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Guest Lyn
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Hi everyone,

 

I am new here.

 

My son has diagnosed TS in August. He is now on Risperidone 1 mg before bed.

I have been following this forum almost everyday since then. I have started giving him supplements for a few weeks.

 

My son had fever last week and has subsided. Now he is stilling cough and nose blocked. Cough very badly last night. Doctor asked to give him inhaler and even advise to stop supplements when he is on cough and nose medication.

 

Can anyone here give me some advice whether to stop supplements when child has fallen sick.

 

Thank you very much.

 

Lyn

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Welcome Lyn,

 

I can't answer your question on supplements directly, sorry. I hope others have experience here.

 

I used to get horrible coughs with colds, so did my son, so I am very sorry for you and your child--I know all too well how hard it is to try to sleep when you can't stop coughing at night. And how hard it is for a parent to listen to it.

 

Air filters are very helpful for bad coughs--even if he has no known allergies. Perhaps a medical supply center can rent one to you for a week? And wash all his bedding--any dust is a real irritant to coughs and inflamed sinuses.

 

How old is your son?

 

Claire

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Claire, thank you for your reply.

 

My son is 11 yrs old and weighs abt 75 lbs, rather skinny. He had 2 episodes of nose sinus infection this yr. and cough a few times before the onset of TS. He was not like this last few yrs. I believed he is under too much work from school, stress and too tired that causes all the problems..........

 

Actually, we had done a hair test and has given nutrition supplements. However, I

did not let him take them as he is still coughing....really don't know what to do????

Will be seeing his neurology doctor tomorrow...hopefully he can help.

 

I wonder other parents continue giving vitamin and mineral etc supplements to their children when they are on coughing or cold medication.

 

Lyn

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Lyn,

 

I am just afraid to counter what your doctor says and my son hasn't had a bad cold since we started supplements. In general (assuming no medications are involved) it is okay to give some supplements when a child has a cold (stomach flu and throwing up notwithstanding).

 

Here is a link with supplements for a cold/flu

http://healthinfo.healthgate.com/GetConten...&chunkiid=21573

 

However, the question is, is there something in the medicine he is taking, where the supplements are contraindicated? Can you ask your doctor WHY he says not to do so? If he has a specific reason, this may help you to make a better decision.

 

Is your child in middle school? They give way too much work in many middle schools. Be careful of the work overload, it can cause adrenal stress and even adrenal exhaustion. I think it hits kids with tic syndromes often depressed immune systems worse than others. I cannot overemphasize how important sleeping in a dark room is. Also, Pantothenic acid, biotin and Vitamin C help with the stress.

 

 

Are you saying the TS occured after 2 sinus infections? Sounds like a PANDAS possibility, as other respiratory infections besides strep can cause it. On the other hand, the steroids and antiobiotics for the sinus infection can cause yeast overgrowth which in itself can aggravate a predisposition to tics.

 

Please check back, I suspect others here have more experience with medication and supplements.

 

Claire

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Hi Claire,

 

Actually my son had shown tics(the very first one) when he was abt 5 years old. He blink his eyes very often even his kindergarten principal noticed it. However, this stopped in a few weeks. After that, on and off he had tics like twitching his body, make sound like the meowing of little kitten, and eye twitching etc. Each tic last about a one, two weeks and the duration between the stop of one tic and the start of a new tic can be quite long, like a few months time. I remembered I did not even see any tic at all when he was 9 years old throughout the whole year.

For the past few years when he showed tics behaviour, I did not bother or think that there is a problem. I thought it was just bad habits and also they went off in few weeks time. I didn't know anything about tourette syndrome at all. All these did not bother me at all. I didn't know that there are such cases as we can't actually control our own body's movement using our own brain.....until August he started nodding and shaking his head very often....often until it is a non-stop action. He just keep nodding his head non-stop. At that time, I still are not aware about TS until I took him to see doctor and dx him as TS. My heart breaks whenever I see him nodding and shaking his head, I cried....for months...and no one can help.....

 

Can it be PANDA that trigger tics...but he actually had shown tic behaviour since kindergarten....I think I will check with the neurology doctor tomorrow...Hope the doctor can answer my question

 

Lyn

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Lyn,

Please seek a 2nd opinion for you son, if you can, try to find a dr that has an interest in natural therapy or a naturopath. If the neurologist has done all the tests and is only offering traditional medical drugs, he will try to tell you that that is the only thing that will work. We have all been there.

 

A lot of the people on this forum have given accounts of what the drugs did to their children, try to read them so that you can make an informed decision. Knowledge and education are empowering. You will get plenty of support from this site if you need it.

 

Look into how many food additives are in his diet, this includes colours, preservatives and flavours. If you take these out straight away, I'm sure you will see a big improvement. If he has had tics as long as you say, you will notice what works and what doesn't.. Trust your instincts, Dr's don't know the answer to everything, and they feel threatened when parents offer them information that hasn't been technically researched.

 

There is no evidence to suggest that taking supplements like Vit C will cause the colds to become worse, if anything it helps to relieve them due to the antioxident value.

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Hi Lyn

 

Have you seen improvements from the Risperdal (risperidone)?

 

I ask because it is a fairly strong antipsychotic, and I have heard of many unpleasant side effects from it.

It's biochemical finctions are as a Tranquilizer, anti-psychotic, benzisoxazole derivative; Dopamine D2/ Serotonin 5HT2 antagonist.

 

I know this is not related to your question re the supplements and his cough, but I have a natural instinct for concern when young kids are on such strong anti-psychotic drugs.

 

As to the cough etc......certain kinds of "inhalers" can contain substances that interact with meds so do ask your doctor about interactions

 

Generally most supplements are very beneficial when one is ill, but you do need to check to be sure that none of the ones that your son is on are interactive with either the Risperdal or with the meds being given for his cough/cold

 

 

It really would be so helpful for you to try to get your child to an Integrative doctor who will run tests and use more natural treatments to help him

The thread at the top of this Forum on "Finding Medical help" can guide you, and we are always here for you.

 

:D

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Lyn,

 

Since it started when he was 5, it doesn't sound like PANDAS. The yeast from the antibiotics could still be an issue.

 

Also, I read that head shaking could be 'tardive dyskenesia' or something (I don't know how to spell it--Chemar do you??)--and related to taking the drugs...PLEASE research this. I am not sure if I have the right term, but it affects a huge number of people taking these drugs and can be permanent. Whereas the tics can often be

 

I have to say, I agree with Chemar and Ausclare 100% re the drugs and checking out an alternative doctor. I refrained from commenting before, but I also feel so strongly about this. You seem to communicate that you are not totally comfortable with what your doctor is suggesting and the constant head shaking worries me. The alternative MDs list at the top of this board are 'real doctors' to give you true professional guidance. This isn't like cancer or diabetes where weaning off a drug and trying an alternative method might risk death.

 

Just read this board--we have many many more successes than failures in reducing tics without drugs. Lots of 'in progress' too--to share notes and support during the process.

 

Claire

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Tardive Dyskinesia IS one of the serious side effects of neuroleptic and antipsychotic drugs. Thank God we took my son off the meds before it became irreversible in him!!

 

here is an excellent website on the harmful effects of these drugs

http://www.breggin.com/

 

Dr Breggin has also written a book (one of many by him) called "Your Drug May Be Your Problem" which was instrumental in helping me to make the decision to wean my son off the drugs.......and so LITERALLY saved his life!!!!

 

here is Breggin's booklist, and you can click thru to this book info from there

http://www.breggin.com/prbbooks.html

 

 

The medical establishment has dissed Dr Breggin for years calling him a quack and other unsavoury names, especially for his stand against the use of brain drugs in children and teenagers......well, now, after all these years and damaged young brains, the FDA has FINALLY put the black box warning on SSRI drugs.....something Dr Breggin begged for for so long!

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Hi Ausclare, Chemar and Claire, thank you so much for all the information, help and encouragement given. Really feel so good to talk to people like you who really care....

 

I have actually taken my son to see 4 different doctors just to confirm the TS diagnosed. Three neurologists and 1 pyschologist. No test (blood, urine or ???) was done at all places. All they did were just listen to my verbal description of my son's previous tics symptoms and on the spot diagnosed him as TS. Only the last doctor prescribed Risperidone as at that time my son's tics were quite severe-head nodding, shaking and eye rolling. I told myself medication is for short term. I want to stop his head tics first, it is kind of affecting him concentrating to do his work. I will do other natural way...and later slowly wean him off the terrible drug!!!

 

At the same time, I had started since August cut down (not totally) his intake of artifical colours, preservatives, flavours, milk , bread, etc. I also give him B complex supplement and DHA and later taurine...no obvious improvement.

 

Chemar, the frequency of my son's head nodding tics etc decreased after abt 1 week taking the Risperidone (he started the medication on 23 october). I should say there is improvement. However, he had more tics this few days..there are new things like shrug shoulder, stretch his leg while sitting, twist his body...because of his cough, cough med. , nose block or fever last week, or the stop of supplements????I really don't know and can't tell. By the way, Chemar, I am from Singapore. I can't really find some one, I mean a doctor who really believe in alternatives and supplements here.

 

Claire, my son's head nodding and shaking tics are before taking the drug risperidone...so I suppose not Tardive Dyskinesia...however I do know that long term taking risperidone could lead to TD, can I know what is meant by long term on average? few weeks, few months or few years?

 

This morning appt with my son's neurologist. He advised not to take cough med. continue with ventolin inhaler until the cough stop. My son did not tic in his office, so no increase in dosage of resperidone...still 1 mg before bedtime.

Claire, I asked the doctor abt PANDAS. he said could be. However, whether it is or not, at this point is not very important as the treatment to TS is the same. Therefore strep swab test is not necessary.

I showed him the hair analysis report I obtain from the natural therapy centre and ask for his opinion, he did not even want to have a look at it and tell me to throw them away......saying that this is not proven and has no use at all.....I also ask him whether there is any nutritionist he could recommend to help me check for my son's vitamin, mineral etc deficiency...He said no....no use.

However, he did say that what he is going to do with my son is continue with Risperidone for abt 3 to 6 months and then slowly wean him off the medicine.

 

I will definitely start the supplement, and really hope it works for my son.

 

Once again, thank you all of you for all the concern and help....

 

Lyn

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Hi

 

I support every word that lyn mentioned about our doctors here who dont believe in natural therapy. We also do not have many naturopath here.

 

After hearing some feedback that accupunture is good for tics relieve, I visited a so-called established TCM hoping for an accupunture session for my son. Guess what he told me? "No better dont do it because my son may move and the needle may just break and left inside his body and that could be dangerous" ???

My son ended up with a massage session. That was the last time we visited that clinic.

 

Lyn, if your son has sinus and is sensitive to dust, can try to install a air-cleaner/filter in his bedroom. I have a Sharp brand installed in my son's room, he has sinus too, can see that his condition has improved. Also if he sleeps with the aircon on, then should also put a air-filter in the aircon (can buy from BEST Denki stores).

 

I am currently searching for a place here that does vitamin deficiency test, will keep you updated if I found one.

 

Take care.

jc

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Lyn,

did your boy have all his immunisations?

 

If so, you could get your local GP- not the specialist as he seems to be one of those (threatened) Drs I told you about :D to order a blood test for heavy metals.

This would at least rule out one thing and in Australia you need a Drs signature to order this, I'm not sure about Singapore.

I will try and find what info I can on alternative medical practitioners over there.

Good luck.

 

Clare

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Lyn,

 

When you said you were from Singapore, it reminded me of a conversation I had with a guy here in Australia, who specializes in treating kids with ADHD and ASD. He says that he has not specifically dealt with Tourettes, but he believes his treatment would work for them as well. When I spoke to him recently, he said that he was busy at the time preparing to do some training in Singapore in early December.

 

His web site is www.adhd-specialist.com.au

 

You could contact him and get a referral for a naturopath/nutritionalist who is treating such conditions naturally as he is. As he is training people there in these techniques, those people must be at least open to alternative treatments, and things like hair analysis

 

He is an older guy, retired I imagine, but he has written a book detailing latest treatments for these types of conditions, and he seems quite knowledgeable.

 

Good luck

 

Caz

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Hi jc, thanks for your support. It is really wonderful to know you.

 

Hi Ausclare, My son has complete all his immunisations.

I managed to find a natural therapy centre here, a hair test was done for my son. The results showed that Hg and Al is high in the accetable range, Hg nearly hit borderline to the high range. Is this the same as testing heavy metal with blood test. The natural therapy centre's site is

 

http://www.naturaltherapies.com/index.php

 

and the hair test is sent to a lab in US, its site is

 

http://www.spectrumhealth.biz/shop/storefront/shop.asp

 

Ausclare, if there is any alternative medical practitioners here that you may find out, please let me know, thanks.

 

Hi Caz, thanks for your reply. I can't get into the site

www.adhd-specialist.com.au

Is there any other way to locate this nature doctor? Thanks.

 

Lyn

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