Tics and restless leg syndrome?

[BikeWP]

Hi

I was wondering if tics and restless leg syndrome go hand and hand? My son is 11 and tics seem to be getting worse. We have stopped dairy and it really hasn't seemed to help. We are on all the supplements that are suppose to help but I have not seem a change. We have done blood work and nothing really sticks out... We really watch his food intake and try to eat organic as much as possible. His tics seem to bother him at night the most, when he is trying to rest. I have noticed, too that my daughter who is 8 starting to get tics. The eye rolling has started...

Do Bonnie's vitamins help? We have tried Tic Tamer...NOT sold on that at all...I also bought the Tics and Tourette's book (natural remedies).

I really need some help here...any comments would greatly be appreciated. I feel terrible for him, he is very frustrated and HATES his tics. We live in Colorado...any Dr's you recommend other than the natural ones?(we have tried them)

Thanks for listening

-Laura

[technodad]

Hi

I was wondering if tics and restless leg syndrome go hand and hand? My son is 11 and tics seem to be getting worse. We have stopped dairy and it really hasn't seemed to help. We are on all the supplements that are suppose to help but I have not seem a change. We have done blood work and nothing really sticks out... We really watch his food intake and try to eat organic as much as possible. His tics seem to bother him at night the most, when he is trying to rest. I have noticed, too that my daughter who is 8 starting to get tics. The eye rolling has started...

Do Bonnie's vitamins help? We have tried Tic Tamer...NOT sold on that at all...I also bought the Tics and Tourette's book (natural remedies).

I really need some help here...any comments would greatly be appreciated. I feel terrible for him, he is very frustrated and HATES his tics. We live in Colorado...any Dr's you recommend other than the natural ones?(we have tried them)

Thanks for listening

-Laura

 

 

My son complains his legs hurt alot, especially at night. Thought it was growing pains but maybe is related to the tics instead.

[deby]

I think it's always like that when they try to rest, the tics are the worst. Been tired is also a trigger for tics.

It is hard to see them suffering, I'm going through the same thing.

The challenge is to find what are the triggers for your son.

Start keeping a log, write what he ate, what he did, if he was mostly indoors/outdoors, screen time, stress etc.

And keep reading.

For my son we discovered that chlorine (pools) was a big trigger as well as dopamine increased foods like bananas and corn.

Hopefully it helps, good luck!

[blakes_mom]

Hi

I was wondering if tics and restless leg syndrome go hand and hand? My son is 11 and tics seem to be getting worse. We have stopped dairy and it really hasn't seemed to help. We are on all the supplements that are suppose to help but I have not seem a change. We have done blood work and nothing really sticks out... We really watch his food intake and try to eat organic as much as possible. His tics seem to bother him at night the most, when he is trying to rest. I have noticed, too that my daughter who is 8 starting to get tics. The eye rolling has started...

Do Bonnie's vitamins help? We have tried Tic Tamer...NOT sold on that at all...I also bought the Tics and Tourette's book (natural remedies).

I really need some help here...any comments would greatly be appreciated. I feel terrible for him, he is very frustrated and HATES his tics. We live in Colorado...any Dr's you recommend other than the natural ones?(we have tried them)

Thanks for listening

-Laura

Hi Laura my son had sudden onset tics(blinking and eye rolling. He was diagnosed with pandas. Have you looked into this disorder yet? My sons tics have cleared with a tonsilectomy and adenoidectomy and long term antibiotics.

[Chemar]

Where I agree it is always a good idea to check on possible PANDAS/PANS or other infection trigger for tics, I do need to point out again that not every child that has a sudden onset of tics has PANDAS

Genetic TS can also "switch on" suddenly too (especially at pre or puberty in boys when the surge of androgens may result in increased dopamine), as can any other trigger result in sudden tics eg exposure to an allergen, pesticide, mould etc etc etc etc etc

[BikeWP]

Where I agree it is always a good idea to check on possible PANDAS/PANS or other infection trigger for tics, I do need to point out again that not every child that has a sudden onset of tics has PANDAS

Genetic TS can also "switch on" suddenly too (especially at pre or puberty in boys when the surge of androgens may result in increased dopamine), as can any other trigger result in sudden tics eg exposure to an allergen, pesticide, mould etc etc etc etc etc

 

Any suggestions on what to do next? Do I need to see a neurologist for PANDAS? What about Genetic TS? Do they test for PANDAS and Genetic TS? We did see a pediatric neurologist when my son was about 7, all he said was "yes, he has tics." It very well could be Genetic TS, I was adopted and have no history of my birth parents or medical records.

Thanks so much for responding to my concerns, it sure does feel better talking to people who have gone through similar experiences.

It is frustrating not knowing. I feel like we are doing all the right things...vitamins, eliminating dairy, organic foods, epsom salt baths, monitoring his sugar intake...etc...list goes on...and on....

THANKS MUCH!!

[Chemar]

Neurologists are not the ones to see re PANDAS...they most often do not even acknowledge it!! and their answer to TS is usually to suggest prescription meds!

You may want to first read up on PANDAS to see if you think your child fits the profile http://www.pandasnetwork.org

 

There are no actual tests for TS other than genetic screening and that is still in experimental stages. It is usually based on clinical observation and family history

 

Do you have Sheila's book and have you read through the helpful threads? http://www.latitudes.org/forums/index.php?showtopic=2459

[BikeWP]

Neurologists are not the ones to see re PANDAS...they most often do not even acknowledge it!! and their answer to TS is usually to suggest prescription meds!

You may want to first read up on PANDAS to see if you think your child fits the profile http://www.pandasnetwork.org

 

There are no actual tests for TS other than genetic screening and that is still in experimental stages. It is usually based on clinical observation and family history

 

Do you have Sheila's book and have you read through the helpful threads? http://www.latitudes.org/forums/index.php?showtopic=2459

Yes, I have Sheila's book and really think it is great. Thanks! Any other books you recommend? BTW, I made an appointment to see if my son has PANDAS... Thank you

[technodad]

Neurologists are not the ones to see re PANDAS...they most often do not even acknowledge it!! and their answer to TS is usually to suggest prescription meds!

You may want to first read up on PANDAS to see if you think your child fits the profile http://www.pandasnetwork.org

 

There are no actual tests for TS other than genetic screening and that is still in experimental stages. It is usually based on clinical observation and family history

 

Do you have Sheila's book and have you read through the helpful threads? http://www.latitudes.org/forums/index.php?showtopic=2459

Yes, I have Sheila's book and really think it is great. Thanks! Any other books you recommend? BTW, I made an appointment to see if my son has PANDAS... Thank you

 

Is your apt with a Neurologists? We have an apt with a Neurologists who has treated kids for pandas with antibiotics and steriods

[Chemar]

technodad...just another word of caution..... STEROIDS are a big trigger for Tourette Tics as they have a dopaminergic effect so until you are certain that your child does not have TS, be very very careful about steroids! They do help with PANDAS, but are bad for TS

 

Honestly, while this neuro may know a little about PANDAS, you would be well served to ask on our PANDAS forum as to whether there is an actual PANDAS specialist in your area http://www.latitudes...hp?showforum=17

 

I am sure there are many great neurologists who are on the ball about all these things....but I have yet to meet one. The ones we have experienced are "old school" in their knowledge and approach and were only willing to treat TS with those awful meds with multiple side effects and considered all else "quackery'............hopefully your neuro is different but just be cautious and don't just accept everything they say as fact IMHO

[BikeWP]

technodad...just another word of caution..... STEROIDS are a big trigger for Tourette Tics as they have a dopaminergic effect so until you are certain that your child does not have TS, be very very careful about steroids! They do help with PANDAS, but are bad for TS

 

Honestly, while this neuro may know a little about PANDAS, you would be well served to ask on our PANDAS forum as to whether there is an actual PANDAS specialist in your area http://www.latitudes...hp?showforum=17

 

I am sure there are many great neurologists who are on the ball about all these things....but I have yet to meet one. The ones we have experienced are "old school" in their knowledge and approach and were only willing to treat TS with those awful meds with multiple side effects and considered all else "quackery'............hopefully your neuro is different but just be cautious and don't just accept everything they say as fact IMHO

Chemar-

Thanks so much for all of your help. I agree, with the experience we have had with a Neurologist, they do not know a heck of a lot about PANDAS or even tic disorder for that matter. We went to see a Neurologist a few years back and they didn't mention anything about PANDAS. He said my son had tics...and that was about as far as we got with the Neurologist visit. Complete waste of time.

I have researched PANDAS in the Colorado area and found a doctor currently on the medical advisory board of the PANDAS resource network. I have made an appointment with him. He is a homeopathic doctor that specializes in PANDAS. I am looking forward to meeting him.

Thanks again. I so appreciate latitudes.org, I really do from the bottom of my heart. Thanks everyone for help. It feels a lot better knowing we are not alone...

[jimTheBassPlayer]

Hi,

 

You say you had bloodwork done ... were his ferritin levels checked ? This my current focus, just posted a new thread about iron levels ... curious to get some feedback from parents on this. Restless leg syndrome is also a symptom of low iron so I'd certainly be interested in seeing if there is a correlation.

 

-Jim

[BikeWP]

Hi

I was wondering if tics and restless leg syndrome go hand and hand? My son is 11 and tics seem to be getting worse. We have stopped dairy and it really hasn't seemed to help. We are on all the supplements that are suppose to help but I have not seem a change. We have done blood work and nothing really sticks out... We really watch his food intake and try to eat organic as much as possible. His tics seem to bother him at night the most, when he is trying to rest. I have noticed, too that my daughter who is 8 starting to get tics. The eye rolling has started...

Do Bonnie's vitamins help? We have tried Tic Tamer...NOT sold on that at all...I also bought the Tics and Tourette's book (natural remedies).

I really need some help here...any comments would greatly be appreciated. I feel terrible for him, he is very frustrated and HATES his tics. We live in Colorado...any Dr's you recommend other than the natural ones?(we have tried them)

Thanks for listening

-Laura

Hi Laura my son had sudden onset tics(blinking and eye rolling. He was diagnosed with pandas. Have you looked into this disorder yet? My sons tics have cleared with a tonsilectomy and adenoidectomy and long term antibiotics.

[BikeWP]

Hi,

 

You say you had bloodwork done ... were his ferritin levels checked ? This my current focus, just posted a new thread about iron levels ... curious to get some feedback from parents on this. Restless leg syndrome is also a symptom of low iron so I'd certainly be interested in seeing if there is a correlation.

 

-Jim

His iron levels came back normal. Diagnosed with PANDAS. Starting the antibiotic/steroids today. Strep was extremely high along with his seasonal and food allergies. Low on mag and zinc.

[BikeWP]

Hi

I was wondering if tics and restless leg syndrome go hand and hand? My son is 11 and tics seem to be getting worse. We have stopped dairy and it really hasn't seemed to help. We are on all the supplements that are suppose to help but I have not seem a change. We have done blood work and nothing really sticks out... We really watch his food intake and try to eat organic as much as possible. His tics seem to bother him at night the most, when he is trying to rest. I have noticed, too that my daughter who is 8 starting to get tics. The eye rolling has started...

Do Bonnie's vitamins help? We have tried Tic Tamer...NOT sold on that at all...I also bought the Tics and Tourette's book (natural remedies).

I really need some help here...any comments would greatly be appreciated. I feel terrible for him, he is very frustrated and HATES his tics. We live in Colorado...any Dr's you recommend other than the natural ones?(we have tried them)

Thanks for listening

-Laura

Hi Laura my son had sudden onset tics(blinking and eye rolling. He was diagnosed with pandas. Have you looked into this disorder yet? My sons tics have cleared with a tonsilectomy and adenoidectomy and long term antibiotics.

Hi Blake's Mom

I want to reach out and thank you tons! My son just got his tests back today and just was diagnosed with PANDAS. I don't think I would have gone down that path if you didn't give me the heads up. My son starts his antibiotics/steroids today. I feel a lot of weight lifted off my shoulders...I know we have a long road ahead but at least I feel like we can move forward!! Sooooooo....THANK YOU BIG!!!!!