Tag Archives: anxiety

He is happy. He is loved.

Second Annual “Blogging for TSC Awareness Month” Day 12

by guest blogger Shannon Arndt   (Newport, Michigan)

first placeBladen.  For so long Bladen was my imaginary child.  You see I had his named picked out before I even met his father.  As soon as I heard the name, I knew.  This would be the name of my son one day.  I envisioned a strong boy, popular, good-looking and with a pretty awesome name.  Once I met my husband, Russ, we couldn’t wait to have our first child.  We started trying to get pregnant on our wedding night.

My pregnancy had gone pretty smoothly.  I worked, ate and enjoyed telling anyone willing to listen that I hoped to have a boy.  And as luck would have it, we found out we were having a boy!

Around 31 weeks, I had been running around, arrived late to work and just didn’t feel right.  I called my OB and he said to come in.  They couldn’t get a good heartbeat and said I was really dehydrated so off I went to the local hospital.  There they hooked me up to IVs for fluids and I got to see my baby again via ultrasound.  The doctor said everything looked good but wanted me to come back to see a perinatologist.  We made the appointment and two days later Russ and I were at the appointment excited to see our baby again.

I remember joking around, laughing, looking at the pictures.  Clueless to the technician leaving the room, getting the doctor.  The doctor hadn’t said anything, probably because I was talking so much.  And then it happened.

Another doctor walked in and said, “How many tumors are there?”

I couldn’t speak, I looked at my husband and we both just started crying.  We were handed a copy of a page out of a medical book.  Tuberous Sclerosis Complex.  Not only our lives changed that day, but I changed.

Our son had rhabdomyomas in his heart.  Tumors that were growing in his little heart.  For six weeks, I was monitored twice a week by high-level Daddy and Bladenultrasounds.  Waiting, waiting to find the right time.  I spent my time scouring the Internet for any information and crying, mourning, worrying, feeling toxic to my own child.  Timing was key.  We wanted him to grow and not have other complications, but not too long or he’d go into heart failure.  At 37 weeks, it was time.  His heart started developing fluid around his heart, a sign of heart failure.

The next day, with about 20 doctors in the room, I had a 8lb 2 oz, 21 1/2 inch long baby boy.  His heart?  Well, I literally squeezed the fluid out!

At 5 months, he had his first seizure and shortly after, I quit my job.

I’d spend most of my time going to doctor’s appointments, playgroups, play dates, swimming, anything that would help my son.

12 months, he crawled.

16 months, he walked.

He went to OT, PT and eventually speech.

bladen before surgeryHe’s had numerous EEGs, overnight EEGs, MRIs and ultrasounds.

He went to a special needs preschool at 2 1/2.

A month before he turned 5, he was potty trained!

Two weeks after, he also had brain surgery to remove a SEGA brain tumor.

He started mainstream Young5 with a para-pro.

Then was diagnosed with ADHD.

He started mainstream Kindergarten with a para-pro.

Then was diagnosed with anxiety.

He is currently in mainstream 1st grade with a part-time para-pro for his anxiety.

And, he has made honor roll every quarter so far!

He has friends.

He is happy.

He is loved.

We still have bumps in the road.  We are currently watching another SEGA brain tumor; he has MRIs every 6 months to monitor.  He has a lesion in his eye, cyst in his kidney, tumors still in his heart, epilepsy, ADHD, anxiety, speech delay and with Tuberous Sclerosis Complex, the list will grow.
However, he’s been seizure and seizure med free for a year and a half.  He is currently unaffected by the lesions, cyst and tumors in his body – meaning, he is not suffering.
Bladen is a tall, funny, handsome, smart, loving 7-year-old boy.  And just as I imagined before he was born, he is STRONG.
Family walk
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Why is Michael Bolton messing with my life?

Why does life have to be so damn frustrating? You know how everything just fell into place with selling the house? Of course it couldn’t be that simple. Also, I’m really struggling not to drop an F bomb in every sentence today.

Everything was going along swimmingly until Michael Bolton showed up at my house. Well, at least some guy trying to look like the 1989 version of him, hair and all. The appraiser of our current property. After a few days of him dragging to turn it in, we all had the distinct feeling he wasn’t going to meet the sale price. We began to prepare for the possibility that we needed to make some more cash appear on our money tree in the backyard. We threw around some figures that it might be. None of those figures was as high as $20,000, but indeed, that is how much he undervalued our house by.

So now everything is a mess. A mess for the people buying our house, for us, for the people whose house we are buying, and the people whose house they are buying. Good old Michael Bolton wannabe has jacked all of us up big time.

Our realtor is fighting the appraisal. Especially since he used a pending sale as a comp (a comp has to be closed) and he did not use one property from the Autumn Lake neighborhood (remember the one I complained about stealing all our buyers because they have the same builder and floor plans and are right behind us?) He is ignoring her at this point and she’s talking to the supervisor. But if we can’t get this one adjusted, we have to get another appraisal, which ain’t free, plus, now we are looking at major time restraints, which mean that to continue we must reschedule the inspection of our new house that we cancelled for fear we’d be paying for it for nothing. We will have to do it without knowing if a second appraisal will do us one damn bit of good.

Basically, I’m making the call to potentially flush more money down the toilet that could go into fixing up our current house if this blows up in my face. My anxiety has me feeling like I could throw up. We’re both frustrated, and Chris is at the point of just wanting to fix this house up. But I can’t let go of the fact that if we can make this work, I think long-term, the new house might be the better solution. But the thought of continuing to flush money makes me want to throw up. What if I’m making the wrong call? If we can’t get this appraisal raised, should I just throw in the towel? To even make a second appraisal work, the buyers would probably have to change lenders, too.

Thank you, Michael Bolton, the appraiser. But a couple days ago I was feeling positive and excited. Now I want to punch someone. You.

Have a lovely undervalued day, sir.

Sweet Dreams? Not Likely.

IMG_3852Now that Connor has finally decided that being on his stomach isn’t so bad, he’s rolling all over the place. If you set him down on one end of the room, I can guarantee you that he will soon be on the other. I wonder if he thinks to himself, man, if I had just realized how fun this was months ago when I first rolled over? He’s attempting to get into the crawling position, too. He also attempted to climb off our bed the other night. Maybe now, with all his progress, the dreams will stop.

I have these repetitive dreams in which he either starts imitating consonant sounds or starts saying words, and others where he starts to walk. They are, quite possibly, the most realistic dreams I have ever had. Every time I wake up from one, I spend a few moments discerning whether or not it really happened. When I realize it was a dream, I always feel profoundly disappointed and sad. But he’s getting there. He’s progressing every day.

1986 Ford Aerostar (USA) p1

Repetitive dreams both fascinate and annoy me. I’ve always had them, but they seem to change with each phase in my life. The ones I most vividly remember from when I was a kid involve cars, specifically my parents 1986 Ford Aerostar minivan. My parents bought the van upon our return from being stationed in Okinawa, Japan. We were headed to Merced, California, where we would take many drives to Yosemite and all over the west. My dreams at that time had me in the third seat of the van, on the winding mountain roads we so often took trips on, but there was never any driver. It always appeared to be just on the precipice of going over, but it didn’t happen. I was helpless in the back with a distinct sense of having no control.

My other car-related dream consisted of me sitting in a passenger seat of car of uncertain origin. Sometimes it seemed to resemble my mom’s 1966 Mustang, which she drove until 1992, when we moved to Atlanta and my parents bought an Explorer to accompany it’s Ford friend, the Aerostar (that damn van wouldn’t die for a few more years, subjecting me to the  humiliating experience of having a driver’s license but not always being able to convince my parents to give me the Explorer for the evening). It’s 2013, and the Mustang is still in the garage buried under the remnants of my parent’s children, who moved out, but refuse to come back for all their stuff. Anyway, in the dream, I don’t know who was driving, but there was a hole in the floor of the car where my feet should have gone. My stuff would fall through, and I would fight not to fall onto the pavement as it rushed by underneath.1016523_581155591950517_1902471778_n

At some point I went from cars to dinosaurs. I can probably blame Steven Spielberg for that. Dream after dream I was in some random house with other people, mostly my age, but not always, hiding and dodging raptors and–whatever that dinosaur was that nailed Newman in the movie. If I could just get to that elusive front door, I would be okay…

Around the time I went to college I started having the worst dreams ever–the paralysis dreams. I have read somewhere  that these may not be dreams, that it’s actually your brain waking up before your body–but either way, it’s terrifying. I would seem to wake up, but was unable to move or even open my eyes. I’d struggle with all my might to move from my frozen position, but it felt like several minutes before I could. In reality, it was probably just seconds, but it did nothing for my severe claustrophobia. Sometimes it would happen during a nap and I’d finally fly up off the bottom bunk, gasping for breath, roommate fearfully inching away from me.

Then came the teeth dreams that persist to this day. I discover that a tooth is loose, and unable to keep from messing with it, it ends up falling out. It has always been just one tooth until just a few nights ago when I lost three. I’m hoping that just means it’s the end of a dream era.

funny-crazy-creative-toilet-bowl-design-28Then there are the dreams of never ending frustration. One is the entirely standard “I have to take a final, but I never went to class and I don’t even know where to go” dream. Not very much original material there, except that I’m always trying to make my way from  my dorm on University of Georgia’s south campus to my class on north campus. I always seem to be on Sanford Drive, past the stadium and near the journalism building. I also have dreams where I am desperately looking for a bathroom, but no matter what bathroom I find, it’s impossible to use it without being visible to the public. Sometimes that’s because it’s just a huge, unisex room of toilets, and sometimes there’s a huge window facing crowds of people passing by. And finally, there are the dreams where I have to move out of wherever I am living, but can’t make any headway with packing. Things just keep coming up that get in the way.

Notice an unpleasant theme here? They’re all anxiety-based dreams. And I have them even when my waking life is in a state of pharmaceutically induced calmness. No repetitive dreams about Bradley Cooper, or winning a million dollars, or getting back into my size 4 jeans. Nope. Just the ones that leave that icky feeling that last through the first cup of coffee.

So tell me, what do YOU dream about?

Tonight I feel angry…

1. I’m not honest enough.

I had a blog once that was painfully blunt. It was my outlet for five years when I battled depression and anxiety. That battle actually went on for more like 10 years. Some friends stuck it out. Others found me too aggravating, and I was aggravating. But they can still go to hell. I’m good now and have been for several years. I was delightfully sarcastic and dark in that blog. Or at least I think I was, in my own little world. I didn’t tell family I had it. It’s long gone since the day a disgruntled employee at Journalspace intentionally sabotaged the server, destroying an entire online community. The one and only time I backed it up was two months prior to that fateful day. I wanted to print it once, but it was over 500 pages. Sometimes it’s hard for me to be completely open in this blog because I use it as a forum to raise awareness for Connor. This means family and family friends read it (although as I discovered tonight, my brother hasn’t been, so he can suck it. I pushed him on a cactus once as children and I’m not afraid to do it again bwa haha). As I get more comfortable, I might open up more on a personal level.

Which brings me to the fascinating world of Facebook. Feel free to unfriend me if my unending lobbying about TSC annoys you. Of course, it’s not like those people would be reading this. I have been blown away by the thoughtful, kind words from people that I haven’t seen in years, didn’t know well even then, and sometimes never even met. Especially when some of the people I spent significant amounts of time with at some point in my life have never cared to say a word to me about Connor.

2. The TSC community needs to go balls to the wall.

I’m not in the greatest mood because the last couple of days I’ve been lobbying like crazy to get votes on behalf of the Australian Tuberous Sclerosis Society. They started out well in the lead. Earlier today another group had a 30 vote lead. Now it’s over 100. I’m about sick of the lack of awareness and touting of various opportunities to get funding for TSC. Once again we are faced with a vote where we aren’t even at 2,000 flipping votes. More like 1,600. Just like the Chase Bank competition a few months ago. Yet I’m part of two online communities, one with over 2,000 TSC people and another with over 5,000. Something isn’t clicking here. I’m angry.

3. Life isn’t fair.

Yesterday, one of the children I know with TSC was rushed to the hospital in the midst of a status seizure. If you don’t know, that is a seizure that won’t stop without medical intervention. From what I hear, it can involve being pumped with so much medication to stop it that they have to be in a hospital because they would otherwise die from an overdose. Connor has never had one, but once again, on the list of increased possibilities with TSC, that is one of them. When I was teaching,I  would, from time to time, have to be trained on a medication that is inserted into the rectum to stop a seizure. I never had a student have a seizure, but I now know that drug is Diastat and that is what it is for. I used to cringe at the idea, never knowing epilepsy would be a factor in my life. Wouldn’t phase me now, though we don’t have any and I’ve never had to use it. Funny thing is that I think that the last 9 months of my life would make me a most fantastic and understanding teacher. Too bad by the time I left, teaching was 10 percent of the job. Garbage paperwork and filibuster meetings were the other 90.

But I feel bitter because this child has been through enough. He’s never been seizure free for a moment. He’s not even four and already lost a kidney. He’s been through enough. Hey, God. Feel free to cut him a break. Feel free to cut a whole lot of babies a break.

Forget TSC. Do you know how many kids out there have a health problem? You don’t. Not unless yours does. Until then, you don’t know. Forget TSC. What about all the other stuff? Once your eyes are open to one, it’s everywhere. Can you believe there is a little girl out there that was not only born with TSC, but is now battling an unrelated childhood cancer? Really? One rare disease wasn’t enough? Did you know cardiac birth defects are as common as 1 in 100? Can you believe that the physical therapist assigned to Connor has a 3-year-old granddaughter battling cancer as we speak?

People are praying everywhere.  But I’ve learned something. Prayer makes the person praying feel better. Don’t get me wrong. I love that people are praying for Connor. He’s had prayers all over the States, Colombia, India and more. Don’t stop. But it gives me this mixed feeling of bitterness and relief. Sure, I want to believe it will make a difference. But I don’t really believe it does. Some prayers get answered. Some don’t. I don’t know that I prefer to believe God is answering some and not others. I’d actually rather believe things are just happening down here. Otherwise, why do some deserve to get answers and others don’t? I’m sick of stupid prayers, too. Do I have the right to call other people’s prayers stupid? Probably not, but if children are sick and/or dying and God is helping you win a stupid ass football game or experience great weather for your fishing trip, I’m gonna be pissed. Is God the reason your wedding went beautifully? No, you got lucky. And if you think God is the reason your centerpieces didn’t wilt and drunk Uncle Jack didn’t embarrass you, you’re a moron. Good luck with the rest of your life thinking God is going to fix all your piddly marriage problems.

I don’t know how people give it all up to God and just believe it is all for a reason. I want there to be something after we die. That’s the only reason I don’t blow it off all together. But while we’re living…what is there? I don’t know.

Infantile spasms–my unanswered prayer

You never know when or if something might spring up with TSC. We came so close after surgery to having some normalcy, but it wasn’t to be just yet. About a month after surgery, on Wednesday August 22, Connor had a follow up EEG. We hadn’t seen any seizures since surgery, and now we would see how he was doing as far as the subclinical seizures that can’t be seen to the naked eye. The neurologist would read the EEG and call us with the results within a week. But on Friday morning, August 24, the moment that had lost me countless hours of sleep and stress happened. We saw his first infantile spasms. I don’t even know how much desperate begging and praying I had done that he wouldn’t develop this complication. Infantile spasms are extremely rare in the general population, but kids with TSC are at a higher risk of developing them. I had watched countless YouTube videos other parents had loaded to help others with identification, so that I would be sure if the moment came. But why so much more concern over this seizure type than what he had before? IS can cause brain damage, prevent children from reaching milestones, and even cause regression. Some people had reported their babies had regressed to a newborn state after developing these, losing any milestones they had achieved.

I had obsessed and obsessed over how things would go when these started. How long would it take to get treatment rolling? How many would he have before treatment started to work? What damage would be done between the moment we first saw them and the moment treatment became effective? One thing I didn’t worry about was whether the drug I knew he would get if this happened, Sabril (vigabatrin). would work. I’d heard amazing things about its effectiveness. I’d even obsessed over whether they would start on a Friday after the neurologist’s office closed further complicating getting treatment started. If these had come out of nowhere, meaning we knew nothing of his TSC, these would warrant going to the ER to get treatment started. But since we already had a plan in place and a neurology team, we were told just to call the office and we’d get the ball rolling. So naturally, they started on a Friday. And the office closes early on Fridays. Did I  mention I had a full blown anxiety attack on top of everything else? Because people were right. They said you’d know the spasms when you saw them. And I did.

Click to see spasms before starting Sabril:

http://youtu.be/VPpuAvNJQ30

It actually worked out well that the office was closed. Instead of going through medical assistants, I was able to directly page the doctor on call. I described what I saw and I could tell my description concerned him. They hadn’t yet reviewed his EEG, so he said he would look at that and call us back shortly. Confirmed. His EEG showed hipsarrhythmia, the scrambled pattern of brainwaves that often (but not always) accompany IS. They called in a prescription for Klonipin (clonazepam) for the weekend to help calm them, and we had the first appointment Monday morning to get him on Sabril. On the bright side, the surgery had been a success. No complex partial seizure activity. We should have been able to celebrate, but I try not to be bitter. Try.

It was a long weekend in which we saw 3-4 clusters a day (his worst day having 8). A cluster is a series of spasms. Monday morning we signed our life away on paperwork due to the fact that a possible side effect of Sabril is damage to or loss of peripheral vision. But as Wendi (the fellow TSC mom who has been there to help us and answer our questions through all this) said, “What good is 20/20 vision if their brain is mush?” I haven’t come across any stories yet about children experiencing this so hopefully he won’t either. Because of the risk, he has to undergo eye exams every three months as a precaution, including an ERG (electroretinography) at Scottish Rite. He has to be sedated and electrodes are used to check his vision. Can nothing be simple? You can’t even get Sabril at a regular pharmacy. It has to be Fedexed to your house.

After about a week and a half we seemed to be in the clear. We went three days with no spasms. Then the eye rolling started. It is now mid October and we are still trying to get a handle on the eye rolling. Presumably, they are milder spasms that are breaking through on the Sabril, but he’s doing well and continues to progress. While the full spasms were going on, he was quieter and it was harder to get a laugh, but he’s back to his giggly self. He underwent an 8-hour EEG to try and determine what was going on. Naturally, he didn’t have a single incident for the entirety of the test. Nope, not until we were in the car on the way home. I was so frustrated I might have driven my car into a tree had Connor not been in the car. But the EEG came back otherwise greatly improved, the hipsarrythmia having cleared up. So this Wednesday it’s back to the neurologist for an hour EEG (yeah right, like we’ll get lucky enough for something to happen in that small window) and an appointment to discuss his progress. I’ve been a little bit crushed that Sabril wasn’t the 100 percent miracle cure it has been for many others. I truly thought it would knock them out completely within a few days, so that we’re still seeing anything has been a bit crushing. That being said, it has immensely improved the situation and allowed him to continue on his developmental path.

What we’re currently seeing:

http://www.youtube.com/watch?v=qttWpEA3UYg&feature=youtu.be