Vocal Tics - Very Inappropriate Language

[StillHopeful]

Hi -

 

just wondering if anyone has any good supplements or remedies for vocal/motor tics. Right now we are treating for PANDAS and he started an antibiotic a few days ago. He is also taking epsom salt baths and 3 tsp of inositol a day. If you can suggest anything that can be swallowed that is small it would be helpful. If you could post brand name and amt I would appreciate it greatly. Thanks a lot. Ngold24

Edited October 21, 2012 by Ngold24

[Chemar]

Hi

did the same doctor who diagnosed the TS also dx the PANDAS?

It is very possible that your child's symptoms are not related to TS but rather rooted in the infection/inflammation. If you start seeing improvement on the antibiotic, that should be a pretty clear sign that PANDAS is the primary dx

 

Occupational Therapy can be very helpful to kids with sensory dysfunction. A good book/website is The Out of Sync Child

[StillHopeful]

Hi

did the same doctor who diagnosed the TS also dx the PANDAS?

It is very possible that your child's symptoms are not related to TS but rather rooted in the infection/inflammation. If you start seeing improvement on the antibiotic, that should be a pretty clear sign that PANDAS is the primary dx

 

Occupational Therapy can be very helpful to kids with sensory dysfunction. A good book/website is The Out of Sync Child

 

Hi Chemar -

His neurologist diagnosed the TS and said it was probably PANDAS (his ASO #s were always high) and then he said no one treats PANDAS just TS. We continued to use him as our neuro but he wasn't very helpful about TS either. In fact, when I brought up the language issue the nurse pract said it wasn't a tic and my son was just being naughty. That is when I decided to find help elsewhere. I found a great psychologist who specializes in TS and I start to find out on the internet that there were protocols and drs who do treat PANDAS. So, I went to our pediatrician with Dr. S Schulman's protocal and asked him to follow it. He agreed about the PANDAS diagnosis but normally doesn't treat it.

 

I have been reading your older posts and what has helped your son. It is very interesting and you are such a great resource. Thanks a lot for your reply. Ngold24

[Chemar]

Sounds like that neuro and his nurse were totally clueless on both PANDAS & TS!

 

I see you have been posting on the PANDAS forum so should be getting good info there.

 

Please do keep us informed here too on your son's progress on the PANDAS treatment protocol

 

hope you see much improvement!

 

Have you tried the Natural Calm magnesium powder that is mixed with water or juice? perhaps your son would be willing to try that? as whatever the cause, magnesium really does seem to help a lot with tics.

 

here is that website for sensory dysfunction stuff

http://out-of-sync-child.com/

[evemac]

Hi Ngold 24,

 

We have seen an increase in our son's vocal tics this beginning in mid June, and we have FINALLY seen a decrease in the last week and a half. We even had almost an entire day without vocal ticcing!

 

Over the last month, here are some things that we've done:

 

1. Our son also has sensory issues which were formally diagnosed 2 years ago. He has been going to an OT every other week (they suggested every week, but our insurance would run out mid year if we did that). I would think this would be helpful as it sounds like your son has some high sensory issues.

 

2. We have increased his vitamin/supplements to twice a day. He takes the Nature's Vitality Calm (1/2 tsp), a multivitamin from Whole Foods, alternates every other day between taking an herbal supplement called Kid's Mellow Plus and then a stress anxiety supplement tincture, and almost a capful of Isotonix antioxidant.

 

3. We have avoided all chlorinated pools since July 4th. I let him swim for an hour 2 days ago, and his tics came back with a vengeance for the remainder of the day.

 

4. We have eliminated all unnatural sugar; he had a couple of a Whole Foods root beers and ginger ales over our vacation last week, but we've decided that those will go, too.

 

5. He had his first chiropractor appointment on Wednesday. She recommended adding beans to his diet, so we're going to try that as well. Might be good for your son since he doesn't care for meat. It makes me wonder about the whole Paleo diet, too and whether that's a good option.

 

6. We've had 2 biofeedback appointments, so it's too early to say whether this is helpful.

 

7. We changed his sunscreen to a non salycilate formula called KidSport All Terrain. My husband likes it, too!

 

8. We track all sorts of environmental factors EVERY day on a spreadsheet. It includes: car travel, TV (we do not do a lot of this), sun, sugar, chlorine, stress, exercise, quiet time, etc. If you're interested, I can reproduce the list for you.

 

9. We had already eliminated gluten, and now we're off cow's milk.

 

Hope this is helpful and best of luck!

Eve

[StillHopeful]

Hi Ngold 24,

 

We have seen an increase in our son's vocal tics this beginning in mid June, and we have FINALLY seen a decrease in the last week and a half. We even had almost an entire day without vocal ticcing!

 

Over the last month, here are some things that we've done:

 

1. Our son also has sensory issues which were formally diagnosed 2 years ago. He has been going to an OT every other week (they suggested every week, but our insurance would run out mid year if we did that). I would think this would be helpful as it sounds like your son has some high sensory issues.

 

2. We have increased his vitamin/supplements to twice a day. He takes the Nature's Vitality Calm (1/2 tsp), a multivitamin from Whole Foods, alternates every other day between taking an herbal supplement called Kid's Mellow Plus and then a stress anxiety supplement tincture, and almost a capful of Isotonix antioxidant.

 

3. We have avoided all chlorinated pools since July 4th. I let him swim for an hour 2 days ago, and his tics came back with a vengeance for the remainder of the day.

 

4. We have eliminated all unnatural sugar; he had a couple of a Whole Foods root beers and ginger ales over our vacation last week, but we've decided that those will go, too.

 

5. He had his first chiropractor appointment on Wednesday. She recommended adding beans to his diet, so we're going to try that as well. Might be good for your son since he doesn't care for meat. It makes me wonder about the whole Paleo diet, too and whether that's a good option.

 

6. We've had 2 biofeedback appointments, so it's too early to say whether this is helpful.

 

7. We changed his sunscreen to a non salycilate formula called KidSport All Terrain. My husband likes it, too!

 

8. We track all sorts of environmental factors EVERY day on a spreadsheet. It includes: car travel, TV (we do not do a lot of this), sun, sugar, chlorine, stress, exercise, quiet time, etc. If you're interested, I can reproduce the list for you.

 

9. We had already eliminated gluten, and now we're off cow's milk.

 

Hope this is helpful and best of luck!

Eve

 

 

Hi Eve -

 

Thank you very much for the information and advice. I would love to get a list of the items in your spreadsheet. I think it would be helpful in narrowing down his triggers. I am pretty sure sugar is one of them. The car is too but not sure why. Interesting about the chlorine. My DS was at a pool party and the next day he was ticing a lot. I thought it was from the cake but maybe it was the chlorine. Maybe both. Re the Nature's Vitality Calm, is that the powder or is it a liquid? We have the orange and my DS doesn't like it. What flavor are you using? I just chopped up a magnesium/cal/D pill for him into little pieces and he took that but it would be a lot easier if I had either a small pill or a liquid that he liked. Thanks again for yoru help! Ngold24

[evemac]

Hi Ngold 24,

 

We have seen an increase in our son's vocal tics this beginning in mid June, and we have FINALLY seen a decrease in the last week and a half. We even had almost an entire day without vocal ticcing!

 

Over the last month, here are some things that we've done:

 

1. Our son also has sensory issues which were formally diagnosed 2 years ago. He has been going to an OT every other week (they suggested every week, but our insurance would run out mid year if we did that). I would think this would be helpful as it sounds like your son has some high sensory issues.

 

2. We have increased his vitamin/supplements to twice a day. He takes the Nature's Vitality Calm (1/2 tsp), a multivitamin from Whole Foods, alternates every other day between taking an herbal supplement called Kid's Mellow Plus and then a stress anxiety supplement tincture, and almost a capful of Isotonix antioxidant.

 

3. We have avoided all chlorinated pools since July 4th. I let him swim for an hour 2 days ago, and his tics came back with a vengeance for the remainder of the day.

 

4. We have eliminated all unnatural sugar; he had a couple of a Whole Foods root beers and ginger ales over our vacation last week, but we've decided that those will go, too.

 

5. He had his first chiropractor appointment on Wednesday. She recommended adding beans to his diet, so we're going to try that as well. Might be good for your son since he doesn't care for meat. It makes me wonder about the whole Paleo diet, too and whether that's a good option.

 

6. We've had 2 biofeedback appointments, so it's too early to say whether this is helpful.

 

7. We changed his sunscreen to a non salycilate formula called KidSport All Terrain. My husband likes it, too!

 

8. We track all sorts of environmental factors EVERY day on a spreadsheet. It includes: car travel, TV (we do not do a lot of this), sun, sugar, chlorine, stress, exercise, quiet time, etc. If you're interested, I can reproduce the list for you.

 

9. We had already eliminated gluten, and now we're off cow's milk.

 

Hope this is helpful and best of luck!

Eve

 

 

Hi Eve -

 

Thank you very much for the information and advice. I would love to get a list of the items in your spreadsheet. I think it would be helpful in narrowing down his triggers. I am pretty sure sugar is one of them. The car is too but not sure why. Interesting about the chlorine. My DS was at a pool party and the next day he was ticing a lot. I thought it was from the cake but maybe it was the chlorine. Maybe both. Re the Nature's Vitality Calm, is that the powder or is it a liquid? We have the orange and my DS doesn't like it. What flavor are you using? I just chopped up a magnesium/cal/D pill for him into little pieces and he took that but it would be a lot easier if I had either a small pill or a liquid that he liked. Thanks again for yoru help! Ngold24

[evemac]

We use a Mg powder; the favor is a raspberry lemon, and we purchased it at Whole Foods. It doesn't dissolve very well, but he's gotten used to taking it, so that's a twice a dayer. We have just seen a resurgence in motor (not so much vocal) tics in the last day, so we're going to pull back on the other supplements and just do the Mg twice a day.

 

I will get the spreadsheet to you! Just have to figure out how to do that....

Eve

[StillHopeful]

Hi Eve -

 

If you can't send or reproduce the chart, I understand. Could you let me know how to lay it out? I can do it on excel. For example, list these 15 know triggers on the left and then put the day on the top of the sheet,etc? Just let me know the triggers you used.

DS was much improved yesterday. Had a great day in my mom's pool. Today, very agitated, inapproriate gestures, words,ocd, tics ..etc. Wondering if it was the chlorine? I would like to start tracking his behaviors. Do you see a response to triggers right away or next day? Thank you so much for your help! Ngold24