E's Journey of Tourette's Syndrome

 

I think the last time I wrote about E having Tourette's Syndrome was a brief mention of when he was diagnosed, finally, at the end of 2016, I wrote a blip about it in a January 2017 blog entry. Just to catch you up, after having gone through six years of twenty three doctors in approximately eight different specialties, being misdiagnosed and mis-medicated for ailments and syndromes he didn't have, I finally got to the neurologist who said, Oh, of course he has Tourette's. I knew from reading all the paperwork you sent in, but I needed to see him in person. But yes, he has Tourette's Syndrome. 

E was seven or and in second grade when I finally got that diagnosis and I could have made out with that doctor when he told me. Why? Because as a parent, you can't imagine just knowing something is wrong with your kid for SIX YEARS, but no one being able to figure it out. Then, having different doctors just throwing out what could be some of the most scary possible diagnoses there are, poking and prodding, still getting no answers, no relief, putting your kid through endless tests, medications, appointments, and getting nowhere. It was exhausting. I went big pharma, little pharma, holistic, you name it. I was ready to take him to a sweat lodge or a Salem witch.

Luckily, I knew someone who had a neurosurgeon husband at the time who recommended this particular pediatric neurologist who was the person to see. You want to know what made him different than the other three neurologists I saw before him? His office sent forty-minutes worth of paperwork I had to fill out prior to going to the appointment. Then he actually READ it before we went there. That's all. I didn't feel rushed, or like I had to quickly give him a timeline in five minutes and remember everything that had gone on in six years. He already knew. He was well versed in our history BEFORE I GOT THERE. You have NO IDEA how important that is when diagnosing a problem.

This neurologist is still like that- he takes his time. Granted, I've waited there a half hour or more to see him for our appointment. I understand though. I've been in there for our appointment for forty-five minutes. However long it takes, that's how long he spends with you. There's no just looking you over and sending you on your way. 

Back to E. When E was diagnosed in second grade, he didn't fit the criteria to medicate and we weren't looking to medicate. We just wanted to know what was going on with him. His tics weren't that bad at the time. He wasn't suffering academically, socially and the tics didn't bother him- all three of which are the criteria to medicate. He didn't really have any of the comorbidities that can go along with Tourette's, or anything we really noticed or affecting him, so medication was not on the table. Many time with Tourette's, there is ADHD, OCD, Oppositional Defiant Disorder, Anxiety, Depression, and other things. He wasn't exhibiting any of these other things so we left him be. The neurologist said that Tourette's often ramps up during puberty so just to keep an eye on it and if it gets worse, to come back. 

 He still had tics, and they'd wax and wane. None of the tics really impacted him negatively and nothing was so visible that anyone bothered him about it. His standard response to us was just, these are my tics and they're just part of me. That was that. 

Until around the summer of 2020. Maybe it was the combination of puberty, Covid, the consequences of Covid, I don't know, but 2020 was rough. I don't remember if he was exhibiting more tics during quarantine but he definitely had more irritation and anger from having to quarantine and losing the second half of his fifth grade year in school. He lost all the special things that the fifth graders were supposed to get to do as the culmination of their elementary school time. However, his sleepaway camp, in Maine, was one of the few sleepaway camps that decided to open that summer. He was so happy and we were happy to let him go, even though we were nervous about Covid. They had extensive Covid protocols in place, and he'd been in quarantine so long, we were happy to let him go. 

However, due to so many camps being closed, there were a lot of kids there who were just using his camp as a place-holder and going there because their camps were not opening. There were a lot of new kids and a decent amount of those kids were not respectful of the rules and traditions of his camp. He found this to be stressful and I don't know if this exacerbated his tics or if it was just puberty or both. When he came off that bus at the end of the five weeks away, we could see tics immediately. He was blinking like crazy. He said it was bad the whole time he was there. 

We thought maybe it would just slow down in time at home. We didn't really know what to do. He never really had a visible tic like that. So we just let him be and it did slow down a bit being home. Other tics came and went but they were stronger. Middle school was starting though, which was new, and it was starting in this whole weird hybrid system with him being home every other day doing school virtually. We had a whole Covid protocol school thing to deal with and the tics weren't terrible. Being home half the time actually wasn't terrible for him. He did really well academically, not having to be sitting at a desk all day. He wasn't physically in school with his close friends because they were separated alphabetically, so he didn't even really want to be there in person. The tics took a backseat to everything going on with school and Covid. 

The end of the school year came and it was time for camp again. For the 2021 summer, they were able to go back to the normal seven week session and Ethan was back to full-time. His three close friends were also joining him there for the second three and a half week session so he was really excited. They all went and had the BEST time ever. But when he came home, he was blinking and he'd added a shoulder tic and some others. 

School started, normally. No more Covid protocols except the masking. He had the shoulder tic that with his heavy backpack was now hurting his neck and back. He wanted to go to the neurologist and talk about medication. I made an appointment. 

We went to the neurologist in October and he'd put E first on Guanfacine, which seems to be where most kids start. Of course, for E, it was a no-go. The biggest thing we were concerned about was that it would change his personality. This was horrible. It made him like a zombie. He was so tired, it was like he was sleepwalking through the day. It lessened the tics at first, but it was just exhausting him. Being tired makes his eyes blink more. So we had to take him off it. 

Then he put him on Trokendi XR starting the second week of December. That's basically time-release Topiramate. He started on 25 mg and it started to work. Less blinking. We went to 50 mg per the dosing instructions and thought it was great. We were on a roll! Shoulder tic stops. We're happy! 

Except, cue, just after the new year, his face started to break out to where he looked like he either had some kind of extreme allergic reaction or extreme acne. This is a kid who had almost perfect skin, with maybe a few blemishes in the t-zone here and there, only to look like he literally had a DISEASE on his face. It was devastating. I was besides myself. I bought him a medical grade Dr Gross LED face mask for four hundred dollars that I'll be paying off for the next six months.

E, to his credit, rolled with it. He didn't complain. He was still wearing a mask to school, via state mandate, so it was mostly covered. He just wanted to know that it would eventually go away. We didn't know what it was, whether it had to do with the medication or just unlucky pubescent acne coming on. I was up every night until the wee hours researching what could be going on. We took him to a dermatologist. The doctor didn't know exactly what it was but said it needed to be treated from the inside out, so he put him on a conservative dose of Minocycline. I told the neurologist I was taking him off the Trokendi XR because I saw a photo online of a reaction to Topiramate that looked just like what was on E's face. The neurologist didn't think the Trokendi XR caused it but he said it was fine to take him off to see if anything changed. 

As soon as I took him off the Trokendi XR, of course the tics came back full force. The Minocycline was doing nothing for his face. After two more weeks, we took him to another dermatologist for a second opinion. The new dermatologist took him off the Minocycline and put him on Bactrum. But it's a sulfa drug. B has sulfa allergy. We just had to hope E didn't also. But you wouldn't know for about two weeks on the drug to see a reaction. The doctor also shot E's face up with cortisone wherever he could. E was a trooper. He looked like a horror show and still had to go back to school. 

The mask mandate ended just as E started the Bactrum. I think having the mask off is probably good for his skin too. The Bactrum started working within a few days! We were so happy. We put him back on the Trokendi XR also because the tics were too much for him and we determined that it didn't seem to be an allergy to it. Whatever is on his face didn't go away in the three weeks he was off the Trokendi XR. With the Bactrum, he was finally starting to look like himself again after about a week and a half. We felt like with the face getting under control, we wanted to get the tics under control too, if we could. 

The Trokendi XR though, is not without it's own problems. E started the Trokendi in December and he'd had a bit of an attitude problem. Again, I chalked this up to puberty and being a thirteen year old boy. We'd spoken to him about it at one point, around when we took him off it, and he'd been better. We didn't put two and two together. When we put him back on, he'd gotten irritable again and had some surprising issues with some of his teachers. All of a sudden, I realized, I'm on the same medication, basically, for migraines. I'm kind of irritable. Maybe the Trokendi XR makes him more irritable and that's why he is more emotional and irritable and it isn't simply just puberty and hormones.

I'll take the irritability but now we're at two weeks with the Bactrum, clearing his face up, which is my main issue right now, and E said, oh, but I have this rash....

This past Sunday, the day before I'm supposed to take him for a follow up at the new dermatologist, he shows us the sulfa rash he has all over his arms and chest. It just looks like heat rash, not hives. So we say, ok, just take a Benedryl and we'll show the doctor. Of course, the Bactrum was actually working so B and I are devastated. 

I took him to the dermatologist this past Monday and he said that as long as it wasn't hives, it wasn't dangerous, and if he could push through it with antihistimines, it would be okay. But, of course, as of today, the rash was worse, and he can't. He has to stop the Bactrum. He'll stop the Bactrum, wait a week and then go back on a stronger dose of Minocycline. I'm just so afraid that if he stops the Bactrum, his face will get worse instead of better. I'm so nervous for him to be on nothing for the next week.

This whole thing- Tourette's, puberty, acne or whatever it is- it's all a dance. It's exhausting. It's like having a hose with a hundred tiny leaks and having to figure out where they are and how to fix them without making more or worse leaks. I don't know what's really interacting with what. I clear up tics, I maybe make acne. I clear up acne, I make a rash. He's on pills and he's irritable. I can't just let him tic because the tics can be painful. Or kids bother him about the tics, or the acne. I can't just have him be irritable and be an asshole to his teachers.  

It's a lot. But I wanted to share where we're at right now. People are always surprised when I tell them that E has Tourette's. Most haven't noticed. It's funny, when it's your kid, you notice every tic. Just like when it's your baby, you feel like your baby has the loudest cry of all. He has it, it's just part of his story, and most of the time, he doesn't even care. It probably makes him more empathetic to other people who have stuff out of the norm going on with them that makes them different or unique. I just wish it didn't have to impact him negatively in middle school- because we all know how middle school can suck without having differences like Tourette's and acne. 

Dr Gross LED mask

Ethan's Sock Drive for the Homeless

Ethan is doing a sock drive for his Bar Mitzvah service project. I said I'd post it here since there is a link to an amazon wish list if anyone wants to donate socks by purchasing that way. Here is the flyer he is giving out door to door and the link to the wish list- 

Ethan's Sock Drive on Amazon

So, if you'd like to donate and you're local, you can donate in the bin at our house, or you can have them sent directly from Amazon to us and he will bring them to CUMAC the week before his Bar Mitzvah.  THANK YOU!

CUMAC (if you want to read more about it, click the link- it's an amazing organization)

Bad News and Empathy

 

Our plates are pretty full these days with bad news. It's everywhere we turn. 

Ukraine civilians are being bombed out of their country by a madman. It's the largest refugee crisis since World War II. You can't turn on the news without seeing the atrocities going on there.Which also means, it's here. It's not just there. We have Ukranian people here. Friends, family, people who have friends and family. And what happens there doesn't just stay there. It affects us here. You can try to stay in your bubble and ignore it if you so choose, because that's what people are good at these days, but everyone will be touched in some way or another by what goes on globally.

We also have plenty of our own bad news going on here in the United States besides for what is global adjacent. Covid is still here. People are still getting sick. While Omicron might be a lighter form of it, I'm literally watching on the news right now how there are long term effects of getting any form of Covid that are coming out now. 

Then, we have Texas and Florida who are fighting each other for the worst states for the LGBTQia population and those who love them. My husband and son can joke all they want but when I say that these are two of the worst places on the planet, where everything bad happens, I'm not kidding in the least. You couldn't give me a free house in either state. I certainly wouldn't raise a kid in either one.

I'm horrified and disgusted to say that yesterday, the "Don't Say Gay" bill, which prohibits any discussion about sexual orientation or gender identification in the state's primary schools, passed in the Florida legislature, which means it gets to Governor Death-santis's desk, and he's expected to sign it. (He may have already- I don't know) Probably with glee. 

And in Texas, there is just an unrelenting assault on trans rights. I personally know parents with gofundme accounts and social media pages dedicated to getting their families out of the state before possibly facing persecution just for living. 

This doesn't sound much different to me than having to flee countries for simply being Jewish. 

Make no mistake, if you still vote GOP in any election, you're saying you don't give any F's about anyone but yourself. There is no such thing as fiscally conservative when people are fighting for their lives. When kids die from this law being passed, just know, and you've voted GOP anywhere, for any reason, you have their blood on your hands. So if you like to fancy yourself pro-life, just be aware, that won't be the case. Those who are truly pro-life actually care about the lives already in existence. Not just those of the unborn.

I also have to laugh, or cry, about all these people who have been going on and on about how disgusting it was to make kids wear masks all this time. How abusive it was, how unfair it is that they couldn't be a spectator at their kids sporting events, and maskless on top of it, when people are literally fighting for their lives. In Ukraine, in Florida, in Texas. People mocked kids and adults over a thin piece of cloth, they bitched and complained, when others are sleeping on concrete, with only what they could carry, wondering if they'll ever see their spouse or kids again. As their homes, school, livelihoods, friends, and families, have been bombed into oblivion. People bitched about freeing the smiles when others won't or don't have the freedom now to even discuss who they are, or live as whom they are. 

Please, with your masks. Seems pretty stupid, the absolute outrage, over masks, when there seems to be much bigger problems in the world. If you think masks were abusive, disgusting, & taking away freedoms, I certainly hope you're never in the position to have to flee a country on a moments notice. Or fear legal retribution and the detonation of your family, just because you support your kid's gender rights.

I read an article this morning about the correlation between teens feeling the pressure for perfection and dying by suicide. One of the things mentioned was teenagers being required to do hundreds of hours of community service, where the author noted, quite sarcastically, that obviously forcing kids to do all that service must produce empathetic adults. 

So I wonder, seriously, how DO we produce actual empaths. It seems that's what we're lacking. How did we get here? We have entitled adults care more about kids being freed from masks than we do about kindergartens being bombed. There are parents who care more about a kid possibly reading about rape in a book than someone actually BEING raped. Some people care more about what pronouns people use than how kids are feeling, whether they're suicidal, or whether they're comfortable in their own skin. I don't see how the parenting from humans like this is going to create any wealth of caring or empathy. All I see is people looking for a fight over control- how to control others. I don't see people caring how to best look out for all the greater good, I see people only looking out for themselves and only caring about what affects them.

How do we get adults to take their puritanical blinders off and stop trying to drive us straight into the Handmaid's Tale? What are these people afraid of? Why are we going backwards? I'll tell you one big reason. Because when there is too much progress, white supremacy and bigotry have too much to lose. They're going to hold on with everything they've got. 

Donate: Nova Ukraine