Tag Archives: seizures

Guest Post – Mixed Up Mommy

November 10, 2013 Rebecca Gaunt 2 Comments

Infantile Spasms are not diagnosed early in many cases due to a lack of knowledge, even by physicians. I am not putting any blame on physicians, but the fact is that this is so rare, most practicing pediatricians simply won’t even see a case in their career. Parents are almost always blindsided by such a diagnosis. In some cases, a family has warning of a symptomatic onset of this epilepsy. All scientific evidence indicates early diagnosis and aggressive treatment gives the patient the best chance at the not only stopping the seizures, but the best developmental outcome as well.

The only thing I have obsessed over more than my son’s tuberous sclerosis complex diagnosis was the possible onset of infantile spasms. Since we had Connor’s diagnosis shortly after birth, we were in an uncommon position of knowing to be on the lookout for this rare and catastrophic seizure type. We…

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Parenting, Tuberous Sclerosis

Relieved after talking to the neurologist.

October 11, 2013 Rebecca Gaunt 6 Comments

Feeling much better this morning after an appointment with Connor’s neurologist. We were dismayed to hear about changes on the ERG, but I really freaked out yesterday when his medical assistant mentioned in an e-mail that he wanted to discuss the ketogenic diet. The ketogenic diet is no joke–read here–it involves hospitalization to start it, measuring everything he eats and it’s more extreme than Atkins. I have never wanted to do the keto diet and have always hoped it would never even be a consideration. Don’t get me wrong, it’s not off the table and I understand why people do it, and some have great success, but it just seems like a nightmare to me. I hope to find seizure control another way.

I was really freaked thinking we were going to be told Connor MUST come off the vigabatrin immediately and that the keto diet would be on the immediate horizon. Thankfully, not the case. While a change on the ERG is reason for concern and close monitoring, our doctor said to also take it with a grain of salt. Many parts of the country, people aren’t even doing these because it’s somewhat unreliable at this age. It can’t tell you how much vision is being affected, if at all, only that the retina isn’t responding quite the same way with one of the wavelengths or something–honestly I don’t understand it well enough to explain it. Sometimes, later tests go back to normal and it was just an anomaly, and yes, sometimes the peripheral vision is affected, but the positives of the meds outweigh the negatives. In his experience, most of the time a kid has gone off due to changes on the ERG, they ended up back on it because it was simply the most effective med for them. Unfortunately, keeping the seizures at bay must take precedence over perfect vision. If it was an issue of blindness, I’d be much for freaked out, but hopefully, if he does suffer any loss to peripheral vision, he will learn to compensate.

We do have to decide if we go back for another ERG in a month, or wait the standard three months. He didn’t seem to think it was worth the sedation to go back in a month, though. Obviously, we could have to face decisions over again if we continue to see changes, but hopefully that won’t be the case.

As far as the keto diet goes, he brought that up more as a possibility, and he felt the modified Atkins diet was equally good (and less insane–my words, not his). We will revisit that in a few weeks after we see what happens with the increases in Onfi. We are also finally weaning Keppra- the drug that has been the unchanging constant through all this. We’re not sure it’s really doing anything, so we’ll monitor and see what happens.

He also said down the road, there are other drugs we haven’t tried, though he can’t vouch for them when so many have failed. And we can also revisit surgical options as well as VNS. VNS doesn’t thrill me, as I haven’t seen as much success with that online as I would like for such a major surgical/implant intervention. What is VNS? Read here. That being said, like any treatment, one person’s fail is another’s miracle.

Please cross your fingers for the vigabatrin/Onfi combo and no further change on the ERG!

Last night, we attended a meeting with a Met Life rep regarding financial planning for special needs. The truth is, we don’t know where TSC will have Connor as an adult. Maybe he’ll be doing great and self-supporting, but we just don’t know at this point. So it was time to look into how to plan for the possibility that he may not live entirely independently, possibly because of cognitive issues, or maybe because of health/epilepsy issues. Thank goodness, we did! It’s pretty easy to complicate your child’s situation and have no idea you are doing so. If you have a child receiving any government benefits, such as Katie Beckett or if they are over 18 on SSI, if they inherit anything adding up to over $2,000 they can lose their benefits! Who came up with that number as a cutoff? Seriously? And can so easily happen by accident–savings bonds purchased for them by a relative, naming them directly on a will, putting them as your life insurance beneficiary, or just not having a will and they automatically inherit. Once those assets are spent, they can reapply, but those of us who have applied for such things know how nightmarish it can be. And losing them even temporarily can wreak havoc. The presenter shared a story of a woman in her 50s or 60s living in a group home supported by Medicaid. She had been there for a long time. When her parents passed, they had no will and she inherited what they had, which wasn’t much. She had to move out of the home, and within a few months the assets were spent. She could then reapply, but her spot had been taken. She lost her parents and her home.

We will have to have a special needs lawyer help us with a special needs trust that will protect him from anything like that. Anything that he inherits must go to the trust. That way, if he’s receiving any benefits they won’t be affected. Don’t worry, the government gets theirs. This kind of trust is taxed at one of the highest rates, in case you were worried they’d run out of barricades for our national monuments.

Join us for a meeting with new Atlanta TSC clinic director, Dr. Wolf!
Sunday, November 10, 2013
2 – 4 p.m.
Mount Vernon Baptist Church
850 Mt. Vernon Hwy NW
Sandy Springs, GA 30327

Dr. David Wolf will be spending his afternoon meeting the local TSC individuals and families of the TS Alliance of Atlanta/North Georgia. Join us for this valuable opportunity to meet both Dr. Wolf and other local TSC individuals and families!
There will be light refreshments available.

RSVP to Becky pin.the.map@gmail.com

Parenting, Tuberous Sclerosis

Vigabatrin may be causing changes on the ERG.

October 9, 2013 Rebecca Gaunt 9 Comments

I got a really aggravating phone call yesterday. It was the opthalmologist’s office after they reviewed Connor’s ERG from last Friday. Connor is supposed to undergo a sedated ERG every three months (description here) because he is on vigabatrin- a powerful seizure medication with the potential side effect of loss of peripheral vision. He was on it for nine months previously for infantile spasms. We weaned him off and began to see increasing seizure activity–complex partials, which vigabatrin is also used for. So we went back on it. Connor had two ERGs the first time around. Being that it is sedated and requires an IV, it is no simple procedure. It is handled by day surgery. So we didn’t adhere to the every three months suggestion. We chose not to have an exit ERG when we stopped because the first two ERGs showed no change or issues. We figured at that point, why put him through that, when it won’t change anything? Even if there had been some changes to his vision, he wasn’t having issues and it can’t be corrected. We had no reason to think there were any issues anyway. While there are definitely some stories of kids with some loss of peripheral vision, the stories of no issues seem to outnumber them. That is purely anecdotal by the way–not evidence based–just my experience online. So we don’t know if this occurred last time we were on it, or in the short amount of time this round.

I was so sure we would never have an issue. But the eye doctor reports “minor changes” likely related to the vigababtrin. The neurologist’s office referred to them as “early signs” that the vigabatrin is causing changes. That’s as much as I know. Connor’s primary neurologist is out of the office until Thursday, but we actually already had a followup scheduled Friday morning anyway, so at that point we will have to discuss our options.

Connor is not going blind, to be clear, but nobody wants to see any damage to their child’s vision. But I’m so frustrated. We’re seeing improved seizure control since restarting vigabatrin. Control we couldn’t get with Keppra or adding Onfi, and Trileptal was a total fail. Phenobarbital was used early on, but needed other meds added and is not the drug I want him on anyway. He was on Dilantin for a bit, but when his levels were checked they were nothing, like his body just ate it up (He’s currently on Keppra, Onfi and vigabatrin).

The issue was a no-brainer when we were dealing with infantile spasms. I wouldn’t have even considered taking him off, even with vision loss, because of how dangerous those are. But now that it’s complex-partials, I don’t know what to do. I mean if nothing else will control it, we need to stay on it and hope there are no further changes. He can’t have seizures all day long. But can there be something else that will work?

I just hope his neurologist has a strong idea of what direction to take, because to be honest, I don’t feel equipped to make the call.

It always has to be something. Suck it, TSC.

Ordinary Life, Parenting, Things to Do Around Atlanta, Tuberous Sclerosis

It would be easier to come up with titles if I could stay on topic…

October 7, 2013 Rebecca Gaunt 1 Comment

I love a good sunburn with such ridiculous lines, that most of my wardrobe will fail to hide my stupidity. But rather than take responsibility for my failure to apply sunscreen anywhere but my face, I will instead blame the organizers of the annual Miller Lite Chili Cookoff for moving it from the tree-filled shady location at Stone Mountain Park to the the black asphalt parking lots of Georgia International Horse Park in Conyers. No trees. Just asphalt. I will give them credit for a larger space that made it easier to walk around, but I’ll push people out of the way if it means the return to the sheltered haven by the park.

We like to go every year, but we missed last year–the final year at Stone Mountain–for a most hilarious reason. My mom went to the ER. Yes, I just referred to my mom going to the ER as hilarious. You read that right. Ok, it wasn’t hilarious at the time–at least not for a few hours–but it’s an interesting story. It had been a stressful few months with Connor’s time in the NICU and diagnosis, and that morning, another stressful issue (nothing to do with Connor or us) came to light. I called and talked to my mom about it that morning. About an hour and a half later, we arrived at my parent’s house to drop Connor off. This was the first time we had ever come over that my mom didn’t come out to meet us at the car (something I often like to point out she never did when it was just me coming over). When she finally came downstairs, she looked surprised to see us. “What are you doing here?” I thought she was joking. I reminded her they were babysitting while we went to the cook off. “Did I know about this?” she asked, confused.

Forgetting Connor was coming over? Yeah right. Something is weird. She usually only blocks out memories that involve me as a teenager. She looks at Connor and says, “Oh, aren’t you cute,” in a way that indicates this is some random baby mysteriously propped in a chair in her sunroom. My dad and I look at each other. Then she asks why we’re there again. And when we answer her, she clearly doesn’t remember that we just told her. She also can’t remember what she had for breakfast, where they went for breakfast or what neighbors they ran into while they were there. She’s asking the same questions over and over, and clearly isn’t forming any new memories. And me? Great. I realize when I called her that morning I gave my mom a freakin’ stroke.

So rather than downing 900 samples of chili, we head to the ER. My mom keeps asking us the same questions over and over. She’s on a repetitive loop. Then she declares, “I’ve had a stroke! Self-diagnosis for you!” She repeated that roughly 647 times by the time we reached the hospital, and thought she was figuring it out for the first time every time. Once we reached the hospital, since she wasn’t able to retain new memories, she kept thinking she just woke up there and continued asking the same questions. It was the weirdest thing because she was looping like a tape recorder. Same comments and questions, same intonations, same jokes. Blood pressure was off the charts. Scans, an MRI, and a few hours of me battling the urge to video this insanity with my phone, and they come back with an answer. No stroke. In fact, everything looks great. Diagnosis: transient global amnesia. Lasts roughly 24-hours and can be caused by a stressful event. She will completely recover, and it is unlikely to reoccur. It is also extremely rare. Yay us and our predilection for weird rare medical crap. It’s particularly weird because though you forget a big chunk of time and events, you don’t forget the basics, who you are and the basics of your life. So sadly, I was unsuccessful in convincing her she had promised to gift us $25,000 and turn over the keys to her ’66 Mustang.

So then the rest of the day could be spent repeating what was wrong with her when she would ask every three minutes. “Well that will teach you to call and give me bad news again!” I heard that 87 times before we left the hospital. At this point I was embracing the hilarity of the situation since I knew I hadn’t caused irreversible damage to my mother’s head. Regrettably, I did not record her at all. Though you can find YouTube videos of other people with this, and they pretty much sound the same. Hilarious that is. Especially hilarious, since she was going home with my dad who would have to field the questions for the next several hours. I did write a bunch of stuff down in a notebook though so my dad could tell her to read it when she looped.

Some people will do anything to get out of babysitting.

We’re pretty settled in the new house at this point. The dining room is still a mess, but pretty much everything else is in place. Chris has informed me he will not be meeting my two-month deadline to paint the entire house. He seems to think a year is more appropriate estimate for completing all the rooms. “But Becky,” as my friend Cat said, shaking her head “you stay home. Can’t you paint?” HAHAHAHAHAHAHAHAHAHA! Have you met my husband? I paint like I vacuum, it would seem. Willy nilly without leaving straight lines. I am but a hander-upper of necessary supplies.

Connor now has his very own playroom downstairs. It is chock full of fun and goodies for him, and secured so I can get stuff done. So what does he do?

How am I supposed to get stuff done when he looks at me like that?!

Then his favorite toy, his jumperoo, finally gave out after extended use past the weight limit. It was a sad day. This is how he uses it now:

I also decided the room I initially chose to be his was too small, so Chris got the honor of disassembling the crib again to move it. I’m delightful to live with.

Connor recently had a 30-minute EEG at his neurologist’s office, just to check in on the general state of things. Lo and behold, he actually had a seizure on it. Seizures are famous for not cooperating with EEGs, so getting one on a 30-minute test! Whoa. His neuro now believes what we have been seeing are complex-partials, pretty much what we’ve always battled, aside from infantile spasms. They are decreasing since putting him back on vigabatrin and hopefully we’ll get the just-right doses of vigabatrin and Onfi soon. He had his first ERG in quite some time on Friday. I’m not sure if he’s planning to be Miley Cyrus for Halloween or if he’s expressing his distaste for the boring peach-colored gown (where are my rockets?!).

I’m still on my fruitless quest to get a detailed report from Boston on his MRI back in August. We have the basic results of no growth, but we’re also supposed to find out how many tubers, SENs and specific locations. So I will continue on my 9,000 phone calls quest that every person who deals with a medical issue knows so well. Why does everything have to be so hard with hospitals, pharmacies, insurance, doctors… The only doctor’s office that I feel comfortable with response time is his neurologist. But I have to play games with:

the hospital in Atlanta

now apparently the hospital in Boston (which saddens me cuz I gave them props earlier this year)

insurance

the ophthalmologist

the pediatrician

the mail order pharmacy

I hate when I like a doctor, but staff makes life hard.

My parents just adopted two kittens, and they seem even more fascinated by Connor than he is with them. And he loves kitties.

Sunday was my birthday. A lot has happened in my 23 years. (Shut. It.) Pretty mellow affair that started with brunch with Chris and my sister-in-law Donna and dinner at my parents. It ended festively while I was in the shower that night and heard Chris yelling “Becky!” Oh my god. This is it. We’re going to the ER. Connor must be having a status seizure–something we’ve never had to deal with. I run down in my towel…nope. He vomited. Everywhere. On himself. On Chris. On the floor. On the new couch. So emergency bath time and snuggling. He was fine. Fortunately it was only once and he was perfectly fine before and after. Which makes me wonder if this is the stomach of a toddler issue or a vomit seizure. Either way, he’s great now and expending his energy on keeping me from doing vomit laundry.

At least he’s helping spread Halloween spirit.

If you need me, I’ll be following doctor’s order somewhere:

My sister-in-law knows how seriously I take my health so she gave me this bracelet for my birthday:

Happy anniversary to my parents!

Reminder:

Informational meeting on financial planning for your special needs child this week! Wills, estate planning, a chance to ask questions, etc.

Thursday, October 10 at 7:00pm

Mount Vernon Baptist Church 850 Mt. Vernon Hwy NW Sandy Springs, GA 30327

Please RSVP to me at pin.the.map@gmail.com.

Parenting, Tuberous Sclerosis

Remember when I gloated that we were done with vigabatrin? Oops.

September 10, 2013 Rebecca Gaunt 7 Comments

Note: So I wrote this blog yesterday, but was unable to post it. “Why is that?” you probably didn’t ask…well, you know how Comcast never wants to come out the day you need them, or they give you a window of say, 4 to 8 p.m. and show up at 7:59? Well, try canceling your service. THAT they can do not just on time, but BEFORE you asked them to. Way to make a random burst of efficiency another aspect of your subpar business model. There is an update at the bottom from this morning.

It was a grumpy weekend. We’ve been packing the house, getting ready to close on Friday, and I’ve not been able to summon any energy or interest in the process. Plus Connor’s seizures have been increasing. We were concerned a couple weeks ago when he had eight in a day. Then this past Thursday he had 13. Earlier this year we went a couple months with nothing! We had this beautiful period of time when we didn’t even touch our —Seizure Tracker App— What is going on? Then this happened:

See that? Do you? 50 seizures in one day? What. The. Hell. Was. That.

A few possibilities. 1. We weaned him off Sabril (vigabatrin) a couple months ago and maybe that was a mistake? They’ve been increasing ever since. 2. Since Trileptal failed, we have been weaning him off and starting Onfi. Maybe he just hit an all time low of meds in his system as a period of time of low trileptal as we weaned and low Onfi as we started intersected.

Maybe there is still a chance Onfi will work? I hope so. We will obviously go back on vigabatrin if we have to, but I would really rather not with all the eye appts and ERGs that go along with it due to the risk to peripheral vision.

I called his neuro on Saturday when this was happening as someone is always on call. Everything always happens on weekends, doesn’t it? All those months I laid awake in fear of the onset of infantile spasms, I thought, I know they will start on a Friday night. They did. Thank God, that was how I discovered they have someone on call on the weekends. This weekend, however, it was someone covering for them, not his regular neuro or his partner that diagnosed him and also knows Connor well. He had me administer Klonipin 2x daily to get us through the weekend. I just got off the phone with Connor’s neuro and we discussed the concern of whether these could be spasm related, so I sent him the videos I was FINALLY able to get this weekend –these seizures come on so fast it has been a pain– and he went ahead and increased the Onfi. Coincidentally we have an appointment with him tomorrow morning, so hopefully we can figure out a plan. My guess right now would be that we’ll probably give Onfi a little longer, since the seizures haven’t been AS crazy as Saturday and if we don’t see a change soon, back to vigabatrin. That’s my guess anyway. We’ll see in the morning.

I just don’t want anything setting him back. He’s doing great. He has gained so much in the last couple months. He only just started crawling and now he’s pulling to stand. Last Thursday in physical therapy we worked on showing him how to pull himself all the way up because he was only getting as far as his knees. The very next day he did it twice. And once again, we owe it to Emma Cat. His relentless pursuit of the most tolerant cat on Earth inspired him to try and get up the stairs. Getting mobile has really triggered his curiosity and he wants to get into everything. We don’t need a bunch of seizures slowing him down!

We also got his MRI results back from Boston. No growth! He has no SEGAS fortunately, and his SENs remain small. I’m waiting to receive more feedback on the tubers. Now that’s he older we should be able to get more details on the number of tubers and their precise locations. Hopefully this will help us target any potential issues he might have. For example, if he were to have one in his speech center, we would know that language development needs that much more attention.

The weekend wasn’t all bad though. My first planned event as the Chair of the TS Alliance of Atlanta/ North Georgia was Sunday. It was fun and I learned a lot about planning an event…haha. Some big lessons learned. But thanks to all who came out!

The movers come tomorrow to get us out. We will be staying with my parents in the meantime. My plan is basically, walk in the door, hand Connor to them, go to bed, wake up when Chris has unpacked everything in the new house.

What could go wrong with that?

Update: The house is empty! I felt kind of sad to see it…our first family home 😦

We had our neurology appointment this morning. After seeing the video, he felt they were epileptic spasms, and they clearly started to surface after he was initially weaned off vigabatrin. So back to the vigabatrin we go. Oh well, anything to stop the seizures. As much as I don’t enjoy mixing the packets (why can’t this med be made stable enough to come pre-made in liquid form!) or the regular eye appointments, it’s the ERGs I really don’t want to deal with. Ugh. But you gotta do what you gotta do.

So the plan is to start that, stay on the Onfi, and once we see a difference we can start weaning him off Keppra, one of the meds he’s been on almost since birth.

Tomorrow morning I get the joy of taking Connor to a 7:40 am eye appointment. It was to be his final required eye appointment due to his vigabatrin prescription. Now I get to hand him the paperwork to start all over again.

As Adam Sandler would say, “Whoop dee doo!”

Medicine medley (trickycustomer.com)
Why our American Medical System is broken. (phoebeholmes.com)
The Cure (tsmum.wordpress.com)

Boston TSC Study, Travel, Tuberous Sclerosis

Which is the bigger scam? Appraisals or the TSA?

August 27, 2013 Rebecca Gaunt 4 Comments

The last couple weeks have been rather exhausting in good ways and bad ways. Good = trip to Boston. Bad = corrupt housing market.

Might I start by saying I hate property appraisers? I think I said that in my last post. It is still true. Despite the fact the houses by the same builder with the same floor plan have recently sold around the $200k within walking distance, our appraisal at $185,000, $20k below the agreed upon sale price will stand. We were already taking a hit from what was paid. And despite our complete makeover of the lawn from dirt to gorgeous grass, the addition of granite in the bathrooms, a thorough de-brassing of fixtures, a new water heater and a new roof, it’s still worth $25k less than it was appraised for in 2007. So dear, dear appraisers, yes, we all know you were oh so shady in your role (I say role, as banks and irresponsible buyers should not go blameless) in helping destroy our economy, and I’m so glad that you can continue to screw up people’s lives by swinging to other end of the spectrum and undervaluing everyone’s properties, as you once over valued them to line your pockets. I despise you and your industry. You have undervalued our house and taken money from us that should be going towards my child’s needs. I wish upon you a lousy life.

Yes, we are going ahead with the move. It will hurt in the short term, but is best for the long-term. We had to heap much fertilizer on our money tree in the backyard to make it possible. Closing is in two weeks.

In brighter news, Connor is crawling like a fiend. He’s truly my child as he keeps making a move for the kitchen island wine rack and tries to steal one of my bottles. I couldn’t be prouder. He also knows that I have toys to sell stashed in the laundry room, and despite the nine kajillion toys strewn about the house, he wants the ones in the laundry room. Emma has nearly lost her tail twice in his deadly jaws. I’m desperately trying to make him understand that bathrooms are grody mcnasty and that he should not follow us in there.

We went to Boston last week for his third visit as part of the TSC study. He also had his annual MRI at Boston Children’s. Everything went smoothly, and I can see why Michael Jackson was hooked on propofol after an extensive period of time trying to wake Connor — not in a scary way, he just really wanted to keep sleeping. It’s waaaaaay better than my melatonin. We haven’t gotten the results yet. Hoping for no growth, of course.

Connor’s veins continue to be elusive, proving that it isn’t just Atlanta that can’t get a vein in this kid. He always leaves looking like a retired pin cushion.

We’ve pretty much walked all over Boston at this point, so we just revisited some favorite areas.

We watched Harvard's sailing practice on the Charles River. — We watched Harvard’s sailing practice on the Charles River.

We visited the only Curious George Store in the world at Harvard Square.

Connor demonstrated that high chairs work best when you sit backward.

I love going to Boston. I actually think I could live there in spite of the cold. The only negative aspect of the trip was the idiotic TSA. I’ve actually been feeling more kindly toward this waste-of-taxpayer-money organization as having a kid has miraculously made flying easier in a way. We get to skip the security line in Atlanta, they do a quick, problem-free scan of his milk, food and meds as they are oversized liquids and we get to board first. I even get to bypass the full body scanner and walk through problem free. But this time, coming home, my sixth flight with Connor, suddenly things change. They pull his diaper bag as usual due to the liquids, but this time, because of them, she tells me one of his parents must submit to a full-body pat down, as well as have their personal bag searched. Chris is already on the bench putting his shoes on, so in complete surprise, I begrudgingly volunteer to do so. Two questions: 1. What the hell does having oversized baby liquids have to do with arbitrarily patting me down and searching my purse? 2. What is the point of letting the parents choose? If we are indeed carrying a bomb, obviously the one who isn’t wired up is going to volunteer. She informs me that if I get all his stuff in 4 oz containers, I can avoid this. Hey pharmacist, I’m gonna need all Connor’s meds in a series of 4 oz bottles, please, and make it snappy! I inform her that I have flown with him six times and this is a first. No response. So apparently bottles of Enfagrow in your bag = right of government agency to stick their hands up your crotch. And they wonder why we don’t thank them for their service to this country. That and the fact that they’ve never stopped an attempted terrorist attack. That’s the job of the other passengers on the plane.

Anyway, our plan to try name brand seizure meds in hopes of better control did not work. We are now weaning off Trileptal and moving on to Onfi. His seizures have been increasing, and though they are short and he recovers quickly, he drops suddenly. He’s face planted on the floor three times now. We have to stop these before he walks. Please let Onfi be the one.

Please click the link to the right for Top Mommy Blogs. It helps me climb the rankings, so more people find my blog and learn about TSC!

Parenting, Tuberous Sclerosis

Guest Blogging at the Crumb Diaries!

July 29, 2013 Rebecca Gaunt Leave a comment

Check out my guest blog at the Crumb Diaries.

Parenting, Tuberous Sclerosis

When you put electrodes on my head, can you see how annoying I think you are?

June 19, 2013 Rebecca Gaunt 2 Comments

“Oh good. I get a day off from having crap on my head so that I can have crap on my head.”

Connor doesn’t talk, but I imagine that’s what he would have said yesterday if he could. A whole day without his cranial remolding helmet, but he ends up with electrodes and gauze everywhere. And you might think, oh, poor Mixed Up Mommy. Having to spend eight straight hours in a doctor’s office while Connor has an EEG. Actually, I’m pretty sure nobody is thinking that, but that’s okay. As long as it doesn’t involve a check-in at Scottish Rite, I’m fine.

Oh. You weren't real clear, Mommy. Thanks for nothing. — Oh. You weren’t real clear, Mommy. Thanks for nothing.

This EEG was a little more challenging now that he is mobile. There was a lot of rolling, tangling and attempts to play with cords. But considering only one electrode ever fully came off his head, and I was able to reattach it, I consider it a victory. We read some books, played, I worked on an article and we took a long nap together on his jungle mat.

The EEG was just a check-in to see how things are going since we are starting to wean him off the vigabatrin. His spasms have been controlled since last September, so we’re hoping there’s no more need. We introduced Trileptal a couple weeks ago to see if that, along with the Keppra, will knock out the complex-partials he’s been having. It seems to be helping as they have become fewer and farther between. He had none yesterday, naturally. Overall, he’s doing well in the seizure department. Even though he’s not totally free, the few he does have are 10-20 seconds of pursed lips and staring and he snaps right out of them. I think the EEG will look as normal as it can — meaning his EEG will probably never truly come back normal due to the tubers, but that’s okay as long as nothing is going on that negatively affects him.

Aren't you going to share your Dunkin' Donuts, Mommy? — Aren’t you going to share your Dunkin’ Donuts, Mommy?

So sweet to share your chicken noodle with the EEG machine.

That's cute that you big people think you can keep my head wrapped in gauze for an entire day. — That’s cute that you big people think you can keep my head wrapped in gauze for an entire day.

Ordinary Life, Parenting, Tuberous Sclerosis

Anybody Want to Buy a House?

June 4, 2013 Rebecca Gaunt Leave a comment

Connor had a good report from the physical therapist today. She was excited to hear he is pivoting in the sitting position, and he was also much more cooperative in making transitions. We’re at a point where he can maintain a crawling position, rock back and forth in it, and reach out for objects, but he needs assistance getting into it. He’s getting better at sitting back down on his own. He can also maintain a standing position, but needs assistance transitioning into that position as well.

Working on his physical therapy just got a whole lot more aggravating since we put the house on the market this weekend. Decluttering the house meant moving all his PT equipment into the garage. Making myself do PT with him is already hard enough–not because I don’t love spending time with him–but because therapy isn’t exactly what you envision doing with your child when you decide to have one. Going to get something from the garage really shouldn’t be that big of a deal, but that’s me. Not to mention, my attention span has become so awful that a million things distract me on the way and I forget what I wanted.

I spent a good portion of today cleaning scuffs off walls and doors and trying to turn the shower floor back to a non-vomit inducing color. Plan of attack for the shower: Chris laid a coat of Comet with bleach on it at 6 a.m. and every so often I run some water and re-cover the surface. Twelve hours of this should do the trick, right? This is pretty much the last resort.

A couple did a drive-by on the house and I got down on all fours ninja-style to watch them watch the house. My life is pretty exciting.

Yesterday we got so carried away working on the house, that changing Connor’s diaper slipped our mind for an extended period of time. It wasn’t until he was bouncing in his jumperoo, and the downward motion would cause a cascade of urine to gush out onto the floor from his drenched diaper. I’ve always been grateful that the state of his diaper has never been a source for fussing, but I’m realizing that with my easily side-tracked state of mind, it would actually be beneficial if he’d give me the heads up once in a while. Yes, I really just blamed my baby for over-wetting his diaper.

I’m very rarely seeing any seizures with eye movement, but we’re seeing 1-2 a day in which he slumps down, turns his head to side, puckers out his lips and stares. They last 10-20 seconds, and he snaps right out of it.

Fingers crossed we start getting people looking at the house soon. I really hate making the bed for nothing…

Since I didn’t post much during May due to hosting so many guest bloggers, here are some highlights from the past month:

We went to Florida to visit Chris’s parents.

Connor went on the swings for the first time. The swing was hot so I finally got to prove to Chris that it IS good to keep “crap” in the trunk.

Connor rode up in the cart for the first time.

We watched Cousin Cody play baseball.

We had coffee and watched trains with my parents in downtown Norcross.

Seriously, it’s making me sad that nobody is entering my giveaway. You don’t want to make me sad, do you?

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

Focusing on Today

May 31, 2013 Rebecca Gaunt 1 Comment

Day 22 of Guest Blogging for TSC Awareness Month

By guest blogger Cassie McClung (Houston, Texas)

My husband and I learned that we were pregnant in the late spring of 2007. Married just two years, we were a bit surprised, but honestly thrilled beyond words. We had a ton of fun preparing for our new addition, even despite the fact that I was so horribly nauseated for the first five months that I lost 12 pounds. Her development, however, was always right on track, and every test and check-up went well. Just a month before her due date, we decided it would be fun to get the new 3-D ultrasound photos that we kept seeing at the doctor’s office. We ended up trying three different times. Every time we went, the baby had her arms up around her face, completely covering every feature. The first time was kind of cute. The second time was a little frustrating. The third time I asked the technician, “Isn’t it a little unusual to have her arms up every time?”

“Yes,” she said, flat out, “I’ve never experienced this before.” I remember my heart went into my throat. Could something be wrong? The doctor dismissed my concern later, telling me not to worry. I tried not to.

The next thing I knew my delivery date was around the corner but the baby was in breach position, so a C-section was scheduled. In late January of 2008, we were blessed with our beautiful daughter Avery. The surgical delivery went well, but within an hour of her birth, I was surrounded by a number of doctors with very serious faces.

They were concerned because it appeared that our precious newborn was having small but frequent seizures while under observation in the nursery. They bombarded me with a million questions at once. “Was she seizing in utero?” is the one that still stands out. WHAT?? What does that feel like? This was my first pregnancy. She kicked a lot, does that count? Were there other signs I should have noticed? I was stunned. Immediately, the doctors sent her away to a bigger hospital with a higher level N.I.C.U. I remember my delivery doctor turned to me and said, “I’m sorry,” before walking out the door, not to be seen again.

My husband and I were absolutely shocked and terrified.There was no holding, cuddling or bonding. I tried to recover quickly from surgery, all the while imagining my baby girl across town under the care of who knows who, doing who knows what. Complete and utter torture. This was when I started thinking about the genetic condition that runs in my husband’s family. We were told previously by family members that we should not worry about it…that it was basically no big deal. Then I heard someone at the hospital say it for the first time. TS. Tuberous sclerosis. We hadn’t a clue.

I broke out of the hospital early and rushed to the N.I.C.U. I couldn’t believe how tiny she was, hooked up to so many tubes…all of the nurses knew her name. My Avery. They already knew so much about her. They’d spent so much more time with her than I had. It felt so strange. At first glance, she looked pretty and pink, sleeping peacefully like a typical newborn. And then I saw it. All of a sudden, she puckered her little lips, turned bright red, and her right arm extended straight out. It faded quickly, but there was no mistaking that she was seizing. Nothing could ever have prepared us for what happened next.

We were shown into a large meeting room across the hall. A doctor sat across from me and five or six med students and residents sat next to her. I’ll never understand why they were invited…why they needed to sit and watch this intrinsically personal experience unfold. They never spoke, just watched. The doctor slowly explained to us that Avery had been born with a rare genetic condition called tuberous sclerosis. Benign tumors grew willy nilly in her brain and heart. She had many of these growths in the left side of her brain, which were causing massive abnormalities and resulting in seizures. She also had a few in her heart, but they were not affecting her breathing, and we were told they would eventually disappear. Small victory. The ones in her brain, unfortunately, would not just go away.

So that’s when Avery’s brain surgeon appeared. Yep, my daughter has a brain surgeon. Surreal. And that’s when we found out that our newborn needed a radical brain surgery that was meant to end her seizures, or she would not survive: a hemispherectomy. The two sides of the brain would be disconnected from each other, and large portions of “bad brain” would be removed from the left side. Before we could even begin to digest this information, the surgeon went on to explain that he had never performed this surgery on a baby less than nine months old, and most of his colleagues had told him he was crazy. But that it was her only chance.

This is the part where I have to pause and breathe. Because more than two years after the fact, I can still feel the residual effects of this man’s words pulsating through my mind and body. I can still close my eyes and remember the breath-stealing sobs I cried as I said goodbye to my week-old daughter and heartbrokenly handed her to the nurse that would take her to the operating room. We waited hours and hours, hardly breathing, wondering if we made the right decision. It was, and Avery did beautifully. Her strength amazed us. It still does! She was in and out of brain surgery three times in her first month of life. She came home after one month and five days in the hospital, eating on her own, cooing and wiggling. The seizures had completely stopped. We had renewed hope, renewed faith. Her future appeared so much brighter.

We were told by the doctors that there was really no way to predict her future as far as cognitive and physical ability; but the upside was that the earlier the surgery, the better– i.e. giving the “normal” side of her brain time to take over tasks that the opposite side can’t handle anymore…and we couldn’t have done it any earlier!

Avery actually needed two more brain surgeries, at three months of age and at five months, before the seizures stopped returning. She continued taking Vigabatrin (Sabril) for the next four years as a back-up, in case they did try to come back. It was the only drug that had ever slowed down her seizures before.

For four years, Avery thoroughly enjoyed a total break from seizures, as did her parents. We were busy attending to her other many needs, like the fact that the surgery had resulted in the left side of her body being extremely weakened (hemiparesis). No one ever mentioned this side effect before surgery. It was then, and is now, our biggest challenge among many. When she was still not sitting up by herself at 18 months and after lots of therapy, we knew we needed a lot more help. We were lucky enough to find an amazing, private special needs preschool that had experience with children just like Avery. They taught her to sit and scoot. They taught her sign language, how to drink with a straw, and how to use a fork and spoon. And they continue to teach her now. I don’t know what we’d do without these amazing teachers that love my daughter for exactly who she is, and not what she lacks.

Sadly, this past year the seizures returned. We were devastated of course, but not surprised. We knew it was a miracle that they stopped for as long as they did. They are under control again now with new meds: Onfi and Vimpat. She seems a little more tired now, but overall a happier disposition.

Walking is still our biggest goal. The left side of her body just doesn’t want to cooperate! Although still extremely developmentally delayed, her cognitive skills continue improving. No words yet, but lots of sounds. We have three PT’s, two OT’s and two SP sessions every single week, on top of her school “work.” Avery works harder than any kid I know, and she does it with a smile. She has taught us endless lessons about love, grace, and the simple joys in life. Almost two years ago, we were blessed with another sweet girl! A healthy, TS free little sister, who dotes on her older sister.

As many special needs moms have said before me, it’s impossible to focus on the future right now. In order to get there, we have to focus on today. Today she is healthy, happy and working as hard as she possibly can to reach her potential. What that is, no one knows, but we will move heaven and earth to get her there.

Please check out Cassie’s blog at www.abubslifeblog.blogspot.com

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Living in Atlanta, loving travel and watching my son kick tuberous sclerosis complex's butt.