TS diagnosis?

[CARMON]

My son had his first Neuro. appointment yesterday. After explaining all of his symptoms, she said she is leaning toward a TS diagnosis, but is waiting for results from tests (Strep levels and thyroid tests). I had a video to show her because the tics are very minimal now but she said she did not need to watch it based on what I had told her. I have a few questions for all of you EXPERTS:

 

1. My son has been on antibiotics the majority of the past 2 months, first for strep infection then for a sinus infection. Will the antibiotics affect his strep levels?

 

2. He had minor eye blinking 6/03 for 3 months, many vocal and motor tics 6/04 for 3 months, then these 2 vocal tics now which started 2/06. Is this typical of TS? I thought symptoms must be present continuously for 12 months before a TS diagnosis.

 

I am very anxious for test results and just needed some input from all of you!! Thanks so much!

 

Carmon

[Chemar]

 

 

1. My son has been on antibiotics the majority of the past 2 months, first for strep infection then for a sinus infection. Will the antibiotics affect his strep levels?

 

Yes! The antibiotics will have an impact on the results of the strep titres

 

 

 

2. He had minor eye blinking 6/03 for 3 months, many vocal and motor tics 6/04 for 3 months, then these 2 vocal tics now which started 2/06. Is this typical of TS? I thought symptoms must be present continuously for 12 months before a TS diagnosis.

 

Carmon, this is the nature of TS...that tics wax and wane....ie they come and go and vary in intensity and frequency. When the statement is made that the tics should be present for a year (BOTH motor and vocal) for a TS diagnosis...it doesnt mean continuous, or necessarily the same tics....in fact, the waxing and waning is VERY symptomatic of TS as opposed to other tic disorders

 

I am very anxious for test results and just needed some input from all of you!! Thanks so much!

 

Carmon

 

It will be interesting to hear of the results when they come in Carmon.

 

Remember to take a deep breath and dont let all this get you too anxious and stressed out.

 

I know it is hard to be "detached" in any way when we are worried about our kids....but especially if this is TS, the best gift you can give your child is to try to deal with it as calmly as possible and so that he doesnt feel that his tics are causing you stress....that will only make it harder for him.

If this is TS, there are many things you can do to try to help him....but, most importantly is for you to reassure him that he is still your talented and precious child and that....in the words of one of a wise mom from BrainTalk..... "It's OK to tic!"

http://brain.hastypastry.net/forums/showthread.php?t=75510

[kim]

Carmon,

 

Honestly, in the beginning, that diagnosis was so important and frightening to me. Now I could care less what someone calls it. I used to feel that the stigma attached to TS was unfair, since my boys didn't tic like what I had seen on TV. I have since come to realise, what's unfair, is the kids that do tic like what you see on TV, and the sensationalism and lack of understanding surrounding it.

 

My understanding is, as Chemar points out, that vocal and motor tics have to be present for one year. If you shoulder shrug and have a vocal tic for a breif period of time in the same year, and then no vocal, but two motor tics 12 months from the last vocal, you lose your diagnosis of TS? I just don't think I care to waste time, trying to track that type of thing. This comes from a Mom of two boys, that I would consider to be quite mild in the tic dept. though. I used to wish I could say they had PANDAS when someone had a really noticable tic, it sounded better. Shame on me. I have never had their titers tested, but was told my youngest son was a carrier. Neither ever had an explosive onset of symptoms though.

 

If you can rule out other causes of the tic's with this Dr., wonderful, but I hope you will find ways to improve your son's overall health, and in that process help in reducing/eliminating the tics. (I would have taken offense at that remark a few years ago, as I really didn't think there was anything really wrong with my kids health back then.) Afterall, this was just a genetically inherited disorder, with no connection to frequent strep and other illnesses, red hot ears, aching from head to toe, itchy skin/loaded with allergies, bedwetting, food sensitivities, sleep problems, tummy aches, self limited diet. This is to name a few things we have dealt with btwn the two boys, that now, I see as part of a much bigger picture, but the neurologist sure didn't...Pediatrician either.

 

From the stories that have been shared here, I sometimes feel like we could be one virus, infection, environmental exposure, testosterone or histime surge etc. away, from life altering tics, and should that happen, I want to be armed with as much knowledge as possible. In the mean time, like most here, I am trying to make as many changes as I can to take the stress off of the boys immune system. They are both doing great at the moment.

 

So glad you decided to post. I read so many studies that say "further reseach is needed," and then I see the study is from 1992. Maybe our best hope of research is sharing what's working, and what isn't, right here.

 

Sorry if I got off track and did a little vent. It's something that gets triggered when someone says Neurologist, and that probably isn't fair. I hope yours is a little more open minded than mine was, and respects your questions/opinions. Glad to hear she ordered two tests for you, at least! I thought my oldest son's thyroid levels were a little low, although in range. He's 13. Maybe we could compare notes, when your son's tests come back? I get copies of every test that's done now, as they can come in handy and you don't have to wait if another Dr. wants copies.

 

Kim

[Andy]

Carmon, my wife cried herself to sleep for years and I must admit that what you are going thru now is the most difficult part of the whole process. I use the word process for I feel that the majority of TS can be treated. I also feel that TS today is lumped as one group but it has different causes and therefore different treatments and with the word treatments I am saying that there are solutions.

By the way, my wife stopped crying and is now seeing futures for our son that she never dreamed possible 5 years ago and is now amazed at his present. Stay with it. Track down the source and then find that appropriate treatment.

[CARMON]

Well, I finally called and got the Strep and Thyroid test results from the Neuro (I gave up on them calling me) and everything came back "normal". So her diagnosis remains TS. I am still a little confused about this b/c before this, he hadn't ticced for 16 months, but who cares what they call it...I just want to help him in every way I can. At the present moment he has almost no tics at all, I think I heard him do his vocal tic twice yesterday...go figure.

 

Kim, I think you're right about improving my son's overall health and I didn't take offense when you suggested it!! After I read your post I thought alot about how many times he has been to the DR for sinus and allergies. I am going to the Dr this afternoon for a recheck (to make sure his sinus infection is cleared up) and will talk to him about have my son tested for allergies...I'm a little afraid he is going to think I am a crazed Mom who is desperatley looking for a solution (maybe I am!!!). I also echo your thoughts and feelings about the Neuro, I still can't believe she didn't even watch the video that I brought showing the tics he had. If I hadn't been well informed from this website and others, I would have been in an extreme state of panic when I walked out of the hospital with..."I'm leaning toward a TS diagnosis but we will wait and see what these tests say. I cannot predict your son's future, but if the tics start causing him trouble in school or everyday life just call and we can try medication; you don't have to have another appointment. " Then she handed me a brochure about TS that painted a grim future for anyone with TS. I am sure there are great Neuros out there, I just hope I don't have to go looking for one again. Thanks so much for your suggestions!

 

Andy, so glad your son is doing well. Your success gives me great hope!!

 

Chemar, thanks to you as well. I do need to relax and deal with all of this calmly. There are children in this world who have fatal illnesses, I should be (and am) thankful that my child only tics!!

[kim]

Carmon,

 

Thanks for the reassurance about the post.

 

No tics for 16 months? Welcome to the tic syndrome club! I always say tic syndrome mostly to spite the Neurologist who told me about 5 times at one appt. that I needed to accept the fact that my son's had TOURETTE SYNDROME, and clinically he wasn't even right. He had a cow when I brought in the vits. I was giving the kids. He couldn't believe I was considering vitamins instead of increasing the medication.

 

I don't think you are either crazed or desperate, just a Mom that wants to help her child in the safest way possible, and don't let anyone make you feel otherwise.

 

My oldest son recently had a head shaking flair. I asked his Pediatrician for a referral to a chiropractor which my insurance will cover with a referral from primary care physician. Again, I was told no, and not to waste his time with talk of alternatives. He said "we are allopathic Dr.s," and noone in my family has ever been to a chiropractor, and neither have I.

 

Why oh why didn't I ask him if he, or any of his family members have ever been prescribed Pimozide/orap?

I could just scream at the arrogance. I really think it translates into... If the AAP doesn't site this as an approved treatment, I'm liable, and we can't have that. I would gladly sign a waiver of liability, but I guess that's not an option either. They would just rather see you go away. Sad really.

 

Hope things are going well. Look forward to hearing from you when you get a chance.

 

Kim