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[DoriansMom]

Hi Everyone

 

I am new to the forum and new to the possability that our son has TS. He has a long history of many issues, he turned 6 in August.

We noticed vocal tics almost a year ago, but had no idea it was a "tic".

we just thought he was being silly by sniffing all the time and noticed he would do it when he was anxtious or excited.

Now that we are reading books on TS we realise that he has had motor tics for quite some time, but again, just thought he was being silly by pulling on his pants. In October we noticed that he was turning his head from side to side and sniffing so I asked him why he does that and he told me that he likes the noises and patterns that it makes. For us that was a huge red flag so we set him up with a PDoc to get her opinion on what he is thinking. Needless to say we were shocked when she suggested TS and suggested who we should see next.

We are now doing the waiting game to see a Nurolagist and it can be about a 3-6 month wait.

 

I was wondering if anyone can share with me what to expect when we meet with the Dr. will he right away want to prescribe drugs or are they usualy open to alternatives?

I was hopeing that they would do an allergy test or rule out everything else.

 

Any thoughts or comments would be greatly appreciated.

 

oh, and does anyone's little one get really red ears by the end of the day? My son has always been getting really red ears when he is tired for as long as we can remember.

We have started taking him to a chiro but my husband isnt convinced, any thoughts on that?

[CSP]

Welcome,

 

The last appt. we had with our neuro. he did say we could try ALT. we were shocked. Expect the dr. to sugg. meds, but do ask about Alt.

 

My son did get red ears a lot when he was younger, and we think it was allergies but don't know what was the allergy. He has a huge peanut allergy that the dr. said he would have many allergies because of that.

 

You could start getting appt. with allergy dr. so you feel like you have started something and not waiting all this time for the neuro.

 

Have you started cleaning out his diet?

 

cp

[Chemar]

Hi and welcome

 

I wish I could give you encouragement about the visit to the neurologist, but most of us have found them on the whole to be closed minded and that you will likely either be told to come back in a year if tics still persist or offered one of the meds

 

They will likely tell you that alternative treatments and all the other stuff we discuss here is "quack"

 

And they are also quick to dismiss any other cause of tics and add a TS label, even when a wealth of information is now available on the many *other* conditions that can mimic TS ranging from allergies to infections and a whole lot in between

 

TS is a genetic condition. Do you have a family history of tics, OCD etc?

 

Has your child had strep, especially related to when the tics started? Any other known infections?

Was there any correlation between the start of the tics and childhood vaccines? other shots?

Any known allergies? Have you tried eliminating any food groups one at a time to see if any improvement? ( eg dairy or gluten?)

 

Our admin has written a very helpful reference book to help with all this that you may be interested in

http://www.latitudes.org/book.html

 

and here is an informal survey on potential things that can trigger tics

http://www.latitudes...ng_triggers.htm

 

I have a link in my signature below on what we have done over the years to help my son

 

hope that helps a bit to get you started on your quest for info

[Cj60]

Hi,

 

Like the others, I think it would be a good idea to see if you can find an alternative type dr. while you're wating for the neurologist. The "Finding Medical Help" link above was very useful to us.

 

Regarding the red ears, it's something on my radar, as well, as our son has them once in a while. It could be related to a problem with the body's ability to process phenols. Here's one link that provides a quick reference to the issue.

 

http://webcache.googleusercontent.com/search?q=cache:mu6PBwcniTwJ:www.wrongdiagnosis.com/p/phenol_sulfotransferase_deficiency/intro.htm+red+ears+phenols&cd=1&hl=en&ct=clnk&gl=us

 

And another: http://www.danasview.net/phenol.htm

 

If this happens to be an issue with your son, a daily bath with epsom salts will probably help. (It's likely to help a little even if there is no phenol issue).

 

Finally, I would check with your son's pediatrician and see if he objects to supplementing magnesium. If he says ok, we use a supplement called "Kid's Calm," one of the Natural Calm products. He gets a teaspoon it in the morning and another in the evening.

 

Good luck,

Chris

Edited October 27, 2010 by Cj60

[DoriansMom]

Thank you for all the replies and suggestions.

 

We are expecting the Neurologist to push the drugs, which we want to avoid. But I will keep my fingers crossed that maybe we will get one that isn't so pushy. We also have plans to tell him/her that if he can't help us for him to recommend us to someone who can.

 

Dorian has a long history of health issues. We felt that he wasn't quite "right" as an infant and decided to delay all his vaccinations till he was 6 months. After his vaccinations the only thing we noticed was that day he refused to sleep, other then that nothing has stuck out in our mind. We didn't do prevnar and we live in Canada so I think our vaccination list is a bit shorter then what is suggested in the US?

We did MMR at 2 years of age but he was experiencing many reoccurring ear infections about 6 months before that. He suffered from tonsillitis and ear infections a lot and was on antibiotics about 5 times before we decided to have surgery to take his tonsils and adenoids out when he was 3.5 years old.

We noticed aggressive motor tics when he was about 4, with him going to the bathroom up to 40 times per day. At that time we had no idea that this was a tic until just recently reading more on tics on the Internet. The urination tic never did go away but always came and went in severity up until the spring of this year. At that point he changed his tic to sniffing and pulling up his pants and both of those have been around since the spring.

I have made an appointment with his GP to get some blood work done and to also see if we can get into see an allergy specialist.

I am slowly taking out gluten from his diet and hopefully we can get it out completely by the end of next week. We are not big dairy eaters, don't drink milk and Dorian only has about 1 serving of cheese per day.

We discovered Daiya cheese, which is amazing btw, you should all try it, It is soy free and gluten free.

 

I am not sure if there is a family history, I never knew my fathers side of the family. My husband has mild OCD but it doesn't effect his life to the point of medication.

I am going to try those epsom salts in the bath(if he will take baths) he has been into taking showers lately.

 

The waiting for all these appintments and results is the hardest part. I would love to have a simple answer but I have a feeling things wont be so easy.

He has always had a hard time with going to school and has seperation anxiety to top it all off. But once he is there he is fine and his teachers say he is doing very well. we are glad for that because he can be a handfull at home that is for sure!

 

Thank you for letting me vent, I think I will continue to have so many questions along the road.

[Cristo]

I went with my son to two neurologists. I also live in Canada. They both responded to my inquiry about pandas. One of the neurologists is a doctor at Sick Kids hospital, and he said that if my son continues to get strep often, then we should consider giving him antibiotics prophelactially (how do you spell that word?) which was surprising to me, since all other doctors have been dismissing pandas altogether. He said that otherwise, my son presents with a tic disorder. The other neurologist is from Trillium, and he said that he only believes that kids should get antibiotics when they have active strep infections. He said that he believes that there have been cases of pandas, but he will only treat active infections. He went over the critera: sudden onset etc. He said that my son has a tic disorder, and not to worry about it, because all kids have quirks. It took a few months to see both neurologists (one 4 months and the other 5 months). Back then, my son's symptoms were really bad.

 

The neurologists asked about school, and I completely forgot that during the time when he suddenly changed, his teacher reported that my son had changed...and what happened to the boy she knew. I told both doctors that he is an excellent student, which he is, except during that time, when he started going downhill with writing, and was always talking to everyone in the class, and even wrote on the desk. Odd things for him. He was also afraid of things then.

 

Anyways...try to remember everything. Because it has been so long, I had forgotten a bunch of stuff, and when I was asked, I only remembered some. After reflecting on both appointments, I realized that I had missed some things. Anyways...they both asked about family history of anxiety tics and ocd, when his tics started, strep infections, and school. They asked if it affects his daily living. They did neurological tests on him. That's about it.

 

They won't push meds in Canada, unless it is severe and is affecting your child's life at school and everywhere else.