Happy Tuesday! Did you all have a nice 3 day weekend?
I want to repost an email I received from a reader here who is going through a hard time. If someone feels moved to comment in support of her, that would be awesome. More to follow!
Hi Andrea! I cannot tell you how much it means to me that you took the time to respond to my e-mail. And yes, you are very correct. I am struggling right now, not for the first time, but it seems to get harder for me each time we have a major tic flare up.
I’ll tell you our story, and try to abbreviate it as much as possible…
Anthony is currently 11 years old. He started having tics at 6 1/2, some eye-blinking, lots of swallowing, throat-clearing, and eventually (at about 7 years) a high-pitched squeak/squeal, that was really almost was more than I could bear. At that time, we started seeing a psychiatrist, who was recommended by a friend whose son was on the autistic spectrum, with motor tics also. This Dr. recommended we try medications because the tic was so loud and disruptive, and also because Anthony was extremely underweight, and we hoped that meds would help with both issues. After some trial and error, Risperdal seemed to get his vocal tics under control, and also helped him gain some weight, with no other side effects. We floated along for a couple of years after that, we had the normal highs and lows associated with TS, but that horrible high-pitched tic went away, for over 3 years. The other tics were bad, but never as bad as that one. I had hoped it was gone forever.
In November of 2011, Anthony’s throat clearing got pretty severe, and through much research, I learned of an OT clinic at the University of Alabama-Birmingham (we live in rural Western Kentucky) that was administering CBIT, with alarming success. I sent a random e-mail to the director of that clinic, Dr. Jan Rowe, and heard back from her almost immediately, and off we went for a 2 week stay in Birmingham. Anthony’s results were very good. His tics became very much under control, and the techniques he learned were very simple and easy for him. We had a good 6 months after that.
Now fast forward to late July 2012, a week before school starts back this year, and what do I hear? The high-pitched squeak, very quiet and mild in the beginning, but let me tell you, my heart about fell out on the floor. I asked Anthony what that noise was and he said “I’ve been feeling the urge to make a high-pitched noise”. Well, things have gone downhill since then. We started seeing a Neurologist at Cincinnati Children’s in August. Andrew didn’t even start school until a week late because the screech/squeak was so intense. It has come and gone a lot since then, and he has had two of the worst episodes to date with vocal and motor tics. In October, when things were just terrible, the Dr. added Topamax, and it worked almost immediately. Tics nearly disappeared overnight and stayed at bay for about 3 months. Then 2 weeks ago, the squeal came back, and needless to say, it has stayed, and gotten very severe.
I feel like I can’t take it anymore. I have the most precious son, he is brilliant, and beautiful, and my heart is breaking a little more every day as he prepares to head to Middle School next year. It is so unfair and cruel that a child has to suffer like this, and that a mother has to mourn the loss of his childhood to this monster. I feel like the past 5 years have been one nightmare after another, and just when I think it’s finally going to get better–WHAM! There it is again. I try to read all the positive information I can find, especially the articles that say kids reach their tic peak between the ages of 10 and 12. I pray that that’s where we are, at the peak. Things will start to get better soon. He will be OK. But then I hear him, and I see the way people look at him, and I imagine what they are saying about him and I feel like I’m dying sometimes. No one understands. No one else I know is dealing with anything like this. Anthony is strong, he doesn’t have many friends, but he has a few. Usually, he seems unfazed by it all, but then sometimes, I see the hurt in his eyes, and feel the fear in his voice and my heart breaks again and again. He wants a friend who is like him. But there aren’t any other kids with TS anywhere it seems.
I don’t know what to do anymore. Do we keep trying new meds, going to doctors, trying therapy? I can’t accept that this is it for him. I just want his life to be good, and happy, and peaceful. How are you dealing with these things? Do you feel hopeless? Do you homeschool? Is your son OK?
————————————————————————————————————————————————–
My response to follow at a later time. Thinking of you all! Now give her some love if you can!
Andrea
Happily Ticked Off 
I just want to tell you that you are not alone. There are a lot of us moms out here with kids with TS. My son Nick is 12. He started with motor tics intermittently around age 6 or 7, no idea he even had TS they were so mild and infrequent. The vocal tics came out of nowhere December 2011. Loud vocals, HAA HAA AHH. I freaked out, had no idea what was going on…..until we got an appt with a neurologist and he said my son had Tourette’s. I went into grief mnode. I have gone through the ups and downs as you have. Every noise I hear, I have little heart flutters. Your feelings are very, very normal. I just want you to know that. I used to have panic attacks in the middle of the night !! I still stress. I pray a lot too. Nick is on Intuniv. His vocal tics are loud the last few days and I have been on a little rollercoaster of emotions. BUT just knowing that there are moms out here who follow Andrea’s blog and I can talk to for support helps a lot. I just told Andrea earlier, I hope that Nick is peaking !!! I always, always hold onto the peaking around age 12 as well. I had read somewhere that the CBIT you need to sometimes do more than once? I am considering taking Nick to CBIT here in Portland. Do you go to TSA meetings for parents? I have not done that yet but also considering that for support. You can email me any time you want. It is a hard trial to go through so don’t try to do it alone. None of my friends have kids with TS so reaching out on this blog and emails is crucial for my sanity!!!!! Try not to think that this is it for your son…….because many people get better through the teen years. And we have to hold onto that and onto hopes of maybe a different med or different dosage working, maybe supplements. We have to keep trying different things for our kids. It hurts. It really does. But just know you are NOT alone. You truly aren’t. HUGS Leanne
Leanne, that was AWESOME. As you are. We are all in this together! Andrea
Thank you so much for your post. I tried to respond last night from home, but had computer issues and major TIC issues and finally just gave up. This up and down of the waxing and waning periods is just almost more than I can stand these days. I can never relax, even when things are good, because I know it is only temporary. Things are so bad right now, I don’t even know what to do. He has been meeting with a different person doing CBIT when we go to Cincinnati Children’s, but hasn’t had much luck there. Sometimes I just don’t know if it’s worth it or not. especially with this particular tic he has now. It seems to be much stronger than he is. Is your son on Intuniv for tics or for other issues? We have a prescription for it, but I haven’t heard that is helps tics all that much, and have been leery of adding to his other meds.
As for a TS support group, there are none within 2 hours of where we live. There’s no way I have time to go that far. I just have to rely on family and friends for support at this point.
Is your son worse now than he has been in the past? Does he go to public school? I am getting to a point where I feel we are going to have to do something different, I just don’t know what???
Hi –
I forgot to mention in the last email I sent you that my son’s tics did get worse this year at the beginning of school and last year at State Testing. He goes to public school. Just when I thought it could not get more constant they calmed down. His trigger is stress/excitement. Email me back! I am here for you!
Yes, my son is on Intuniv for tics. 2 mg in the morning, and then the generic form (guanfacine) 0.5 mg afternoon (because you can’t cut the Intuniv pills in half but can the guanfacine). My son seems better than he was December 2011 when we got the diagnosis……I believe because of the Intuniv. We didn’t put him on it until June 2012 and only did then because he was SHOUTING HIS WORDS and I can’t even tell you what that was like. Horrible. He waxes and wanes. I was scared to death of him starting middle school. I truly was (yes public school). So I went into middle school before it ended for the year last spring and met with the principal and counselor and let them know I had an incoming son with Tourette’s who would be there in fall. I had printed off information from the TSA website on what it is, and I also printed off an “introduction paper” on my son and paper clipped a picture of him as well so they would recognize him when he came in. I had a friend go with me. I had stuff about him that I thought would be important, like that he loves math, doesn’t like reading much, loves sports and does a lot of them, and of course explained the tics. I also had the name of his neurologist and prescriber and phone numbers on there. That way if they had any questions, they could ask them as well. I actually cried when meeting with them but they put me right at ease and told me they were there for him and wanted him to have the best education opportunities possible. I then went back with him two days BEFORE middle school started to meet again with the counselor and take another tour of the school and met with all of his teachers and explained about his tics. Anything you can do to put his mind at ease, your mind at ease. The counselor told me that if his tics got loud they could make accommodations such as letting him go to counselor office or bathroom to “let them out” if needed. There are several things schools can and have to do to help, like a 504 plan I think. There is a lot about school on http://tsa-usa.org/ He does have loud vocals waxing and waning. Some teachers have allowed him to chew gum in class discretely (so other kids won’t want some) and that helps his vocals, so do gummy candies but I try not to do much sugar. He “disguises” it as well with his words in sentences going up and down in volume. I was petrified of middle school for him. But I did all I could BEFORE he got there which I think is huge. Your mind can take you down some dark, scary roads that don’t even turn out to be true. I think if you met with middle school staff your mind would be put at ease. This got so long…….there is just so much I could say because I have been there, I do understand, and will continue praying for you. I will answer any questions any time.
Hey Anthony’s mother… Where are you from. I am from Owensboro and would love to connect with you. My 5 year old has a tic disorder as well. Carla
Hi Carla! We live in Greenville. I’m in Owensboro very often, actually lived there for 8 years. Many of my best friends live there. We will have to get together!
Hi. First, I just want to say that you are NOT alone. My son tics were so bad last week I had about several panic attacks and broke out into hives from the stress. I took my son to Disneyland (of all places) with my sister and two nieces. I was so stressed out about the tics I’m surprised I didn’t develop one myself! In talking with my sister I discovered that my two young nieces also have their own issues going on. You would never never know this by seeing them. I realized that NO ONE is perfect. Sure, many of us do a good job of hiding it, but the fact is EVERYONE has something. I know how hard this is for you to see your son going through this. I’ve definitely been there. But I really do believe, and know, that things will get better. There is always hope and there are always options. Never give up trying. If one thing doesn’t work, try something else. Your son will learn by example from you how to be strong in challenging times and how to be hopeful and persist despite what others might say or think. These tics don’t define our kids and I believe all of us are going to come out stronger in the end from this. In one of Andrea’s blogs she wrote the following. It’s really helped me at times to feel better and to stay hopeful.
Take a deep breath.
Tell yourself that for just this moment everything is going to be fine.
All you have to do is be your child’s mother – in whatever state he or she is in.
Tell yourself that you don’t have all the answers, but you’re going to try your best to take it one step at a time.
Take a deep breath.
Thank you Carla and Marisa and Leanne. I’m so glad we are all here for each other. Great points, Leanne, about school. Really really true in my case also. Carla, how awesome would it be if you and Sabrina could hook up? And Marissa, wow, you are dead on about everyone having something. SO TRUE! It’s why we need to connect and be honest and out there and show no fear. TS is not a sin. It’s not a dirty word. And what everyone suffers from is life! Let’s do life together. Hey, the next time one of you goes to Disneyland, write to me! I live an hour from there. If time permits, I’d love to meet. (Ha ha.,.. when time permits.)
Hang in there. My son was diagnosed at 4, he was ticcing from age 2 (the only reason we caught it was because it runs in the family so we knew what we were seeing). When his tics get annoying, I try to remind myself that it’s just the tics and he’ll be OK. We haven’t medicated him because I want to wait until it’s actually bad enough to warrant that.
As a mother of a tourettic, I wish I could give you more help, but I feel as lost as you are sometimes. I can’t count the times I have called my mother asking for help with his temper or his clumsiness, and she just smiles, “you and your brother weren’t diagnosed when you were that Young” … we’re breaking new ground,and I think it’s normal for us to feel clueless.
If it helps; my mom who also had Tourettes (undiagnosed until adulthood), taught me “tic Substitution.” It requires concentration, but sometimes in public settings, you can trick your body into substituting a dramatic tic with a less obvious one. It won’t work forever, and you’ll still have to get the tics out later, but it does help a little bit. This helped me turn a loud bark into a soft grunt, at least until I’m in the car.
I remember a time we could tell the second my brother got off the school bus, because we could hear him ticcing from inside the house! He had a beautiful loud duck call that was very identifiable.
And remember that you have a community of people here to talk to that are willing to give you suggestions! Maybe all of them won’t work, but with enough suggestions, hopefully you’ll find something to give you hope of getting through the rough times. Every child is different, every tourettic is different, but somehow we’ll all get through it.
Hi my 14 yr older daughter has gone through the big pitched squel for years! We have done therapy and tried different meds. In fact we hav an appointment for this morning to see her neurologist at Cooks Children
Hospital in Ft Worth!