maximum dose for supplements

[jewels]

Hi bev,

 

The strep swab will take about a week to get the results back. But remember to keep ringing the surgery for the results if you have a surgery like ours that sits on them for a while.

 

If you notice an increase in tics with a strep infection then it may be a good idea to rule out PANDAS as a possible cause. But as Cheri said tics can increase when a child is not well either so it is important not to focus on just one reason. You have to look for all the triggers. A pure organic diet is the best way to go forward for every child, this is a positive step. Its hard work but our house is more toxic free now, and this benefits everyone.

 

You don't need to give a reason for the strep test to the Dr. apart from that your son is suffering with a very persistant sore throat and you feel this may be a throat infection starting, and due to his health you need to catch things early. Try and speak to an understanding diabetic nurse if possible in the clinic. Ask for them to do a longer swab just in case it may just be the start of an infection. The red tape is very hard to get around but I have realised you can get past it slowly.

 

I would not even mention PANDAS to your Health centre at all. You are looking for triggers at this time and they will not even know what you are talking about.

 

If it does come back as a strep infection then ask for the abx that the pandas children use (I will pm you a list just in case) If you see after a few days an improvement then maybe you should look at this condition as a possible trigger. But please remember that tics wax and wane so you will have to revisit the abx route again on the next infection to see a clear pattern.

 

My personal experience with dd showed a marked improvement in symptoms when give a steroid burst, and also when I give her Neurofen. Maybe you could try neurofen if he is allowed to take it, and monitor the changes if you see any,

 

If it is strep then to get the expensive abx can be tricky. We only got them by saying that dds past experience proved other abx did not touch the infection. You are allowed if refused a certain abx to ask for a private prescription also. We have, but then the doc surrendered and gave up and we got what we wanted. I have a very cheeky charming hubby!

 

Let me know if you need any help with the pandas/uk bit, but still keep an open mind and carry on looking for those other triggers. I know that you are a really positive mum, and that is the number one most important quality you can have that will help your child.

 

Keep asking for all you advice that you need. I have found coming here you get lots of support and lots of ears that listen.

 

take care

Jules

[jewels]

I just remembered something that is really important.

 

Every pandas child has positive or negative result on the Abx that show a clear improvement of symptoms. If you have to revisit the abx route with another infection and you did not notice a difference on one type of abx then it would be worthwhile asking for another abx that is on the "positive result" list.

 

But please keep an open mind, most of the children with pandas have a clear regression with behaviour. Our dd who is 7 now will regress to the age of about 3. She talks in a baby way and becomes very very clingy. From reading all the posts, (pandas/ts) I would say that most parents have a very clear change in their children of onset of infection/virus. With pandas however it is like having two different children living in one body.

 

Hope this helps.

[Fixit]

If you notice an increase in tics with a strep infection then it may be a good idea to rule out PANDAS as a possible cause.

 

Not trying to argue but i totally disagree.. My son would be tic free..... I would see a tic start,, get swabbed, pos on strep, get antibiotics and tics are GONE!!

For us Tics would completeley remit after by 4th week post biotics..... I'd get oppostional behavior and walking on eggshells but that could be because they are sick...

IE the sneezing girl( it is just one repetative tic) doesn't have strep, i believe she has Mycoplasma pneumoinae..

For us with this last onset ,,,,we saw a doc the day before his tics started...he said he didn't feel good, and everything from the neck up was red, swollen, fluids, shiners, slight conjestion doc said, neg on quick test...Woke up the next day a ticker.....i just think it is so odd we saw a doc the day before?????

Still persuing other illnesses.

 

From my experience,I'm saying strep makes you just tic. Pandas/pitands is not just strep.

Maybe check out some of Dr T's thoughts/threads He has come up with a couple new accronyms, cute.

 

Unless you are saying rule out as in, persue it till you can com;etely eliminated it as an option...that i would agree too....but now there are whole list of illnesses and i bet more to come,,,check herpes, lymes, epsteins, pyloria, ceilicas, mycoplasma pneumoniae to start, and you may want to check the pandas board on occasion. Besides the helpfull info over here!

[jewels]

If you notice an increase in tics with a strep infection then it may be a good idea to rule out PANDAS as a possible cause.

 

Not trying to argue but i totally disagree.. My son would be tic free..... I would see a tic start,, get swabbed, pos on strep, get antibiotics and tics are GONE!!

For us Tics would completeley remit after by 4th week post biotics..... I'd get oppostional behavior and walking on eggshells but that could be because they are sick...

IE the sneezing girl( it is just one repetative tic) doesn't have strep, i believe she has Mycoplasma pneumoinae..

For us with this last onset ,,,,we saw a doc the day before his tics started...he said he didn't feel good, and everything from the neck up was red, swollen, fluids, shiners, slight conjestion doc said, neg on quick test...Woke up the next day a ticker.....i just think it is so odd we saw a doc the day before?????

Still persuing other illnesses.

 

From my experience,I'm saying strep makes you just tic. Pandas/pitands is not just strep.

Maybe check out some of Dr T's thoughts/threads He has come up with a couple new accronyms, cute.

 

Unless you are saying rule out as in, persue it till you can com;etely eliminated it as an option...that i would agree too....but now there are whole list of illnesses and i bet more to come,,,check herpes, lymes, epsteins, pyloria, ceilicas, mycoplasma pneumoniae to start, and you may want to check the pandas board on occasion. Besides the helpfull info over here!

 

 

 

Hi Fixit,

 

Bev and I live in the UK and our health service has a very different view on treating children who present with symptoms of tics. It's a gentle approach of monitoring for 12 months to rule out very common transient tics and for a dx of TS. Very few have heard of pandas/pitands.

 

If we went to the drs asking for all these tests, they would think that we were "raving mad moms"! To see a specialist can take along time, and they would often want to know on what grounds you think that your child needs the tests for. The Drs here do not like to do invasive tests on children if they see no reason to do so. I believe as bev is new to this journey she now has to gather the evidence just in case it is pandas, and then have a justified reason to approach the gp to see a specialist.

 

I don't think that it would be fair to say that abx can stop tics dead. If...it is pandas then I was trying to give a balanced view of the fact you need to find the right abx that your child responds to, and to remember even though our childrens tics cease on abx some pandas children only improve.

If your child has a strep throat infection here, then you will only get a prescripton for a 5 day course of abx. Some of the pandas children are only showing improvements at around this stage of treatment.

 

I was trying to give basic advice about the onset that most see with this condition, and also what our Drs would ask too. As her child is only having the tic symptoms then a gentle, balanced start maybe the most positive way to go. In fact in this country it's required. Our case was different, my dd would explode into a different child a few days into an infection, and our dr could see a clear unusual pattern, he was aware of pandas and we were lucky to have one of the few that do know of this condition.

 

If however, a noticed change is seen with the onset of infection of any kind, then it is the right time to follow the evidence/specialist road.

 

I have seen quite a few children with transient tics that often start with a change in lifestyle, like starting high school. These childrens tics settle when their stress levels lower. This is what the Uk drs will be looking for.

 

If changes are noticed with a trial of abx (or even different abx) and a noted improvement in the 5 days, then it is time to take the next steps of reading up on the causes. A positive dx needs to have positive results to back it up. I was just advising bev to take the first steps and keep an open mind while doing so, unless she is blessed to find that one rare Dr that will listen and try abx/steroid just in case it could be autoimmune related.

 

It's a beautiful country that we live in, but we are wrapped up in red tape with a bow on top

 

PS.... Plan two, you could send one of the PANDAS Drs over as we are in very short supply

[Fixit]

If you notice an increase in tics with a strep infection then it may be a good idea to rule out PANDAS as a possible cause.

 

Not trying to argue but i totally disagree.. My son would be tic free..... I would see a tic start,, get swabbed, pos on strep, get antibiotics and tics are GONE!!

For us Tics would completeley remit after by 4th week post biotics..... I'd get oppostional behavior and walking on eggshells but that could be because they are sick...

IE the sneezing girl( it is just one repetative tic) doesn't have strep, i believe she has Mycoplasma pneumoinae..

For us with this last onset ,,,,we saw a doc the day before his tics started...he said he didn't feel good, and everything from the neck up was red, swollen, fluids, shiners, slight conjestion doc said, neg on quick test...Woke up the next day a ticker.....i just think it is so odd we saw a doc the day before?????

Still persuing other illnesses.

 

From my experience,I'm saying strep makes you just tic. Pandas/pitands is not just strep.

Maybe check out some of Dr T's thoughts/threads He has come up with a couple new accronyms, cute.

 

Unless you are saying rule out as in, persue it till you can com;etely eliminated it as an option...that i would agree too....but now there are whole list of illnesses and i bet more to come,,,check herpes, lymes, epsteins, pyloria, ceilicas, mycoplasma pneumoniae to start, and you may want to check the pandas board on occasion. Besides the helpfull info over here!

 

 

 

Hi Fixit,

 

Bev and I live in the UK and our health service has a very different view on treating children who present with symptoms of tics. It's a gentle approach of monitoring for 12 months to rule out very common transient tics and for a dx of TS. Very few have heard of pandas/pitands.

 

If we went to the drs asking for all these tests, they would think that we were "raving mad moms"! To see a specialist can take along time, and they would often want to know on what grounds you think that your child needs the tests for. The Drs here do not like to do invasive tests on children if they see no reason to do so. I believe as bev is new to this journey she now has to gather the evidence just in case it is pandas, and then have a justified reason to approach the gp to see a specialist.

 

I don't think that it would be fair to say that abx can stop tics dead. If...it is pandas then I was trying to give a balanced view of the fact you need to find the right abx that your child responds to, and to remember even though our childrens tics cease on abx some pandas children only improve.

If your child has a strep throat infection here, then you will only get a prescripton for a 5 day course of abx. Some of the pandas children are only showing improvements at around this stage of treatment.

 

I was trying to give basic advice about the onset that most see with this condition, and also what our Drs would ask too. As her child is only having the tic symptoms then a gentle, balanced start maybe the most positive way to go. In fact in this country it's required. Our case was different, my dd would explode into a different child a few days into an infection, and our dr could see a clear unusual pattern, he was aware of pandas and we were lucky to have one of the few that do know of this condition.

 

If however, a noticed change is seen with the onset of infection of any kind, then it is the right time to follow the evidence/specialist road.

 

I have seen quite a few children with transient tics that often start with a change in lifestyle, like starting high school. These childrens tics settle when their stress levels lower. This is what the Uk drs will be looking for.

 

If changes are noticed with a trial of abx (or even different abx) and a noted improvement in the 5 days, then it is time to take the next steps of reading up on the causes. A positive dx needs to have positive results to back it up. I was just advising bev to take the first steps and keep an open mind while doing so, unless she is blessed to find that one rare Dr that will listen and try abx/steroid just in case it could be autoimmune related.

 

It's a beautiful country that we live in, but we are wrapped up in red tape with a bow on top

 

PS.... Plan two, you could send one of the PANDAS Drs over as we are in very short supply

 

No worries....and thanks for informing me how your system works....waiting a year to start to figure things out,,,i feel for you guys. i come to this board everyday to see if the cure was found and i missed the announcement overnight!!! At least on a good note it seems like every couple of months there are some new ideas that come about via the great people on these boards.

Do you have alot of ts in the UK? more than 1 per thousand as they say here?

And for my ds it wouldn't be gone in one night...it would be like a rock star till we started anti's and then after about 5-7 days start to see it deminish and be gone by 4 weeks....that was a lovely time, it wish it were back

[jewels]

Hi Fixit,

 

So when are you going to post us a PANDAS Dr. Anyone will do!

 

That is a really good question that you asked about TS rates in the UK - Going to ring TSA here and find out.

 

Our Drs here are so polite that they apologise before they take a blood test.

 

We do have a wonderful Health Care System that is free and open to everyone (paid by all taxpayers), so all have treatment regardless of financial status. However it is "cost effective" managed and any expensive treaments like IVIG are very limited. It can also be very slow.

 

Anything that is an Alternative Approach (TS/PANDAS/ASD) to treatment is also quite frowned upon. That is why the Brits" are finding this forum a breath of fresh air. They do like to medicate us! But i think it's to shut us up

 

Take care

jules

[Chemar]

Our Drs here are so polite that they apologise before they take a blood test.

 

We do have a wonderful Health Care System that is free and open to everyone (paid by all taxpayers), so all have treatment regardless of financial status. However it is "cost effective" managed and any expensive treaments like IVIG are very limited. It can also be very slow.

 

Anything that is an Alternative Approach (TS/PANDAS/ASD) to treatment is also quite frowned upon. That is why the Brits" are finding this forum a breath of fresh air. They do like to medicate us! But i think it's to shut us up

 

Take care

jules

 

 

lololol

 

I can attest to the excellent public HealthCare System in the UK

I'm a South African Brit who studied, and lived there for a number of years (in London)

 

I did find some good alternative doctors there too tho. Even saw a guy on Harley Street once who prescribed homeopathic sulphur pillules for a maddening allover body weird itchiness that I was experiencing at the time

 

those pillules worked within a few days and I have never had that itch again!

 

but it seemed the alternative docs were primarily private (and like here, often very pricey!!!!!!! ) because they are few and far between and many desperate people who really prefer to take a more natural approach to health and healing

 

 

but yes, re the NHS...they all seemed to be "by the textbook" as did the institutions that taught them. I did some tutoring while at univ in London, and so met some of the medical students and teachers. Very little lateral thought beyond the pills to fix all ails approach, and most alternative medical thinking roll-eyed as "quackery"

 

it is great that you are trying to advocate there Jules!

all it will take is for you to convince one doctor there who already thinks a bit out of the box to start reading here and the other places with info and you may start a movement

[jewels]

Cheri,

 

Thankyou for giving such a accurate insight into our Health Service.

 

Yes our DAN hospital is very expensive, but it's worth every penny and sacrifice.

 

We have just been to see an Allergy Specialist in the NHS. He was pro DAN! I almost fell off the chair!

 

He said that her methods were working well, and if it works then don't change anything

He was kind enough to write to her and inform her that we carry on with the DAN treatment. This is the very first time an NHS DR has done this. (What a STAR).

 

He was very worried though about the antibiotics and the effect it will have on dds guts and her immune system. This is a great worry for me too. We are now fighting more and more infections, but on the massive plus side, it has given us back our 7 year old child rather than the 3 year old temper tantrum, can't get through to 3 year old that we had.

 

More and more people here are now exploring the alternative route rather than living with the side effects of modern medicine. And as my DAN says "lots of medicine starts its life as a plant". I just hope the NHS start to take a more biomedical approach to healing. However we now have a few NHS biomedical units in local hospital. Times are changing.

 

Thanks again

Jules

[JensOfSweden]

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.

 

You don't say how much B-vitamins he takes but you can increase the taurin up to 1,5 g/day I would say for a kid. ######, I'm 30 and I can take 5 g without a problem, there's really no side effects to taurin.

 

Don't up the magnesium, it should be sufficient. Cut candy, cut caffeine.

[Chemar]

oooh I am not so sure it is wise to take that much taurine, especially for a child

 

we have reports on this forum of taurine having negative effects for some people and there are some indications that it can have side effects in large doses too

http://www.ehow.com/about_4685859_side-effects-taurine.html

Warning

1. Because taurine may lower cholesterol, blood pressure and blood sugar, people taking medications to achieve these goals should talk to their doctor before taking taurine supplements. Taurine also may act as a blood thinner, so anyone taking anticoagulants also should speak to a doctor if considering supplements. Physicians also advise people with epilepsy and anyone with bipolar disorder to avoid adding extra taurine to their diets.
   

 

iHerb suggests safety tests have only gone up to 3 gm daily

http://healthlibrary.epnet.com/GetContent....;chunkiid=21793

 

our physician told us not to go above 500mg a day when my son was on it

 

it is very beneficial, but as with all things, taking too much is not a good idea and doesnt necessarily help more

[faith]

Fixit,

could you give an update on the things you did with Brain Balance? did you feel this had any positive effect on your son? did it help with tics?

 

I was set to do this a little while back, but decided to put it on hold.

 

thanks

Faith

[Fixit]

Just happened to check over here....i tried to pm you last night...anyway..

 

Yah...i don't know.....TODAY....is the worst day EVER....so looking back on anything is good.....

I would say it seemed llike it helped with his ADHD sypmtoms.???? or could have been just that he was getting older at that time....

THey do a combo of aminos, vitamins exercises...lights and we concurrently went gfcf for those 3 months......

I will tell you......i long for that time frame......and things were miminal....SO i don't know...he wasn't completely healed...but if i could say at that time things were alot better and people did comment on ds general overall deminor!!!!

we re-elimnated milk about a month ago...as per allergy season....and just today...since we can't go outside, we reintroduced some of the exercises..

 

i am mixed.....they were also very nice and mean well....and i think some have had actual benefits...as i have talked to a few parents....

i wonder if it is like everything else.....what works for one doesn't work for the other....

and the more i KNOW.....the more i realize there must be a thousand variables...and it's like trying to figure out a locker combinatoin...

 

celiacs, dairy, allerageis, chroones,yeast, strep, ebv, tmj,corn, vitamin, d,b,,c, iron, etc,,,aminos,,minerals and all of their independent lists, toxins, mercury, arsenic, parasited, dental work, fillings, food sensitivities, chemical senstivites,, cranial therapy, acupuncture, homeopathy, abxs.. immuglobines

naet, lymes...I mean REALLY....

Now ,,,more than likely with these kids you more than likely have a combo...now find the 2, 3

i was aslo thinking of calling them next week ....to ping pong some ideas...

if anyone wants to pm me we can talke.....

 

Fixit,

could you give an update on the things you did with Brain Balance? did you feel this had any positive effect on your son? did it help with tics?

 

I was set to do this a little while back, but decided to put it on hold.

 

thanks

Faith