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HI all,

After having son on supplements for 3 weeks - he had shown a great improvement in his neck and facial tics.

 

But over the last 2 days his neck jerk has got a lot worse and his neck is really sore. His facial gramace has also started again. He has been eating all organic and no rubbish in his foods for 3 weeks now. He is taking 500g magnesium, vit B, probiotic, and taurine 500g per day. Can I increase any of these - or is he on the maximum amount? Thanks.

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bev, it depends on his age and body weight, but he already is pretty much on adult dose of mag and taurine already

 

have you tried soaking a washcloth in warm epsom salts and letting it rest on his neck? is he doing epsom salts tubs? that is w good way to increase magnesium without having to ingest more

 

he could be in one of those mysterious waxing modes, or may have been exposed to some trigger. Is he excited or stressed about anything? (apart from the tic increase of course) Exposure to any chemicals/pesticides/perfumed stuff?

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bev, it depends on his age and body weight, but he already is pretty much on adult dose of mag and taurine already

 

have you tried soaking a washcloth in warm epsom salts and letting it rest on his neck? is he doing epsom salts tubs? that is w good way to increase magnesium without having to ingest more

 

he could be in one of those mysterious waxing modes, or may have been exposed to some trigger. Is he excited or stressed about anything? (apart from the tic increase of course) Exposure to any chemicals/pesticides/perfumed stuff?

 

 

Hi Cheri,

Thankyou for you reply. I had sort of thought he was on a high dose. He is approx 39kg and he is a slim build - he is 11.

 

We have only tried the epsom bath once but unfortunately he had a hypo whilst in the bath and then afterwards he couldnt sleep! But, i dont know if he had the hypo because of the bath or if he was going to have one anyway! Also, he was starting back at school the next day so this may have contributed to the lack of sleep problem!

 

I did try the mag rub on his neck and he liked it - not sure if it stopped anything - but i will give it another go.

 

Not sure if he has any new triggers because we are on half term from school - i suppose it could be that he is spending more time at home and there may be a trigger in the house?

 

He did tell me 2 days ago that he feels 'odd' and he found it hard to describe. He said that he felt like crying and felt very emotional about something but not sure what it was.

I am wondering whether he is a bit depressed. He has needed lots of hugs and cuddles and although he always says he loves me - he has been saying it over and over for the past week. He even held my hand today at the shops - in public! He normally would not do this - he is 11 and worries about what people will say!

 

His friends had a get-together this week and he wasnt invited - i think its because of the diabetes - people seem very scared of it. I played it down a lot and told him we could have a sleep-over in the next couple of weeks so he didnt feel bad - so not sure if this has upset him more than i have realised.

 

The only other thing i can think of is we had soot falling from out chimney and had to have the chimney sweep out to clean it all out this morning - can soot be a trigger do you think?

 

Thanks. Bev x

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HI all,

After having son on supplements for 3 weeks - he had shown a great improvement in his neck and facial tics.

 

But over the last 2 days his neck jerk has got a lot worse and his neck is really sore. His facial gramace has also started again. He has been eating all organic and no rubbish in his foods for 3 weeks now. He is taking 500g magnesium, vit B, probiotic, and taurine 500g per day. Can I increase any of these - or is he on the maximum amount? Thanks.

 

 

i hope this is where the urine test comes in......when my boy started brain balance they did a panel and he show high in taurine, low and in need for tyrosine

i thought after we added he vitamis we added the aminos and i thought he always seemed more wound , movements since then..i asked the monorator and he said no way just keep going...we stopped taking everything by end of Oct. .well i looked at it a couple of months ago it had taurine and i am still trying to cofirm the tyrosine.....

so as per threads here i felt like taurine would be good and added it seperate....i stopped again....nothing monumental but i don't think my boy needs more taurine...i would like to get the test redone to see where we are but $$$$$

I am contibplating adding tyrosine....again if anyone could chime in as to why its bad....if correct it picks up more dopamine????

but according to his panel he has very low vanilmandelate and homovanillate which indicate a need for tyrosine.

also his tsh was a little high which could be low tyrosine

and half his tics are in his legs..again not sure if indication of low tyrosine or that tyrosine has helped or indicated in restless leg sydrome

 

i

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Hi fixit

 

sorry I am not too sure what you are asking?

 

not everyone needs taurine and it is generally only used by people who have confirmed Tourette Syndrome as for some of them, it seems to help reduce tics. Some people (even those with TS) seem to not tolerate it and so perhaps they already have enough of it in their system or are just sensitive to it

 

people with TS generally should avoid extra tyrosine because it is dopaminergic

Bonnie comments on this here (see points 7 & 8)

http://www.bonniegr.com/Interview%20with%20Bonnie.htm

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Hi fixit

 

sorry I am not too sure what you are asking?

 

not everyone needs taurine and it is generally only used by people who have confirmed Tourette Syndrome as for some of them, it seems to help reduce tics. Some people (even those with TS) seem to not tolerate it and so perhaps they already have enough of it in their system or are just sensitive to it

 

people with TS generally should avoid extra tyrosine because it is dopaminergic

Bonnie comments on this here (see points 7 & 8)

http://www.bonniegr.com/Interview%20with%20Bonnie.htm

 

thanks for posting that

 

well if one takes extra tyrosine i guess some are saying it would be bad for tics...i guess i want to know why?

and if you stop taking it do things go back to the way they were? so don't even test it?

has anyone tried to take tyrsoine...or is it just too scary?

 

and this paragraph from bonnies site:

High phenylalanine in the diet can block other "Large Neutral Amino Acids", such as valine, leucine, isoleucine, tryptophan, tyrosine, histidine, and methionine from entering the brain. Notice that tryptophan is on this list, which is the precursor for serotonin, a neurotransmitter necessary for the feeling of calm. Phenylalanine is also a precursor for dopamine and may cause problems in TS where certain dopamine receptors may be supersensitive.

 

so pheny's bad...but it blocks tyrosine which i thought that was supposed to be good but it also block tryptohpn which would be bad...i don't get it

high phenylaline foods include wild game including buffalo which is supposed to be one of best meats going, fish etc

 

and i just looked up all of these:valine, leucine, isoleucine, tryptophan, tyrosine, histidine, and methionine from entering the brain and they look like they would be good for you

 

this on tyrosine from u of Maryland Medical center

http://www.umm.edu/altmed/articles/tyrosine-000329.htm

 

restless legs

http://www.helpguide.org/life/restless_leg_syndrome_rls.htm

and i'm not sure how reliable this is

http://naturalmedicine.suite101.com/articl...s_legs_syndrome

my son says it feels like socks are falling inside his legs and he tries to get them up...ie first link with creeping, crawling...but its during the day

 

oh and he muscle tested low on dopamine twice

 

maybe the problem is dopamine isnt' being taken up enough???

 

anyone's thoughts welcome

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fixit, you do need to remember that this is referring to people with Tourette Syndrome! (ie on Bonnie's site)

 

people with TS have to avoid things that are dopaminergic

One cannot look at general info and then extrapolate to TS.

 

if your child is showing low dopamine and high taurine and needs tyrosine....perhaps he doesnt have TS? in which case none of this would be relevant to his specific condition

 

not saying this is so ...just mentioning the contradictions

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I think I may have found out why tics have increased. My son had slightly sore dry throat for the past 2 days, and this morning he has woken and his blood sugars are 15 which is very high and always indicates an infection or illness so needs more insulin. I think being ill has triggered more tics. Will the tics subside to previous levels when he is feeling better? Thanks for any advice. x

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so sorry to hear he is ill bev.

 

whatever the root cause of tics, it certainly does seem that, with some exceptions, kids seem to tic more when they are ailing. It is most likely the immune system reacting to the illness and so somehow triggering the tics.

This would be an excellent time to try to get a strep test as well just in case!

 

hope he feels better soon.

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so sorry to hear he is ill bev.

 

whatever the root cause of tics, it certainly does seem that, with some exceptions, kids seem to tic more when they are ailing. It is most likely the immune system reacting to the illness and so somehow triggering the tics.

This would be an excellent time to try to get a strep test as well just in case!

 

hope he feels better soon.

 

Thankyou Cheri,

 

I did think about a strep test - however as we are in the UK it is easier said than done! There is only one PANDAS doctor and you have to book an appointment months in advance!

 

Today I went to see a homeopathist and she has given me a tincture for my son to take with water. It contains chamomile,Balm, and Scullcap. I will give this a try and see what happens. She also gave me a rub for his neck containing a few essential oils that should help to relieve the stiffness he is feeling. She did seem to know her stuff and wants me to go back and report if there are any changes etc.

 

I will let you know if i see any results.

 

Thankyou again Cheri - your very kind. Bev x

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Hi Bev

 

by strep test I dont mean the advanced PANDAS testing...I mean just to ask for a throat swab strep culture so that you can see if there is active strep associated with the sore throat. The kind of strep test routinely done by doctors

 

Hi Cheri,

I see what you mean - I thought you meant for PANDAS etc. The problem here is that if you ask for a strep test for a sore throat - the Doctor would laugh you out of the surgery! They dont normally give anything for things like sore throats so they take the view that if there is no treatment required - then there is no test required either.

 

Yesterday I had to ring the GP for some antibiotics because my son had a slight infection from his canula (insulin pump) and I was worried that this may turn nasty and send his sugars high. The nurse said she wouldnt give me any without seeing it first and gave me some topical antibiotic cream instead. She did offer an appointment, but as my son spends so much time at clinics and hospitals i knew he wouldnt be keen to go and would rather be out for the day. Over here they dont like giving antibiotics routinely as they take the view that if you can fight it yourself then this helps to strengthen the immune system.

 

Did you have any thoughts on the homeopathy? Thanks. Bev x

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I am actually in agreement re not giving prescription antibiotics too often! We hardly ever use them and instead use natural antibiotics like monolaurin, olive leaf extract, garlic, honey etc

I hope you see good results with the homeopathic remedies. They are often very effective...they just take a bit longer than the strong drugs

 

I am rather amazed that the GP there doesnt screen for strep when a child has a sore throat. Even here, where PANDAS is generally still considered "quack stuff" they do still take strep seriously and usually will do a throat swab, especially if the parent asks for it. I hope they may do one for you as that would be a clue for you re whether strep is present and if it triggers tics etc for him

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Hi Bev,

 

Ring up your surgery and ask for a nurse appointment. They will do a swab test if you ask and you don't need to go into details about PANDAS etc. but make sure that you ask for a deep throat swab. Also ask your nurse for a 48 culture and not a 24 hour one like they usually do here.

 

If they try and put you off, you can always play the diabetic card, and maybe a little naughty by saying that he is really complaining of a sore throat and I don't want to end up with him not eating etc.....

 

If it does come back as strep be prepared with the abx used on the PANDAS forum and ask for one of those or they will just give you penicillin. I know what a fight it is, but our surgery regularly check lots of children with swabs now.

 

hope this helps

 

Jules

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Hi Bev,

 

Ring up your surgery and ask for a nurse appointment. They will do a swab test if you ask and you don't need to go into details about PANDAS etc. but make sure that you ask for a deep throat swab. Also ask your nurse for a 48 culture and not a 24 hour one like they usually do here.

 

If they try and put you off, you can always play the diabetic card, and maybe a little naughty by saying that he is really complaining of a sore throat and I don't want to end up with him not eating etc.....

 

If it does come back as strep be prepared with the abx used on the PANDAS forum and ask for one of those or they will just give you penicillin. I know what a fight it is, but our surgery regularly check lots of children with swabs now.

 

hope this helps

 

Jules

HI JUles,

Nice to hear from you again! I didnt know the doc would test for strep if i asked. What do i say my reasons are for testing because as far as i know they wouldnt give abx for a sore throat? If it is strep - what does this prove? What are the abx they use for PANDAS - i get so confused reading all the PANDAS things to be honest and i dont always recognise what is an antibiotic and what is a test! What is the difference between the 24 and 48 hour culture? Sorry for all the questions - as you know i am fairly new to all this - so need as much inforamtion as i can get. Also, if i ask for a different abx - what do i say is the reason?

 

Many thanks. Bev x

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