne Ramirez  (Austin, Texas)

image4-2Since our son, Leif, first learned to talk, we’ve been drilling him on a basic call and response:

“Why do I love you?”

“Because I’m your son.”

We did this because we wanted him to know that he was loved, no matter what. He had our permission to be lost and a knucklehead while figuring himself out. He could worry about other problems, like having to eat vegetables and sharing. He did not need to worry about courting his parents’ love.

Then, my daughter was born. At four months, we learned that Colette had a diagnosis– tuberous sclerosis. She had about 20 benign brain tumors and epilepsy. We didn’t know if she would be smart or independent. Our blank slate of a baby came with no guarantees.

The grief and terror of the first couple of months were intense. I image7wanted to pull away. I wondered if I could ever love this child like I loved my son. What had I told him? “I love you because you’re my son.” I’d promised him. Could I sincerely offer that to my daughter? I felt like a fraud.

Life got busy. I stepped away from my career and into the life of a medical advocate. Colette had weekly PT, OT and eventually speech therapy. She had frequent overnight hospital stays to adjust medication any time we saw seizure activity. There were eye appointments every 3 months because her seizure control medication endangered her vision. We drove to Houston every image6three months to participate in a clinical study. The insurance company required weekly hounding to cover the basics. It was only the beginning, and already, the tasks made me a busy bee. My son loudly demonstrated his frustration with the redirection of my attention. I tried to be enough and constantly fell short. I worried that our sleepy, medicated baby was the most flexible member of the family. Her big blue eyes sparkled, and she never complained.

It’s an odd thing to be given an open-ended diagnosis. There was no adjusting to the news. The hope and despair pulled me up and brought me down like a roller coaster– tea leaf predictions from smiles and gas. I wanted to either grieve or enjoy my child. The image2“what ifs” of the future were easy to Google, from skin lesions on her face to LAM in her lungs. What if she can’t learn and spends the rest of her life in diapers? What if she develops behavioral issues and hits us? My one life experience as a substitute teacher in a Special Education had taught me that was NOT my population. I did not reach out to moms with older kids whose fates scared me. I clung, tooth and nail, to the shallow end of the pool and hoped we would never have to drown.

I was in constant fear that she would take a turn for the worst and we, as a family, would not be okay. Meanwhile, Colette was a bright-eyed and happy baby. She splashed the water in her bath and gnawed on her Sophie giraffe. It was a bizarre juxtaposition. Colette was the poster child of innocence. I was her strung out Mom. In tiny slivers of clarity, I dug my nose into her neck and smelled her yummy baby smell. Regretfully, I often saw TSC more than I saw my daughter.

That was when she had seizure control. When that ended at 10 months old, my nightmares developed a physical form. I took detailed notes of what movements we saw and sent them to the white coats in this army. Please, I said. Please protect Colette. Our precious baby continued to smile, but she almost never babbled.

Even though we were creeping toward the chasm that I’d feared would swallow our family, I felt calm and sad. I acknowledged more publicly what was happening, and wept big tears as I faced how little control we had over a disease that had no cure. Colette had good days and bad days, and so did I. I spent my time taking her to appointments, arguing with insurance, and trying to keep things normal for our family. I felt depleted and I felt despair.

I realized at some point that my nightmares were a very loud image3statement to both my kids. Colette’s imperfection had made Mommy sad. TSC was in her DNA. Colette, by simply being born, had brought TSC and all of its challenges into our home. Her sweet demeanor may have been lovely, but it was a consolation, a kindness that momentarily offset a mountain of pain. She had more to worry about than having to eat vegetables, and even more to worry about than experiencing seizures. She had caused her family to suffer by means of existing. Something was terribly wrong, and that something was within me.

There was a woman on Facebook with a daughter who was cognitively two and physically 25. She kept posting proud mommy posts, and she baffled me with her acceptance of her child. I didn’t understand her, but something in me was shifting. I realized that a 2-year-old is lovable and delightful. My expectations of her child– that her child act 25– imposed onto her child’s existence something presumably painful that might not be real.

As I thought about her child, I was flooded with memories of my beloved Grandpa. Grandpa had Parkinson’s. He was sweet. He threw a purple foam ball back and forth with me. I didn’t “know better” that he’d lost something. I just loved him, and he loved me. Maybe I didn’t need the conditions I had for loving my child. Maybe I could just love my child.

As my eyes opened wider, I became aware also of how my vanity bled into my relationship with my son. He was so smart. He was so handsome. My pride appreciated pieces of him he never chose for himself. It was an easy mistake to make. In a family of nerds, his brains made him feel like our boy. However, he was getting extra credit because of his luck– because I was proud of his gifts.

How unfair of me. My job was to help him develop his character, and my preference for his smarts added conditions to my love and modified my expectations of him. His sister aside, I saw a rot forming in my parenting. Colette’s condition challenged my vanity and made me see both kids more clearly.

Humbly, as a flawed person mid-stream, I am challenging myself to change what I expect of both my kids. I am going to love them both because they’re my kids. I am not going to give Leif extra credit for being smart, and I am not going to turn Colette’s existence into a burden anymore. I’m just going to support her health as she needs and enjoy her in the present, stripped of all the disparaging “shoulds” that diminish her humanity. If I need to, I’ll think of Grandpa and find a way to throw a ball to my daughter. I’ll appreciate the day she can throw it back, but I won’t love her more for it.

I’ll keep love simple. That way, my kids can stop worrying about the quality of my love and start focusing on the road in front of them. When I whisper in my daughter’s ear that I love her, I now really know the answer. I love her because she’s my daughter– no matter what.

Brain surgery is coming this month. Finally, we’re ready.

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All it takes is one baby zombie to start the Apocalypse.

My goal is to blog 2-3 times a week, but clearly that has not been happening lately. Our weekly schedule has gotten a whole lot busier. We’re really trying to amp up our time we spend with Connor working on his physical therapy. He’s finally sitting independently! He even retired his bathtub lounge chair and sits up like a big boy for bath time. He also had a checkup at the pediatrician and she recommended giving him solids three times a day. I may have let her assume I had stuck with her previous recommendation to go up to twice a day…

Look, it’s not that I don’t want to feed my child, but for the love of God, when she said three times a day, I almost asked her if I could just take a bullet to the head instead. When Connor started solids he was pretty cooperative, but as time went on, he decided it was fun to swing his head around vigorously while we desperately try to catch his mouth. Sometimes he seemed to think this was funny. The thing is, he doesn’t complain when the food is in his mouth, he just wants to make a game out of letting us put it in. Meal time stretched into oblivion. But I’m happy to say that while getting three solids in EVERY day has proved to be elusive, we are consistently getting him two, and once he realized we weren’t giving up, he started to become more cooperative. Sometimes, he chows down in a matter of minutes. Especially prunes. Hmmm.

We’ve added a few other things to our weekly schedule as well.

Monday-private music therapy

Tuesday-physical therapy (most weeks, not every)

Wed-group music class

Thurs-swimming

Fri-Mommy lies on the floor exhausted letting baby beat her about the head and rip her hair out just so she won’t have to get up.

And it won’t end there….we are looking at adding occupational therapy (more as a precaution as his fine motor skills appear much more on target than gross motor),  and speech therapy (you’re probably wondering what this looks like with a baby that doesn’t even talk yet. Me too. I’ll let you know.)

Lest you think I’m going to be one of those overscheduling moms that ends up on Dr. Phil, this is all intended to be therapeutic and catch up on his delays. My dream is for him to catch up to his peers so I can be a normal mommy, dump him in front of questionable television programming, and spend all my time in the Macy’s shoe department.

We had a highly amusing moment in swim class the other week. One of the baby skills is blowing bubbles in the water. I kid you not, right as the instructor has us put our mouths under to do so, Connor makes the most incredible bubbles you’ve ever seen. Just not with his mouth.

I’m hoping he will learn to give me a kiss soon. I have no idea at what age kids learn that, but the other day, I thought we were there. I leaned down to give him a kiss, and he immediately reached up, grasped my hair on both sides of my head, yanked my face down to his, and….bit my nose. Soooo, yeah. No more Walking Dead for him.

Which leads me into some thoughts I’ve been having about some of the items that dropped his scores in Boston during the cognitive testing. Apparently, he should know the word “no” by now. But I realized  he really hasn’t had the opportunity to learn it. Not to sound like one of those permissive moms where anything goes, but the reality is we don’t have a lot of stuff to say no to. He’s not as mobile as the average 10 month old, so he doesn’t get into stuff he shouldn’t. And I seem to want to teach him bad habits by snorting with laughter when he’s tearing my hair out of my head or pffting food at me. I’m going to rectify this by placing the following items around him on his playmat: a rat trap, household cleaner, a stick of dynamite, matches, and a machete. Every time he goes for one of those items I will scream NO! And that will be that. I should write a parenting book. There’s more gold where that came from.

I’ve also been busy preparing for the March on Washington coming up at the end of February. I’m working on updating the Faces of TSC booklet which features Georgia families affected by TSC that we share with our representatives and senators when we meet with them. I also started contacting some of the representatives to set up our meetings. This proves to be more challenging than expected as some don’t confirm a meeting until the last minute. There goes our brilliant plan to organize meetings in advance by building. But I’m excited about it. I think this will be a really interesting experience.

(Please don’t forget to click the Top Mommy Blogs link to the right to vote for me! You can vote once every day.)

Brains...errr, noooose!
Brains…errr, noooose!