What is the normal pattern of tic changes?

[KateH]

I'm from the UK and am pretty certain my 9 year old daughter has TS but has not been diagnosed officially. More than 6 months ago now she had what I can only describe as a complete meltdown. She had huge anxiety, couldn't be separated from us, didn't go to school for 3 weeks, had rages, complete moments of irrationality and at the worst point was so exhausted she would fall asleep in the day. We had her at the doctors more than once, thought she was hypoglyceamic etc etc. at the same time she developed a blinking tic and I realised she had a throat clearing and sort of gulping tic for a while. We managed to get her back to school and things calmed down a little and I started to research.....

 

I discovered my husband who also has mild tics ( I didn't notice for 20 years!) also probably has TS and had more obvious symptoms when he was a child. My daughters tics have started to get worse and she has developed a very obvious, prolonged nose scrunch, flicking of her wrists and still blinks, gulps etc.

 

I am currently giving her natural calm magnesium ( 2 teaspoons per day), omega 3 1000mg, and 10 mg B6. I have cut out preservatives, additives, colourings as much as possible and she is currently dairy free and low salicyclates. I thought I was seeing an improvement as the frequency of her nose scrunching has reduced significantly but I i noticed in the last 2 days she has developed a flicking back of her head. It's not that often but I'm now worried this is just the start and it is going to get really frequent and the reason the nose tic is decreasing is because this new one is starting.

 

I'm finding this whole thing really tough and tonight just feel like crying. Do people have experience of how tics wax, wane and change? Is this a normal pattern? Do you think what I've done has made any difference? Has any one got other suggestions? Sorry for all the questions, I am so terrified everything is going to get worse.....

 

Kate

Edited December 4, 2014 by KateH

[Chemar]

Hi Kate

 

There really is no set "normal" for tics as they vary so from individual to individual and dependent on root cause, triggers etc

 

Even though you suspect a family history re your husband, still a few things you said made me wonder if perhaps you might be looking at something in addition to TS

 

You mentioned meltdown and rages etc at the start of all this....now yes, people with TS can have co morbid issues with the tics....but more and more it seems that kids with infections can exhibit what you described, strep being a major culprit but not the only factor.

 

So in addition to invenstigating possible TS, I do also suggest you look at our PANS/PANDAS forum, especially if your child was ill. sore throat or other malaise preceeding the onset of the tics

http://latitudes.org/forums/index.php?showforum=17

 

Here is also a good website that explains http://www.pandasnetwork.org

 

Do also look at our Helpful Threads section pinned to the top of the TS forum

[KateH]

Thanks,

 

I had considered PANDAS because she had had a cough beforehand that lasted a while, but now looking back am not sure if this wasn't a tic. I feel that it is more likely TS because of the family history, it turns out my husband's mother also has mild tics, I don't know what she was like as a child. When I look back there were also previous incidents when my daughter showed short lived but pretty irrational behaviour and moments of anxiety,again brief, a few years beforehand.

 

She is also a very active child and has always struggled with her attention, I wouldn't say she has ADHD but she is right on the edge of it. All these point more to TS I feel, although this is all my own assumptions as the doctors here have been fairly unhelpful.

 

I have introduced zinc as a supplement today as well as the other things I'm giving her and will see how we go, she is ticcing fairly mildly at the moment and fairly relaxed. I was wondering how much natural calm ( mag only) people give, I really notice a difference when I don't give her this both in mood and ticcing. I am currently giving two rounded teaspoons a day (one in morning and one in evening) I'm not sure if this is equal to 2g or if that would be a flat teaspoon, there are no proper instructions! Do you think it is safe to give more than this to see if it makes any difference?

 

Thanks

 

Kate

Edited December 3, 2014 by KateH

[Tiger]

Hi Kate

 

we are in the UK too.

My son 6, developed irrational behaviour, anxiety, regression, meltdowns/aggressive verbal outbursts & shortly after tics.

I'm not entirely sure whats why this all happened but I do keep coming back to PANDAS.....he had scarlet fever when he was 4 it was 3 months later when i noticed obvious changes.

I give him magnesium citrate in the form of floradix & magnesium chloride bath salts.

I get it from holland & barret when they do the half price offers. This is amongst other things I've given him to help manage the tics.

Mostly the tic is just just a subtle body jerk that I only would notice & more so if i'm holding him or he's sitting on me. We hardly see the emotional issues any more unless there been recent illness. I think the mag helps - I think we only see what I call 'flare ups' in the tics (they are very frequent & very forceful) when he's been ill.

When this happens nothing seems to help

 

I've heard of natural clams but have never found it in the uk - where do you get yours?

[Tiger]

LOL i meant calms ---- anyone heard of clams helping with tics, you never know

[Cj60]

Hi,

 

Natural Calm was our go to supplement when we first started addressing tic issues. We also built up to 1 tsp in the am and antoher in the pm. We found that any more than that resulted in loose stools, which is usually the factor that tells you your child has hit her/his limit.

 

Eventually we added on a powerful, comprehensive multi vitamin, which contained a significant amount of mg, so at that time we tapered off of the Natural Calm.

 

Good luck!

 

Chris

[KateH]

Hi Tiger,

 

I get the natural calm off Amazon, it's shipped from the US though I think. It is pretty pricey but so is the floridex and I think it works better for my daughter. Interesting that you mention scarlett fever because my son had it about 1.5 years ago and I wondered if my daughter had had it but not shown the rash. Seems like a long delay though before she's shown tics etc?

 

Has your son been diagnosed with PANDAS? I think the doctors here are fairly useless with all this stuff.........

 

Thanks Chris for your advice.

 

Kate

Edited December 4, 2014 by KateH

[Tiger]

Hi Kate

No PANDAS diagnosis, just lots of dismissive comments from GP & his paediatrician - they've never heard of it. Yep totally useless.

No diagnosis at all, quote:

'well your son was ill & sometimes children take along time to recover, this could explain the emotional outbursts you're observing & tics.....well they happen sometimes in childhood, just ignore them they should go away'

Can you believe we waited 6months to hear this.......18 months later with not much change the paediatrician refuses my request for a referral to a neurologist & I'm having to find ways to manage the tics & anxiety with no support at all from the NHS.

I truly hope you have more success.

Regarding your daughter & her brothers scarlet fever, I've read somewhere that children susceptible to PANDAS can react when people they are close to have strep infections. I've also read that some children has tested positive for PANDAS but have never displayed strep like symptoms, its seems to be a very complex disorder.

You might want to have a read of some of the post in the PANDAS section - I find it really useful.

 

`Tiger x

[KateH]

Hi Tiger,

 

Sounds very similar to our experience of the NHS. They only did a blood test because I pushed for it and then told me to buy a blood sugar monitor and to get her school to refer us to the Junction for councilling.

 

We decided against this and I have been trying to look at alternative solutions myself since September. I do think we are making progress but I'm not sure if this is just a natural waning......

 

Might try the clams next !! 😜

Edited December 4, 2014 by KateH