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Please offer your advice to a mother in need

I want to repost an e-mail I received from a reader 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!

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6 Comments

  1. Please contact me! I would love to talk to you from one mother to another!

  2. Hi, my name is Ann and I totally feel your pain. My son was diagnosed with transient tic syndrome when he was 12. He is now 27 and got married two months ago, He is my only child. At first he was put on many different meds. All had horrible side effects. Then a new neurologist suggested a new med at the time and it was Topamax. It was a miracle drug. He was tic free for a few years. (A few small tic’s every so often) but 90% better. Over the years all was pretty good! Sadly, before the wedding we started seeing his neck tic as well as the blinking. Again. We thought after the wedding it would get better… It hasn’t. His wife is very concerned and I am beyond devastated. We are back to square one but this is the worst he has ever been. His head is constantly moving. He is going to a new neurologist in two weeks. Not sure he can wait that long. No matter how old your child is, when he hurts, a mother hurts ten times more. Any questions please contact me.

  3. My son is 8 and 3 months ago he started having tics. First was muscle stretching in “unnatural” way, specially chest and hands, then weird facial expressions kind of fake smiling, eye blinking, throat clearing and making “coughing” sounds. We saw cardiologist, ENT doctor, pulmonologist, Eye doctor, Psychologist (they checked X-Ray, ECG, Spirometry test). First, doctors considered allergy, then asthma, thwn refer us to neurologist. First neurologist said it’s ADHD with possible seizure, second neurologist said it may be Chorea (an abnormal involuntary movement disorder, one of a group of neurological disorders called dyskinesia).
    My son started having some issues at school, A/B student became “D/F” student. He couldn’t finish his tests, he couldn’t follow teacher directions, he couldn’t focus at all, and he was more frustrated and his tics became worse and worse… Other kids started asking him why he acts “weird”, why he is doing “weird” sounds… he didn’t want to go to school anymore…
    My world is falling apart… I got 3 kids: 2 girl (14 and 9) and my son. They all were healthy, happy, no problems at all. And what happened to my son made me so angry and depressed because no one could diagnosed what is it and why its happening to him!!!!!
    3 weeks ago 2nd neurologist (doctor specialize in ADHD and TS in over 30 years) prescribed him a medication “Topiramate” 25 mg at bedtime. First 2 weeks looks like nothing changed but then in 3rd weeks almost 3/4 of tics disappeared. We went to this doctor 2 days ago, he said he can see great progress and want him to take double dose now: 25 mg at bedtime and 25 mg in the morning. In 2 month from now he wants to see him again…
    I don’t really feel if its good, I am happy to see my son feels better, but giving him medications without knowing the cause its kind of scary for me…
    After all different doctors visits, I feel like I need to trust someone so I trust this doctor because of his experience… When I asked him if it can be TS, he said its too early to diagnose…
    I also went to school to talk to teachers about my son, I explained them everything, so they can help him feels better at school, and decide if he need some special education at school.
    My son feels better, you can see him more rested and relaxed…

    I just wanted to share our story…
    Lidia

    He wasn’t able to do his homework by himself,

    • Hi, I would like to ask you about your son now with his tics. Are they completely gone?
      My son 7 years old has moving face and tongue tics. Please let me know because we started with the same Topiramate 12.5 mg.
      Thank you

  4. Our son’s name is also Anthony. He was diagnosed at 5 with tourettes. His tics have varied over the last two years. We love him no matter what, but we have feared teasing at school. I keep his teachers informed of any new tics (he gets a new tic every so often, without getting rid of one) . We do not feel helpless. We know we will have to help and be there for our son every day. We will keep ourselves and others informed about tourettes. Most importantly love him and keep looking for ways to help him.

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