Tag Archives: SEN

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

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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A New Diagnosis

When I fill out medical forms that ask me for Connor’s diagnoses, I write tuberous sclerosis complex, epilepsy and developmental delay. As of Friday, I will now write autism

When Connor was first diagnosed and we read all the possibilities that could possibly come with TSC, autism terrified me the most. I really didn’t understand it. I’d worked with kids with varying degrees of autism in the classroom, some of whom I was not remotely equipped or provided the training to work with and others that were favorites of mine. But I was terrified of the word. I thought that if the day came that we received that diagnosis, I would jump out of a window.

Two years changes a lot.

I can’t say it came as a total surprise. I refer to some of Connor’s behaviors as “quirks.” I guess I was just hoping they could stay “quirks” and not become a diagnosis.

We went to Boston for his two-year visit with the TSC study. It was a low key visit since Chris and I had both caught Connor’s cold from the week before and were not particularly energetic (and why I didn’t get in touch, Ann–we’ll be back next Feb!). We also had an appointment with the Boston TSC Clinic. Even though I suspected deep down that this day was coming, I didn’t actually realize it would be Friday. The study had sent his results from the autism scale given the day before to the doctor. The words “Connor has autism” were never actually spoken. We were discussing some of his behaviors and suddenly we were talking about therapy options in addition to what he already receives. An education specialist was brought in so she could help us find local resources and I found myself saying, “So this is it? Is this an official diagnosis?” It was. But the sooner the better and we now move forward.

We also finally got a little more detail on his MRI. It wasn’t as specific as I was hoping for, but we do now know his brain has somewhere around 20-30 tubers, probably closer to 20. They are scattered throughout. I thought he had two SENs in the ventricles of the brain, but he actually has three. However, they are so small that they are nowhere near being classified as a SEGA (which can block fluid in the brain and require either surgical intervention or use of Afinitor or Rapamune) and therefore aren’t currently an issue (and hopefully never will be).

I’m sad that we only have one visit left with the Boston study. I really enjoy going up there. I think I could actually live in that city in spite of the cold and that says A LOT. I was really touched by the fact that while we were there, non-stop coverage was being given to the deaths of two firefighters and who they were. It gave the city a close knit feeling and reflected a genuine interest in the loss of two heroes. It’s not something I’ve ever seen in the 20+ years I’ve been in Atlanta, where we just get the 6 p.m. death count.

These are the only photos I took which tells you how off I was this trip.

First big boy flight with his own seat. On the way back we were told we couldn't use this seat because it wasn't airline compliant. Gotta love consistency.
First big boy flight with his own seat. On the way back we were told we couldn’t use this seat because it wasn’t airline compliant. Gotta love consistency.

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Connor loved the noisy geese.
Connor loved the noisy geese.