6yo Son just diagnosed w/Tourettes

[Kristianne]

I am just so overwhelmed right now. I dont know what to do. My son was just diagnosed with "Chronic Tics" but the Dr. said that he meets the criteria for tourettes. He said he wont give the official diagosis of that because there is a chance he'll grow out of that and he doesn't want him to have that as a medical label. I refuse to put him on meds because I fear the side effects are worse than the tics. I homeschool him so I dont have to worry about school. Right now there seem to be 3 different tics at once. A full body jerk, licking the back of his hands and scratching himself (not harshly, but in an innapropriate area). He has in the past had throat clearing and shoulder shrugging. He doesn't have ADD or any learning disabilities with it. Im told "ignore it" or it will get worse, but how do you not say "Thats innapropriate" or "Stop licking yourself" . I just have to sit and watch these odd things and hope nobody notices or makes him feel weird? He is only 6. My husband and I don't have any tics, but I have an aunt and a couple cousins who do. I feel like my life has been turned upside downand I went from having an extremely intelligent, gifted son to a son with tourettes who is really smart. How do I handle this?? Will he start the vocal after awhile? Do I have to worry about there being worse things than licking, jerking and scratching??? Im so lost.

[EAMom]

Just to make sure you aren't missing anything...it wouldn't hurt anything to have a strep throat culture done on your son. Make sure they do the 72 hour culture if the rapid is neg. Even if he isn't technically PANDAS, some people do find tics get worse with a strep infection. He doesn't have to have symptoms (sore throat, fever) to be positive for strep, or it's possible he had strep symptoms a year or 2 ago and he could still be "carrying" strep in his throat.

I also think it is a good idea to culture other family members...to make sure you don't have carriers in the family that could reinfect your child.

[CSP]

Welcome, kristianne

 

 

I want you to know I know how you feel. It is so hard to watch as your child starts acting and doing things you have not seen before or thought were very minor, explode into something very scary. You did not mention if you have tried any diet changes?

 

It is good that you homeschool he may be relieved of some stress that comes with school.

 

Have you done any epsom salts baths? Is he taking any vitamins?

 

Take a deep breath and know you have found a place where everyone wants to help you through this.

 

God Bless,

CP

[kmccoy]

I am just so overwhelmed right now. I dont know what to do. My son was just diagnosed with "Chronic Tics" but the Dr. said that he meets the criteria for tourettes. He said he wont give the official diagosis of that because there is a chance he'll grow out of that and he doesn't want him to have that as a medical label. I refuse to put him on meds because I fear the side effects are worse than the tics. I homeschool him so I dont have to worry about school. Right now there seem to be 3 different tics at once. A full body jerk, licking the back of his hands and scratching himself (not harshly, but in an innapropriate area). He has in the past had throat clearing and shoulder shrugging. He doesn't have ADD or any learning disabilities with it. Im told "ignore it" or it will get worse, but how do you not say "Thats innapropriate" or "Stop licking yourself" . I just have to sit and watch these odd things and hope nobody notices or makes him feel weird? He is only 6. My husband and I don't have any tics, but I have an aunt and a couple cousins who do. I feel like my life has been turned upside downand I went from having an extremely intelligent, gifted son to a son with tourettes who is really smart. How do I handle this?? Will he start the vocal after awhile? Do I have to worry about there being worse things than licking, jerking and scratching??? Im so lost.

 

My son used to lick his palms. In fact, the only tic you mentioned he has not experienced is the scratching in an inappropriate area. I've been in the same frustrated position as you are feeling, and believe me, I wish I could say it will all magically disappear one day, because we're still going through some issues (and my son is 14).

There were days when my son could barely walk across the floor without jerking or twitching a limb and his face contorted in tics. We've been through grunting, sniffing, humming, heavy breathing (through the nose), shrugging shoulders, rubbing noses... I could go on.

I will say that changing our son's diet has helped tremendously (gluten-free, no artificial colors/flavors, caffeine, and sugar to name a few), and we've also implemented supplements.

Hang in there.

[kim]

Kristianne,

 

I wonder if you could gently explain to your son that you understand that he may have a tickle or itch or just a sensation that makes him want to scratch, but others may not "get it," so it might be better if he does this in a way that others won't notice. I know if the impulse is strong enough, he's not going to be able to control it or wait to get to a spot where he can do it unnoticed, but it may be worth getting him to try, only when he's with other kids so he's not teased? If he can't, just remember, your child IS NOT the only one that does this. The licking thing either. Kids chew on their hair, clothes, etc. Also, six year olds spit! I can't tell you how many spit constantly in our pool on the garage floor, sidewalk, wherever! I don't know if their mimicking older brothers or what, but they do all kinds of things that can look a bit odd, and I'm talking about kids with no obvious movement disorders. I also know of a family that had a child who could read everything at about 3 years old, but he was a grabber/scratcher until he was about 10.

 

Also, I'm wondering if the aunt and cousins that you mentioned have any autoimmune disorders or any family history of anything besides tics, such as lupus, arthritis, anything?

[guy123]

Not all treatments have bad side effects. Just stay away from Neuroleptics and atypical neuroleptics if you're worried about side effects. Most of the other drugs have side effects that, if any, usually reduce over time and stop when you come off.

 

Not telling you what to do, just saying that there are some decent medications that can lessen the tics if that's something you want to consider at some point.

 

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