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Two questions about TS


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I haven't posted in quite some time and we're managing so so here. My almost 10 year old son has TS and we homeschooled last year. Due to some other family issues (his grandparents illnesses), we've decided that the structure of school was the best option for this year. He's managing somewhat, however we noticed something that started last year. He spells phonetically. He can pass spelling tests with flying colors yet when it's time for free writing or assignments he reverts back to the phonetic spelling. It started early in our studies last year and we corrected it when it happened, but now he's doing it non stop.

 

Is this typical of TS or is this something completely different?

 

Also, he's been taking 1 mg of melatonin everynight since we took him off Clonodine. It's been working great and he's been sleeping so much better. I'd say it's been about 6 months. Lately (since starting school) he's been very tired in the morning. Not wanting to get up. I understand that he's getting used to a completely different schedule, but it's become troublesome. He doesn't want to go to school, but only because he has to get up at 6 am. He goes to bed at 8 most nights and we're pretty strict on the schedule.

 

We have noticed an increase in behavioral ticsat home such as shouting out, petting the dogs pretty roughly, disobedience, rage (well, that's ongoing), obstinance, etc. Do you suppose this is due to the school stuff? Don't get me started on school because we're already having trouble with communications with the "nice" teacher.

 

So, any suggestions etc would be very helpful.

 

Oh, by the way, he's been primarily off refined sugars for over 6 months as well, with an occasional whoops in there. We use organic evaporated cane juice in place of sugar, and occasionally use honey or pure maple syrup. It was going well for the most part, but it some of the behaviors pop up even with the changes. It's pretty obvious when he's been sneaking refined sugar or if we have no choice (at an outing or event).

 

Thanks!!!

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Brink,

Wow. He sounds majorly stressed out and distracted, with sick grandparents and a new school. You no doubt have your plate full too. If you know that the spelling issues can be corrected with prompting, then I imagine his problem is attention to what he is doing in the moment. Have you tried talking to him about what's going on with him and how he's feeling about stuff? He might be bottling up a lot, as boys usually do, and be just totally distracted in his thoughts while at school. Poor guy. Is he worried that someone is going to die?

Pragmatically, I say have him re-read what he has written after he's finished or make him type assignments with spell checker when appropriate. But to be honest, he just sounds like a kid on overload who is trying to survive right now.

It may get better in a few weeks when he gets his groove on at school. As long as the teacher isn't calling home about it I would say wait and see. In a couple more weeks he may be more settled in and more ready to focus, granted the issues with his grandparents health aren't overwhelming him.

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hi Brink

 

I havent noticed the probs with spelling but so agree it sounds like he is having stress induced tics/behavior issues.

 

the routine of school/homework is real hard for some kids and especially for one used to a homeschool schedule. my son has always struggled really hard with early mornings

 

have you considered maybe reducing the melatonin dose some? if I take more than 300 MICROgrams it leaves me mega groggy in the mornings.

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Re the spelling...

 

there is something called stealth dyslexia (a term coined by Drs. Brock and Fernette Eide) http://mislabeledchild.com/html/Library/Dy...h_dyslexia2.htm : (below is a quote from their website, I added the bold)

 

Another tip-off to the presence of stealth dyslexia is the presence of spelling difficulties in a child's written output that are far out of character with either their general language, working memory, or attention skills. While these children are sometimes able to score within age norms on multiple-choice tests of spelling recognition, or even on weekly tests of spelling words that study carefully for, they essentially always show significant and surprising deficits when they try to spell words from memory.

 

These children are intellectually gifted (high IQ) but dyslexic. Because of their giftedness, they are able to compensate for their reading problems (they can read well silently and often enjoy reading) and their dyslexia may go undiagnosed....their giftedness masks their dyslexia and their dyslexia masks their giftedness. For whatever reason, it is much more difficult for these children to compensate for their spelling problems.

 

Anyway, something to consider?

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Thank you for your replies. The stealth dyslexia sounds like it could be a fit. I'm going to do some more reading about it and ask his doctor about it.

 

As for the fear of someone dying, yes, it's possible, however we've been dealing with a lot of tihs for 3 years. He's a sensitive kid, but he hasn't seemed out of the ordinary with any of this. I do agree that the school stressors are probably aggravating things.

 

I just got an email from his other main teacher and she said he's very respectful, actively participates in class and is for the most part a very happy and fun to be with kid. This helps ease my mind at least as fas as he's behaving in school.

 

The melatonin thing, yes it's possible that we could reduce the dosage and will try that. He's been on this dose all through the summer and was getting up at 6 on his own most days. Occasionally, he'd get up at 7 or later but he's always been an early bird. It does make sense though because once he's up and going, he's fine.

 

Thank you so much everyone!

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  • 4 weeks later...

We took him off clonodine because it made him too zombie-like. We found out that some kids with sleeping problems like our son were trying melatonin and having success. We would rather he was taking something his body already made than a manufactured chemical cocktail. Basically, we're were trying a more natural and holistic approach and it's doing the job. Plus, we stopped going to the neurologist because he was a jerk (the doctor) and he was the one who prescribed it. We went to another well known neurologist in our area and she said she didn't believe in prescribing medication for the low level TS that our son has. Who the heck knows anymore...so many conflicting views.

 

All I know is that the melatonin is working in helping our son sleep at night. Doesn't work for everyone.

 

Oh, and I spoke to the psychologist about the stealth dyslexia and she agrees that he should be tested. He's actually going in today for that.

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Hey Brink,

when you mention sleeping problems, what specifically is going on? My ds sleeps through the night but I don't think he gets enough sleep, probably around 9 hours and I think kids need more than that. I've considered the melatonin but I don't know if it allows them to sleep longer or just a more natural deep sleep(which I don't think is our issue here).

 

Thanks,

Bonnie

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We used melatonin a bit back. Not for sleeping but for some reason it improved her mood. Chemar gave me a possible explanation as to why it was having that effect on her but I can not find the post. Anyhow the reason we stopped was because even at a low dose it did seem to make her HYPER and VERY active all the time. I felt overall that even with the mood improved....it also had negative effects on her tics. I then found this while researching one night:

 

Melatonin can counteract the effectiveness of steroid drugs, can worsen allergic responses and can worsen auto-immune disease. Melatonin readily crosses the placenta, but the effects of above-normal quantities on a developing fetus or a pregnant woman have not been thoroughly studied. Melatonin is freely available in the United States and has been safely used by large numbers of people, so there are few financial incentives for large controlled clinical trials. Adolescents should not take melatonin supplements because melatonin can interfere with the growth and development that occurs after puberty. Consultation with a physician may be advised before taking melatonin supplements.

 

 

Thought it would help

http://www.benbest.com/nutrceut/melatonin.html//

 

Not trying to say you should stop the melatonin if its working for you....just wanted to inform you of my findings and also the results we had with it.I am sure if we all searched long enough we could find something WRONG/Negative with everything we try.....

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Brink

 

I was just wondering what dose of Clonodine your child was on? You said it made him like a zombie,

was the dose too high, could you have lowered the dose? That's what we did with our sons and it worked

quite well afterwards.

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Brink

 

I was just wondering what dose of Clonodine your child was on? You said it made him like a zombie,

was the dose too high, could you have lowered the dose? That's what we did with our sons and it worked

quite well afterwards.

 

Good point. For the record I am a 160-170lbs male and I take 0.05mg, which is 1/2 of the smallest pill available.

 

For a little kid I suspect half of that, or less (if you want to break the pill into 1/8s... ) may work.

 

I did have drowsiness as a side effect but it has subsided for the most part. I still get dizzy when I stand up too fast.

 

edit - not trying to tell you what to do, just saying.

 

Also sorry you had a bad experience with your neuro. Mine is about the coolest doctor I've ever been to. If you're in the Chicago burbs I can give you a recommendation.

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Hi Guy123

 

My sons were on a dose of Clonodine - .025 mg. Did you know there is a pill available that size? I live in Ontario Canada,

don't know if it's available in the US or not. The brand name is Dixarit, but apparently there is also a generic available.

My sons took .025 mg. three times daily (morning, mid-aft., before bed). No sedation issues with this dose at all after a couple weeks, and only mild

sedation while they were adjusting to it. My ts doc says it's the smallest therapeutic dose they can be on.

They are both in the 170 pound range

 

Lynsey

 

 

 

 

 

 

Brink

 

I was just wondering what dose of Clonodine your child was on? You said it made him like a zombie,

was the dose too high, could you have lowered the dose? That's what we did with our sons and it worked

quite well afterwards.

 

Good point. For the record I am a 160-170lbs male and I take 0.05mg, which is 1/2 of the smallest pill available.

 

For a little kid I suspect half of that, or less (if you want to break the pill into 1/8s... ) may work.

 

I did have drowsiness as a side effect but it has subsided for the most part. I still get dizzy when I stand up too fast.

 

edit - not trying to tell you what to do, just saying.

 

Also sorry you had a bad experience with your neuro. Mine is about the coolest doctor I've ever been to. If you're in the Chicago burbs I can give you a recommendation.

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I should add to my other post, regarding the dose of Clonodine, they (my sons) have

been on this dose since they were 7 years old, when they were less than

half their current weight, and still they did not have any sedative side-effects

then after initial adjustment (getting used to it for about a week-and-a-half)

 

They are now 15 and 17

 

Lynsey

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