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Newly diagnosed son — needing empathy and help!

I am a new parent to Tourette Syndrome. My 7-year-old son was diagnosed with TS on November 15. He developed a loud cough in September. I took him to his pediatrician, and at that time he was diagnosed with cough variant asthma — a lung disorder that presents with a cough in children. He was given steroids and breathing treatments.

After taking the meds, the cough never completely went away, but had decreased enough that he could return to school without it being as disruptive.

In mid-October, the cough returned with a vengeance. It was happening repeatedly, but with forceful body jerking. I took him back to the pediatrician, and we were referred to an allergist. After seeing the allergist, we found out that he is allergic to trees, grass and dogs. We live in Tennessee, where the pollen is horrible!!!!

He was placed on more meds and breathing treatments. A week after seeing the allergist, he seemed to get worse to the point that I took him to the emergency room. He was coughing repeatedly for 2 hours. The docs there just administered more breathing treatments and instructed us to return to our PCP in the a.m.

When we got to the pediatrician the following morning, she instructed me that he needed to be homebound from school because the cough was that disruptive, and he had already missed three weeks of school from the cough and fatigue associated with the cough. She also told me that she was referring me to a neurologist. I’m a nurse, so when I heard the word neurologist, I immediately went into panic mode!

After getting labwork, CT scans, MRI with sedation and an EEG, the diagnosis was discovered. It felt like a bittersweet moment. I was happy and relieved to FINALLY know what was making my baby boy sick, but sad because of what society thinks about TS and the challenges that he may face.

His case is extreme according to the neurologist since he’s unable to attend school because of his vocal tic. We’re trying to get him on the best medication regimen to decrease the tic so he can return to school. I’ve researched to find a support group in my city without any success.

I need to interact with people who can empathize with my situation. This noise just came out of nowhere. My family and I are all adjusting to our new situation. It’s difficult to go out in public because of the stares. The noise started as a cough, then went to a sneeze and now it’s a VERY loud yell.

Oh, I forgot to mention that when this all first happened I had a 1-month-old daughter. She’s 4 months now, and she’s a little more calmer now when he makes the noise. Some days are more overwhelming than others since he’s home with me and I have my daughter at home also.

So, again, I’m searching to interact with people that can share their experiences with┬áme and vice versa.

0 Comments

  1. I’ve had tourette’s for the better part of 50 years now and from my experience the most important thing you can do for your son is give him plenty of support. I was diagnosed very late in life (during my late thirties) and I never had any family support whatsoever—this during a time when tourettes was very poorly understood to begin with—and looking back, had I gotten family support growing up it would have made a huge positive difference in my life.

    Also, I’ve taken many meds since being diagnosed and in my case the most effective med with the most tolerable side-effect profile has been Clonidine.

    I hope what I said helps.

    • I live in Pennsylvania, and use a virtual school, Connections Academy. I started off using another virtual school, but they were not real good with his learning needs. We ended up having classes seven days a week and it killed me. I was happy to find Connections Academy and they got right on his learning needs. His IEP was great, not like the first school that kept promising to adjust his IEP.

    • I think the woman lives in Tennessee, so not sure about Florida. I think all states now have virtual schools. Even have virtual schools that are attached to the public school system. Either way it is a lot of work, and I am only home schooling him because school was just to much on him. He would come home most days and be in bed by five, and sleep til the next day. Tourettes is a lot of work on them.

      • Diane, when you say it’s a lot of work on “them,” do you mean the students with Tourette or the teachers? I’d imagine it’s the students, but you never know. I definitely like the concept of the virtual school, and I took the liberty of looking up one in Tennessee online. Latonya should visit http://www.k12.com/tnva. They have one!

  2. Hi, my son who is now twelve, was diagnosed at four years old with tourettes. It can be really hard at times, as you will see. Sometimes the tics are crazy and other times they calm down.
    I have been home cyber schooling my son for the past well this is my fifth year. I found that school tired him out and made the tics worse. Also the stress of school made the tics worse. Seems like stress and tired bring the tics on and on.
    One thing I also noticed is that, when Cordell has an issue…wether it be a cough or allergies. His tics seem to come on with his medical issues. IE, allergies are bothering him, then he gets cough tic or crazy sniffing tic. One time he scratched his cornea at school, then he got a tic where he could not stop moving his eyes back and forth.
    Tourettes can be so tiring for them. Its like exercising even when you feel like you can not go on anymore. but you do go on, because you have no choice.
    Cordell also struggles with intrusive thoughts, and does things before thinking. Even saying things that are not censored. Not cursing, but well, if its an ugly baby, then he tells them Ohhh thats an ugly baby.
    I have found that they best things to do is, not to get upset over the tics, not to get upset over the noises and try to help him find the humor in them all with him. Make sure he gets a lot of sleep, as the tics will be worse when he is over tired or stressed out. Try to remember that some tics might tell him to do stuff, that he normally would not do. And they get depressed over some of it. I always try to listen and listen and not react. Things get better…
    You can write me at dieann63@aol.com if you want to.
    I hope you the best on your new journey.
    Diane

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