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Kathrynmc1974

UK help/advice

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We have been giving our 13 year daughter magnesium citrate tablets and b6 since before Christmas and haven't noticed a change in her tics. Over the past six months we have tried tic tamer and he repreeve patches with no success or change.

 

I was wondering if anyone especially those in the U.K. would be able to help with advice on what would be my next steps. I have bought the natural treatments for tics book so will start reading that.

 

We had an appointment at the hospital in September and they didn't real,y do anything just said they would think the tics would stop over the next few months and then discharged us.

 

Thanks for any advice

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Hi Kathrynmc1974 and welcome to the forums! I was waiting to see if anyone in the UK jumped in on this. We have a few active people there.

 

Meanwhile, you said you have my book, so I wanted to offer to do my best to answer any questions that might come up as you begin reading it. I hope you can find some answers for your daughter.

 

It's always so interesting when medical professionals predict how long tics are going to last, as you mention. No advice but just to wait it out. Maybe they get lucky often enough to keep believing that is good advice!

 

Looking forward to hearing back! Sheila

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Hi from the UK! I don't really know what to suggest though as my issue was always OCD rather than tics (or, at least, some kind of hybrid between the two), and we've been pursuing the PANS angle for ages now so that I've forgotten what the steps were that we went through before that. I did start a thread about PANS treatment options outside the USA, if that's of any interest to you (I dare say some of them overlap): http://latitudes.org/forums/index.php?showtopic=24626

 

I've forgotten what the dose of magnesium would be for a 13 year old with Tourette's, can anyone else answer?

Edited by Wombat140

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Hi I'm not from the UK but I can offer some help here. The first thing you should do is get your daughter tested for food allergies. The food allergy test is a blood test. Once you have the results, eliminate all the allergens from her diet. Continue the magnesium treatment - I had success with Natural Calm which you can find on Amazon. Magnesium will make her stools loose, so for how much you should give her, I would say start with 1/2 the recommended dose on the bottle and if she doesn't have diarrhea then increase slowly. I guess it's different for every kid - I give my 4yo 1 tsp of Natural Calm a day until he shows signs of diarrhea then I back it down to 1/2 tsp daily.

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Hi

We were always advised to use 400mg magnesium as supplement, and then also extra in diet, transdermal etc

I know this would be a bit lower for younger children, or lower weight

 

Just an FYI jcmom that the loose stools is from the magnesium citrate form in Natural Calm

Not all forms of magnesium have laxative effects

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Hi from the UK! I'm apologizing in in advance as I cant really suggest much.

Like you we havent had much help from GPs/paediatrician and NHS in general. It seems the mantra is 'do nothing....dont change anything ....dont talk about tics or mention them ......its common....they will grow out of it....'

It all happened for my boy when he was 5yrs old a while after he had scarlet fever.

At the time I googled my sons strange symptoms and eventually found that PANDAS ticked all the boxes. GP didnt want to kno, wouldnt do blood tests a referral to paediatrician took 3 months and again he, quote 'wasnt concerned'. I did manage to persuade him to do a ASOT blood test but I ws told they came back normal - however, this is possible with PANDAS. Anyway long story short we were finally discharged from hospital after 4 appointments which spanned 2 years no further into any investigations and all the doctor did was just repeat himself....I actually felt like I was repeating my self too! LOL I'm so sorry I cant point you in any directions. I was so frustrated by the lack of help so I googled and googled. (So much research you wouldn't believe!! - well actually probably everyone on this site has done the same) I carefully studied other peoples experiences and tried a few things to identify the triggers to his tics: Gluten and dairy elimination - result showed excluding them reduced tic frequency. He has been eating gluten and dairy free for 2 years now. He always tics infront of the TV, screen elimination and reintroduction concluded screens as a trigger. We stopped watching TV and using screens although he has no choice at school.

He gets worse after illness so I try my best to keep him healthy: (I wish i could take him out of school so that didnt catch every bug! floradix multivitamin (he has food/eating issues/OCDS). Magnesium flakes in the bath every night, Floradix magnesium before bed. probiotic daily, soluble Zinc when he is ill. Coconut oil in everything.

There not much I can do for the anxiety other than be patient and give lots of reassurance - I find his anxiety is the hardest one to deal with - he spirals into depression and avoidance

The violence, aggression and emotional outbursts; again patience and consistency; along with riding the wave.

I use tea tree & lavender oil on all cuts to help prevent infection.

Massage seems to have a positive effect on him.

 

Every now and then I hit a low and I desperately try the NHS again but I think my GP thinks I'm barking mad. Anyway, last October I requested a Cunningham panel blood test. Its not easily available but at first he thought he could access it and then decided he couldn't or 'wouldnt'....I even offered to pay for it myself but he suggested a referral to a neurologist instead...I politely asked him if a neurologist would be able to tell me anything new in terms of the NHS attitude towards tics in childhood. He seemed to think that a neurologist would know about PANDAS but i'm not holding out. Anyway guess what still no appoinment given to date. Happy to answer any questions.

You're not alone x

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Thanks for the replies. My husband went to the doctors last week for himself and he mentioned our daughter and he said he would have a look at her notes for when my husband is back there next week. So hopefully something will come from this. When we initially went to the doctors in September 2015 we saw a temporary doctor who referred us to the hospital..

 

She doesn't really have any other issues. I have ordered some multi vitamins to give her alongside the magnesium and I may give going gluten free a try

 

Hopefully we will have some information from our doctor next week

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