tics and more

[mmrm]

Hello, I have been reading these forums for quite a long time and it is very helpful.

 

This is my first post. My son has had tics for two years now. We have done neurofeedback, homeopathy and osteopathy and regarding food and his diet, he is allergic to or intolerant for eggs, dairy, soy, peanuts and gluten. He gets supplements, also for his intestines which appeared to be very bad (leaky gut).

 

I also read about PANDAS and I recognized many signs, i.e. night-bedwetting, separation anxiety, handwriting problems and so on. A couple of weeks ago he tested positive to streptococci and a certain pneumoniae. It looks like the antibodies work the way it has been described. We just started antibiotics, prescribed by an experienced doctor.

 

Well I have many questions, but as a start I would like to ask you about the supplements, it looks like Bonnie Grimaldi has the right ones. And how are your experiences with antibiotics?

 

Best wishes, Richard

[kim]

Richard,

 

Wondering if you have read anything about this?

 

http://cat.inist.fr/?aModele=afficheN&cpsidt=16390224

Mycoplasma pneumoniae infection and Tourette's syndrome

 

Good that you are looking at strep too. Have you visited the PANDAS forum here?

 

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

 

We have used Bontech vits for years. I do think they are very good overall, but as far as what vit is exactly right for your child, well that can be tricky. Some may not be able to handle the amt of vit B, for example (for some it maybe too high). I have a hard time getting enough of them into my youngest son to have him get the recommended daily of some of the stuff in them, so in that respect, they are not the best for him. You may be able to get your reg Dr. to test your sons zinc and copper levels. Since most are aware of Wilson's disease and a relationship to movement disorders, they seem not to have a problem with testing these things. My boys run low zinc. There are so many things to consider like your sons diet, etc. It's always hard rec a particular vit. If you go with Bontech, start low and gradually increase. We saw "hyper" at first, which I still attribute to the B vits.

[mmrm]

Hi Kim,

 

Thanks for the information. Apart from the streps he has been tested positive for chlamydophila pneunomiae instead of mycoplasma. But then again.

 

The main question is what the biggest trigger is now. These PANDAS or lack of specific vitamines? He gets a lot like the B's and zinc and magnesium and so on, but I will check again. And of course many other reasons could be there.

 

Combined with the antibiotics he also has probiotics and prebiotics.

 

Thanks again and please let me know about your children.

 

Richard

[Chemar]

Hi Richard and welcome

 

just wanted to also leave you the link to our PANDAS forum in case you need it as well.

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

 

my son has genetic Tourette Syndrome and Chrohn's Disease and I have also been reading a lot of info on theory that mycoplasma pneumoniae may trigger some Crohn's onset

 

He also has OCD and has had an aversion to giving blood for a while now so has not been tested for any pneumoniae infection, but he had bloodwork and cultures done when we suspected PANDAS in 2001 and we were told he was -ve

 

Correct supplements and diet have made a world of difference to his condition(s) and he also benefits greatly from acupuncture. we have never used the BonTech supps, but I based my son's initial treatment plan on the old formula that Bonnie had posted about that helped her loved one many years ago, long before she had BonTech. I know magnesium supplementation (oral and transdermal) has been key in reducing my son's tics, and the addition of other supps that he needed helped maintain that and also keep his OCD low and manageable. In the past that was far more bothersome to him than just his tics alone ( I have a thread in my signature link that tells how we started out on a natural treatment plan for him)

 

I think treating both the strep infection as well as any deficiencies is a two pronged plan that can IMO only be beneficial, although you may find less than optimum effects from supps until the strep and pneumoniae is under control.

 

You may also want to look at the theory on PITANDS in addition to the PANDAS component

 

Kim is so right about starting supps low and then working up...also it helps to start individual supps one at a time so you can track progress or adverse reaction and so know which supps are helping and which may be a problem. My son cannot take high Bs in a B complex for example but benefits from some individual Bs and also has all the B's in his multi shake. If he takes B complex it isnt good for him. Also re omega3 from fishoil....he and many kids with TS seem to tic more with fishoil supps(even tho they can eat fish without problem) and so we use flaxseed oil instead

 

those are just examples of individual variations so where most TS kids will do great on the BonTech supps, some may react to one or more of the individual ingredients. But if your child responds well to them, it is a great way to take the problems out of having to find the right combinations

 

hope things start to improve soon for your child.

[mmrm]

Hi Richard and welcome

 

just wanted to also leave you the link to our PANDAS forum in case you need it as well.

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

 

my son has genetic Tourette Syndrome and Chrohn's Disease and I have also been reading a lot of info on theory that mycoplasma pneumoniae may trigger some Crohn's onset

 

He also has OCD and has had an aversion to giving blood for a while now so has not been tested for any pneumoniae infection, but he had bloodwork and cultures done when we suspected PANDAS in 2001 and we were told he was -ve

 

Correct supplements and diet have made a world of difference to his condition(s) and he also benefits greatly from acupuncture. we have never used the BonTech supps, but I based my son's initial treatment plan on the old formula that Bonnie had posted about that helped her loved one many years ago, long before she had BonTech. I know magnesium supplementation (oral and transdermal) has been key in reducing my son's tics, and the addition of other supps that he needed helped maintain that and also keep his OCD low and manageable. In the past that was far more bothersome to him than just his tics alone ( I have a thread in my signature link that tells how we started out on a natural treatment plan for him)

 

I think treating both the strep infection as well as any deficiencies is a two pronged plan that can IMO only be beneficial, although you may find less than optimum effects from supps until the strep and pneumoniae is under control.

 

You may also want to look at the theory on PITANDS in addition to the PANDAS component

 

Kim is so right about starting supps low and then working up...also it helps to start individual supps one at a time so you can track progress or adverse reaction and so know which supps are helping and which may be a problem. My son cannot take high Bs in a B complex for example but benefits from some individual Bs and also has all the B's in his multi shake. If he takes B complex it isnt good for him. Also re omega3 from fishoil....he and many kids with TS seem to tic more with fishoil supps(even tho they can eat fish without problem) and so we use flaxseed oil instead

 

those are just examples of individual variations so where most TS kids will do great on the BonTech supps, some may react to one or more of the individual ingredients. But if your child responds well to them, it is a great way to take the problems out of having to find the right combinations

 

hope things start to improve soon for your child.

[mmrm]

Hi, thanks, also for the info.

 

I will read much more about PANDAS and PITANDS the next few days. We just started antibiotics a week ago.

 

And I will carefully go through all the details about vitamins and minerals, a big puzzle. We really wonder if our son has a right uptake for the ones he already gets.

 

All the best to you and your son.

 

Richard

[mmrm]

Hello.

And now what? The 3 weeks antibiotics werd done, the doctor says it could take some more time before results from streps and pneumoniae could be seen. Regarding tics there are improvements, although head shaking is still bad. Another therapist keeps on warning me about borreliose. He has been tested negative but through Elisa so we cannot be sure.

We go on with supplements. Any other advice is very welcome.

Richard

[colleenrn]

Hi Richard,

The pneumonia your son was diagnosed with is an atypical pneumonia, similiar to mycoplasma pneumonia. I was wondering what antibiotic your son was on?

Colleen

[mmrm]

Hi Colleen,

It is from a German specialised professor and I think it is also German antibiotics called Pädiathrocin.

Richard