Dr says it will never go away

[melanie]

Hi everyone thanks for reading my post and for being here im sad today

 

Well I called the dr to ask about the tenex she raised the dossage to 3mg daily she says thats even a low dose and I should try a neuroleptic again any way I asked her when will this get a little better and she said never i ALMOST DIED i thought this would at some point get a little better should i continue with a dr whho has no hope or listen to drs who have me try a million different things maybe I dshould start him on a different diet I need instructions exactly what to do Should i have him allergy tested he has a dan dr good one should he be testing for something or should I just give into tourettes and the cursing and anger what should I do I am not any further with this then i was 1 yr ago maybe worse

 

Melanie

[Chemar]

my goodness what an insensitive doctor

 

((((((((((((((Melanie))))))))))))))))

 

if your child has tourette syndrome then yes, there is no current "cure"...... but so many kids, including my son, do show marked improvement with a variety of treatments, and many people do find that as they grow out of the teen years, their tics get so much less or even seem to stop.

 

honestly my son's tics and OCD/mood issues were at their very worst when he was on the meds

 

we did not see the full benefits of supplementing and dietary changes until the drugs were out of his system

 

 

if he already has a good DAN doctor I am puzzled why you are still going to the other one?

 

does your child have a clear TS diagnosis? has he been checked for PANDAS, food allergies etc?

forgive me if you have already posted these things as I sometimes struggle to remember each member's history here.

 

there is a level of "acceptance" that needs to come with a TS diagnosis, in that yes, it is possible that tics will not ever totally go away. But that is not the same as accepting a SEVERE diagnosis....my son is living proof that things can get much much better. when he was 10-11 yo his TS/OCD ruled his life and really did "disable" him....withing a few months of starting the natural treatments after weaning him off the meds he showed such a major improvement that many people were astounded at how much better he was and now, tho he still tics, yet some people meeting him for the first time dont even know he has a tic disorder. the neurologist proclaimed all kinds of doom and gloom when I informed him that another doc was helping us wean my son off the meds..............sure proved him wrong

I really hope you will maybe explore the options with the DAN doc more

 

do be encouraged Melanie:) there is always hope

[melanie]

Hi

He is being treated for suspected Pandas from dan dr zithro 250 started less than 1 month ago. Neurologist from Columbia Presp in NY is helping with school He is on Home instruction and has to have neuro to get him out He also has ASD . I havve tried Bonnies vitamines but hes sensitive to folic and Bcomplex so I have to seperate Hes on Taurine ,B6 ,flax seed (sensitive ti fish oil) Inositol,mag,

He goes to therapy , has a tutor,accupuncture Im thinking of biofeedback

 

Tenex 3mg and buspar 20 mg for anxiety Im stressed overwhelmed depressed and just plain sad ! Oh yea and angry!!! I love this boy more than anything but I just cant help him He gets mad at himself whenever he curses hates that hes calling me a B can u imagine

 

I wish this would get better Im afraid to take him off of anything Im afraid it will get worse He needs to go back to school he goes to work with my husband everyday its ok but he needs to go back to school

[Chemar]

sounds like you are doing so many good things for him Melanie

 

 

I hope the DAN doctor will be able to help more and bring relief

[faith]

Melanie,

If that was the only statement the doc made, it is somewhat close-minded. The truth is that many many doctors in the medical field just don't know the course that this will take, not just on tourettes, but many disorders. I'm not going to tell you it WILL go away, but it certainly is possible (and maybe probable) that things can get better. It all depends on the road you take. you have a good start so far. if you need to depend on meds for him for some issues, perhaps that will help. but you are also taking some steps in the way of natural treatments, and that is common sense stuff with diet and supplements. Things will get better when you get a handle on the things and you gain control. you may have to accept that your son has some problems, but in time you will find out what seems to make him somewhat better and vice versa, Take that knowledge as far as you can. Again, we are not proclaiming a cure here, altho many members have found the things that have an adverse effect on their kids, and then work on that. you never know what you may find.

 

Blessings,

Faith

[guy123]

A few things.

 

1. How old is this person with TS? Are you talking about yourself or your child? If it's a child, it may very well get significantly better as they approach adulthood as the brain matures and "corrects" itself. Some people even claim to have "outgrown" TS or tics that they had as a child. Now, if the tic started in adulthood, then it is probably permanent (based on what I've read).

 

2. Talk to your doctor about cycling off of Tenex and then starting over. If you're on it and then you adapt, you'll need higher and higher doses over time. Well, you can't keep increasing it forever. So discuss decreasing it (slowly, you can't just quit taking it all at once) until you're off of it completely, then wait until you're back to "baseline," and then begin again with a small dose. The beneficial effects *should* come back (theoretically) as you're reintroducing a substance into your body that you've no longer built up a tolerance to.

 

3. Stay away from neuroleptics unless your symptoms are so absolutely debilitating that you cannot function. The side effects from neuroleptics can be worse than TS, and in some cases they are permanent.

 

4. Support medical research. TS is theoretically curable, or at least better medications can be developed that will mask all symptoms without side effects. They just haven't been invented yet. Remember that medical science, like technology, progresses exponentially. "Medicine" 100 years ago was barbaric compared to today. Computers 20 years ago were terrible compared to today. I imagine that in another 50 years there will be treatments that we can't even begin to imagine today. Stem cell and neuroscience research has the potential to cure diseases that we currently don't even understand. Imagine having TS symptoms be 100% controlled by an injection of nanoprobes which go into the brain and correctly modulate dopamine. Or imagine curing it entirely with a stem cell injection that regrows the defective parts of the basal ganglia. TS gone. It's a million times better than the drugs we use now, some of which permanently change brain function in harmful ways (neuroleptics) that scientists don't even fully understand. Assuming you're talking about a young child in your post, even if he doesn't outgrow TS by adulthood, I imagine that in that time period better treaments will have been developed.

 

Oh and check out my site for a list of all the TS medications I have been able to find so far: http://www.tourettestreatment.com It may give you other options and things to discuss with your doctor.

[melanie]

A few things.

 

1. How old is this person with TS? Are you talking about yourself or your child? If it's a child, it may very well get significantly better as they approach adulthood as the brain matures and "corrects" itself. Some people even claim to have "outgrown" TS or tics that they had as a child. Now, if the tic started in adulthood, then it is probably permanent (based on what I've read).

 

2. Talk to your doctor about cycling off of Tenex and then starting over. If you're on it and then you adapt, you'll need higher and higher doses over time. Well, you can't keep increasing it forever. So discuss decreasing it (slowly, you can't just quit taking it all at once) until you're off of it completely, then wait until you're back to "baseline," and then begin again with a small dose. The beneficial effects *should* come back (theoretically) as you're reintroducing a substance into your body that you've no longer built up a tolerance to.

 

3. Stay away from neuroleptics unless your symptoms are so absolutely debilitating that you cannot function. The side effects from neuroleptics can be worse than TS, and in some cases they are permanent.

 

4. Support medical research. TS is theoretically curable, or at least better medications can be developed that will mask all symptoms without side effects. They just haven't been invented yet. Remember that medical science, like technology, progresses exponentially. "Medicine" 100 years ago was barbaric compared to today. Computers 20 years ago were terrible compared to today. I imagine that in another 50 years there will be treatments that we can't even begin to imagine today. Stem cell and neuroscience research has the potential to cure diseases that we currently don't even understand. Imagine having TS symptoms be 100% controlled by an injection of nanoprobes which go into the brain and correctly modulate dopamine. Or imagine curing it entirely with a stem cell injection that regrows the defective parts of the basal ganglia. TS gone. It's a million times better than the drugs we use now, some of which permanently change brain function in harmful ways (neuroleptics) that scientists don't even fully understand. Assuming you're talking about a young child in your post, even if he doesn't outgrow TS by adulthood, I imagine that in that time period better treaments will have been developed.

 

Oh and check out my site for a list of all the TS medications I have been able to find so far: http://www.tourettestreatment.com It may give you other options and things to discuss with your doctor.

 

 

 

Hi yes my son is almoset 15 and as far as Im concerned its pretty bad !! Im wondering if I should ask his dan dr for some de yeasting meds? what do you think can it hurt ?

[Chemar]

hi Melanie

 

you can treat "yeast" candida without meds

there are good supplements that help along with a careful diet

 

good book is "the Yeast syndrome" by Walker & Trowbridge

we like Candida Clear supplement by NOW

[melanie]

hi Melanie

 

you can treat "yeast" candida without meds

there are good supplements that help along with a careful diet

 

good book is "the Yeast syndrome" by Walker & Trowbridge

we like Candida Clear supplement by NOW

 

 

Isit ok to use the Candida Clear supplement by NOW along with the meds and with the other supps Im waiting for his nuro dan dr to call what should i ask him

[kim]

Melanie,

 

I just scanned the thread, but long term use of zith, can it affect liver enzymes (i think)? You might want to pop over to the PANDAS forum and ask there. One of the ingredients in Candida Clear can affect phase 1 or 2 of liver function, can't remember which right now. I would be sure to ask your Dr. about that, and have the ingredients handy. I think it's grapefruit seed extract, but i can't seem to come up with my bottle of it right now.

[Healthnut]

My kids were mis-diagnosed with Tics and A.D.D.

3-4 years later found out they had P.A.N.D.A.S.

Check out this website for Dr. K. he really know his stuff!! http://www.webpediatrics.com/pandas.html

Hope this helps. God bless.

[Chemar]

Melanie,

 

I just scanned the thread, but long term use of zith, can it affect liver enzymes (i think)? You might want to pop over to the PANDAS forum and ask there. One of the ingredients in Candida Clear can affect phase 1 or 2 of liver function, can't remember which right now. I would be sure to ask your Dr. about that, and have the ingredients handy. I think it's grapefruit seed extract, but i can't seem to come up with my bottle of it right now.

 

Hi Kim

 

I am not seeing grapefruit seed extract in candida clear ingredient list (I know that grapefruit is contraindicated with many meds tho)

Candida Clear has caprylic acid (magnesium caprylate), Pau D'Arco, BlackWalnut, oregano oil as main ingredients and others are cellulose, rice flour, gum arabic, garlic, olive leaf, cats claw root, wormwood, mag stearate

 

 

Melanie, as with all supplements...if taking any medications one should always check with the prescribing doctor as to whether it is safe to take them together

 

[EAMom]

Melanie...the immunologist (and also the rheumatologist) we saw did not seem concerned about keeping my dd on Azith. long term (multiple years). Currently she is on 250mg/day (weighs about 55 pounds). I can't imagine that a 1-2 mo. trial of Azith. would cause a problem. However, if you are concerned, you could always have the doc run a liver panel.

 

I don't know about combining the Azith. with a bunch of other drugs (and its impact on liver function). My dd is on 10mg prozac, Azith, Ibuprofen (200mg/day), probiotic, multi-vit and the docs are not concerned...I don't know about the drugs your son is on though.

 

I know remember something about tylenol causing liver problems so I would for sure stay away from that.

 

Does anyone have experience with using SAMe to help protect the liver? Maybe Chemar or Kim would know more... I know it is widely used in veterinary medicine for that (help with liver dz) purpose...don't know if human medicine has caught on yet. Maybe I will ask the immunologist about that if I remember at the next visit.

 

http://www.lef.org/magazine/mag97/june-report972.html

...that is an older article...there may be more recent stuff on SAMe and liver if you google around. SAMe is also supposed to have a beneficial effect on mood...not sure about using it in tourettes or PANDAS. Something to look into I guess.

[melanie]

Melanie...the immunologist (and also the rheumatologist) we saw did not seem concerned about keeping my dd on Azith. long term (multiple years). Currently she is on 250mg/day (weighs about 55 pounds). I can't imagine that a 1-2 mo. trial of Azith. would cause a problem. However, if you are concerned, you could always have the doc run a liver panel.

 

I don't know about combining the Azith. with a bunch of other drugs (and its impact on liver function). My dd is on 10mg prozac, Azith, Ibuprofen (200mg/day), probiotic, multi-vit and the docs are not concerned...I don't know about the drugs your son is on though.

 

I know remember something about tylenol causing liver problems so I would for sure stay away from that.

 

Does anyone have experience with using SAMe to help protect the liver? Maybe Chemar or Kim would know more... I know it is widely used in veterinary medicine for that (help with liver dz) purpose...don't know if human medicine has caught on yet. Maybe I will ask the immunologist about that if I remember at the next visit.

 

http://www.lef.org/magazine/mag97/june-report972.html

...that is an older article...there may be more recent stuff on SAMe and liver if you google around. SAMe is also supposed to have a beneficial effect on mood...not sure about using it in tourettes or PANDAS. Something to look into I guess.

 

Hi whats the prozac for OCD does it work? Danny needs a OCD med or sup Hes sick I thought it was strep but yea itts not!!

[EAMom]

The prozac is for OCD/anxiety from PANDAS. She was put on it last May when PANDAS was very bad (before we discovered Azith.). It may not be totally necessary now but we are keeping her on it as insurance "just in case". Her mood is very good. I also think it helps with some pre-existing (likely non-pandas) social anxiety (nervousness about speaking to adults etc.). I think it keeps her eating better (PANDAS caused anorexia nervosa in dd) when she has these mini-episodes (when sister gets strep, when she got 5th's).