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what would you do?


Tattoomom

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My husband and I usually agree on everything, well, almost everything but we are not seeing eye to eye on this.

 

Our ds has always been a spirited child. We went through terrible 1, 2's, 3's & 4's with him. He was highly aggressive (hitting, crying, tantrums) yet highly sensitive (hated tags in his shirt, loud noises, crowds, new places) He seemed to outgrow a lot of these issues with time. And then came the tics around age 5 1/2. He had a throat-clearing tic that lasted from Dec 06-Feb 07. He was very sick at the time it started, with a cold/cough, and we thought it was just from being sick. He then replaced the throat-clearing with rapid, heavy eye blinking. The eye blinking was way worse than the throat-clearing ever was. He started out blinking all.day.long. This is the tic that always comes back. He's waxed and waned, and even been completely tic free for 6 months at a time but then they seem to come back. He developed a new eye roll tic in September, had swine flu in October and ever since, he's been ticcing bad. He started throat clearing, blinking, finger flicking/touching finger tips (looks like he's trying to flick something off his finger), neck tic (looks like he's trying to crack his neck/stretch), he wipes his hands on his pants or the couch constantly, and I see him stretch his mouth a little bit. It's like he had an explosion!

 

I'm worried and not sure what to think. My husband claims he doesn't see half of it! :) We have no confirmed family history of TS. We do have a whole lot of autoimmune disorders though.

 

He had strep titers done back in 2007 when he had his first explosion of tics and was negative. Not sure if I should explore PANDAS as a possibility again?

 

I think we should find out why he has this burst in tics, but dh doesn't think we should. He thinks ds is fine and says, "So what if he has tics. They're not hurting him or hindering him in anyway."

 

I guess I just look at the body as a whole and feel like we should seek out the reason this is happening. Am I crazy for thinking this way?

 

Should I pursue anything? If so, what? Where do I begin?!

 

Will it hurt him to just let it go and chalk it up to tics/TS if it possibly could be PANDAS? I lean towards PITANDS since he seems to get hammered with tics after an illness. Or is that typical?

 

We just started him in therapy last week for his anxiety/fits he has. The Psychiatrist put him on a low dose of Zoloft. He noticed the tics (he has tics as well) and it bothered me a little because he kept talking to ds about his tics, and I'm sure that only made it worse. He sees the therapist again in a couple weeks, should I request he not speak to ds about the tics? It was kind of strange because he kept telling us, come 17-18 years old, they will be gone, yet he himself was clearly ticcing in front of us. I felt a little bad because I asked him about his tics and he looked rather shocked that I noticed.

 

Anyway, getting back to my original reason for posting...

 

Would you do anything in our situation? Does this sound like TS?

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Hello,

 

First I understand your frustration. My son's tics bother me way more then my husband. I really think that is quite a common theme I have seen on this forum. Typically it is the mom that takes charge in figuring out answers. I don't quite get why it does not bother the men as much as the women.

 

I also wanted to mention, I looked for the posts but could not find them, that I read two posts on this forum of children who tested negative for strep/Panda's but in the long run they found out they were actually postive for it. So I would certainly explore that area if that seems to be a realistic possibility.

 

I am so sorry for your discouragement. I had put together my theory as to what was ultimately going on with my son's tics and why I thought Daniel was reacting to food chemicals a while back. I had put together my theory as to what was going on with why I thought Daniel was reacting with these food chemicals back in January. Here is the link http://www.latitudes.org/forums/index.php?showtopic=2946 . Here are some follow up posts to that posting http://www.latitudes.org/forums/index.php?...Carolyn+N\ and http://www.latitudes.org/forums/index.php?...hl=Carolyn%5C.N .

 

 

We have been dealing with tics with my son since he was 3. I have posted on here many times about all the supplements he is on. The only thing I can say is he is almost 9 and pretty much tic free now as long as we keep up the supplements and he mostly avoids those things that bother him. He is heading into the peak time for tics for his age and with all of the supplements and diet change I truly believe his intestional track and liver are getting what they need now to help process out what he could not do by himself prior which was food chemicals (MSG, food dyes, high fructose corn syrup). It takes time for the body to heal once on the right supplements.

 

B6 has been a HUGE part of what helps Daniel. He gets anywhere from 50 mg's to 100 mg's a day. He get the 50 mg's from Bonnie Grimaldi's vitamins TS-Plus. Anyway when Daniel's tics get going I always give him an additional 50 mg's.

 

Speaking of the TS-Plus vitamin for Daniel it has helped him so much. He has been on it since he was 5. I did not realize how much it was helping him until I tried switching to a different product and within a month his tics came back full force. Another time I tried cutting his dose in half, just to save some money, and he seemed fine for a while. Then again I think his body became depleted of the vitamins and minerals, from not getting enough, and the tics have came back. So I realized I could not "cheat" and try to save money. He is on the recommended dose for his wieght now and doing great. It is an expensive product but well worth it. The biggest pain is it is so many vitamins for him to take but it is such a part of his life and he realizes now the benefit of the vitamins which makes it so much easier.

 

Another thing that has been sooo helpful too is Glycine. Glycine helps the neurotransmitters run more smoothly. He gets anywhere from 2500 mg's to 5000 mg's a day. When he is has really bad tics I give him 10,000 mg's for several days in a row. I use Carlson brand glycine.

 

Also when his tics get really going I increase his B6 to up to 150 mg's a day for about 3 days. Then I go back to the 50mg's a day.

 

Another product that he takes that has been really good for him is NAC (N-Acetyl-L-Cysteine). I buy the Vitamin Shoppe brand generic form. He currently is on 600 mg's a day along with 1,000 mg's of vitamin C a day. The vitamin C is helpful when taking NAC to help prevent kidney stones from building up from what I have read. Although my doctor told me this really is not too great of a concern. But the NAC helps the body remove chemical toxins and other toxins from the body. It supplements the liver. The vitamin C is important one way or another for many reasons. But one primary reason is to lower histamine levels.

 

Back to the NAC I know of at least 2 other people on the forum who had really good success with the NAC. It certainly would be something to run by your doctor.

 

Have you tried giving her Benadryl or some other anti-histamine to see if his tics reduce? I know I and many others have seen a reduction in tics with Benadryl. Some people, however, will have an increase in tics when taking it but not for most. My thought is if you see a reduction in tics you know that his histamine levels are elevated which more then likely they are elevated one way or another.

 

The other thing that really helps is taking Epsom Salts baths. Use 2 cups of epsom salts in a bath and soak at least 20 minutes. I noticed with my son that I don't see a sudden reduction in tics after the bath it is usually a couple hours later.

 

Carolyn N.

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My husband and I usually agree on everything, well, almost everything but we are not seeing eye to eye on this.

 

Our ds has always been a spirited child. We went through terrible 1, 2's, 3's & 4's with him. He was highly aggressive (hitting, crying, tantrums) yet highly sensitive (hated tags in his shirt, loud noises, crowds, new places) He seemed to outgrow a lot of these issues with time. And then came the tics around age 5 1/2. He had a throat-clearing tic that lasted from Dec 06-Feb 07. He was very sick at the time it started, with a cold/cough, and we thought it was just from being sick. He then replaced the throat-clearing with rapid, heavy eye blinking. The eye blinking was way worse than the throat-clearing ever was. He started out blinking all.day.long. This is the tic that always comes back. He's waxed and waned, and even been completely tic free for 6 months at a time but then they seem to come back. He developed a new eye roll tic in September, had swine flu in October and ever since, he's been ticcing bad. He started throat clearing, blinking, finger flicking/touching finger tips (looks like he's trying to flick something off his finger), neck tic (looks like he's trying to crack his neck/stretch), he wipes his hands on his pants or the couch constantly, and I see him stretch his mouth a little bit. It's like he had an explosion!

 

I'm worried and not sure what to think. My husband claims he doesn't see half of it! :mellow: We have no confirmed family history of TS. We do have a whole lot of autoimmune disorders though.

 

He had strep titers done back in 2007 when he had his first explosion of tics and was negative. Not sure if I should explore PANDAS as a possibility again?

 

I think we should find out why he has this burst in tics, but dh doesn't think we should. He thinks ds is fine and says, "So what if he has tics. They're not hurting him or hindering him in anyway."

 

I guess I just look at the body as a whole and feel like we should seek out the reason this is happening. Am I crazy for thinking this way?

 

Should I pursue anything? If so, what? Where do I begin?!

 

Will it hurt him to just let it go and chalk it up to tics/TS if it possibly could be PANDAS? I lean towards PITANDS since he seems to get hammered with tics after an illness. Or is that typical?

 

We just started him in therapy last week for his anxiety/fits he has. The Psychiatrist put him on a low dose of Zoloft. He noticed the tics (he has tics as well) and it bothered me a little because he kept talking to ds about his tics, and I'm sure that only made it worse. He sees the therapist again in a couple weeks, should I request he not speak to ds about the tics? It was kind of strange because he kept telling us, come 17-18 years old, they will be gone, yet he himself was clearly ticcing in front of us. I felt a little bad because I asked him about his tics and he looked rather shocked that I noticed.

 

Anyway, getting back to my original reason for posting...

 

Would you do anything in our situation? Does this sound like TS?

 

I think you should have a strep culture done. From what I've been reading over on the PANDAS forum, you can't discount PANDAS simply based on the titer score. Something like over 30% of kids will have low titers even when there is/was a strep infection. I am by no means an expert on this, still reading/learning myself. You maybe should copy and paste your post to the PANDAS forum. If you are leaning towards that possibility at all, the people there know a lot and can offer great guidance and resources.

You're not alone either in the husband dept. I find that I hardly even discuss it with my hubby anymore b/c he thinks that I read something and then want to pin that dx on our daughters. He's all about letting her "be a kid" and while i do agree with that, but i worry if i do just "let it go", there will be permanent changes to her brain and the tics won't resolve. So if there is something underlying, i want to fix it! I have vocal/motor tics to this day and I pray that neither of my dds will have to battle it lifelong as I have.

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We just started him in therapy last week for his anxiety/fits he has. The Psychiatrist put him on a low dose of Zoloft. He noticed the tics (he has tics as well) and it bothered me a little because he kept talking to ds about his tics, and I'm sure that only made it worse. He sees the therapist again in a couple weeks, should I request he not speak to ds about the tics? It was kind of strange because he kept telling us, come 17-18 years old, they will be gone, yet he himself was clearly ticcing in front of us. I felt a little bad because I asked him about his tics and he looked rather shocked that I noticed.

 

 

Hiya

 

I also feel my dd gets worse when her tics are discussed in front of her/with her. Might be worth suggesting that the psych deals with the anxiety, and leaves disscussing the tic issue (unless your son brings it up of course!)........

 

Good luck

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