Confused

[kc35]

My 6 year old DD had an eye roll tic last fall. She was evaluated by EEG, MRI and we were told it was a tic. It went away and most of last year she did not have any symptoms that really concerned us. Then in the last month she started with a simple eye twitch, that has escalated into finger/arm movements (ie) sticking arms out and bending them, finger clenching), leg lifts, and most concerning a full body stretching tic which is really awkward. She doesn't have much vocal right now - just some throat clearing here and there. She has not been diagnosed with Tourettes, however I am afraid that is going to be the case. We are seeing a neuro who specializes in movement disorders in Dec. Last year the neuro we saw suggested that if things got worse, consider CBIT therapy and/or 200mg MgO or Mg gluconate and 100 mg B6. I have made an appt with a CBIT therapist for Oct since DD indicates that she has feeling to do these movements and doesn't like them.

 

I have purchased Nature Made MgO and was prescribed the B6. We have not given her any yet. We have just tried to increase Mg in diet with pumpkin and sunflower seeds, almonds, coconut juice etc. I am wondering have people really seen improvement with using Mg and or B6? On this site I have read that MgO is useless and I can't find Mg gluconate. What type of Mg and how much have people here had success with?

 

Also I have read that many have done IgG sensitivity testing and other testing and eliminated gluten and dairy. We tried eliminating dairy this week but didn't see her tics disappear, although she was sick all week. We have tried low gluten. I am confused about how to safely administer the gfcf diet. How do you ensure that they are getting enough Ca on a non- dairy diet? With going gluten free - is it better to just stick with rice based products since corn is also an allergen? Also can anyone recommend a good homeopathic/naturopathic doctor who will do IgG, mineral deficiency testing? I am willing to travel wherever I need to. I went to a traditional allergist and they were only willing to do skin prick test for environmental allergies and she was positive for dust mites. They wouldn't even consider food allergy testing. Sorry for the long message, just need some help. Thank you.

 

kc

[rissakaye]

I would give it longer than a week on dairy free before making up your mind about. My son's been dairy-free for a period of months now and the improvements build over time. Also, sure that you are getting all of the dairy. It's a hidden ingredient in so many things.

 

Honestly, I haven't worried about calcium with my son. He had refused to drink milk from an early age and I'm delighted that now he's drinking soy milk happily and getting a consistent source of calcium. Most days he gets close or at recommended levels from his soy milk and the coconut milk I use. (He has a tree nut allergy so we use soy for drinking and coconut milk for cooking).

 

I think that other people will be able to help you better with your other questions. I will say that I found the allergist to be to the least helpful person. He told me that my son was faking everything to please me. Even both of my 9 year old twins commented on rude the allergist was. Hopefully someone will have recommendations for you. I've decided to forgo pursuing a lot of dr's and work on just getting my son to eat better food. For us, that's what has helped.

 

Marissa

[my2sons]

Food was key for us, too. We went gluten, dairy, low sugar, no artificial anything 5 months ago and the change in him has been REMARKABLE! His ADHD and anxiety are non existent, his learning disabilities have improved a lot and his tics are down to 5 or less a day and he is still improving. It does take time. Can take a yeat to two years for complete healing but it is so worth it. We saw an Environmental Allergist in Charleston, SC, Dr. Alan Lieberman. You can google him. Good luck!

[msimon3]

I know you are seeking guidance on diet and supplements, but I would also recommend exploring the likelihood that the tics are a result of inflammation and infection. Several members here have similar stories to yours, and some have discovered that bacterial or viral infections were the cause and diet/supplements have a mitigating effect on the symptoms. In additional to your pursuits on diet and supplement changes, you might also benefit from looking for diagnostic or clinical signs of infection.

[kc35]

Thanks to those who responded to my post. Last year when the eye darting started she had a blood test for strep and it came out negative. Therefore she was cleared for PANDAS. Since she was sick last week (fever, malaise, slight sore throat) and I found out one of her classmates had strep throat, I took her to the dr today. They did a rapid strep test and found it to be negative. The doctor is sending it out for a a more accurate analysis. My DD seems a lot better so it doesn't seem that she has strep throat. If she had strep throat wouldn't she be getting worse? Is there some other types of infections I should get her tested for, that cause tics?

 

Her tics were a lot worse this weekend than previously. The last several days I let her cheat on the dairy and she had more gluten. I will try again with the diet but it will be tough since she loves dairy and wheat. It will take me awhile. I asked my Dr about IgG testing and he didn't even know what it was.

 

Does anyone have any information about whether Mg or B6 helped reduce tics? I know there was a study done by researchers in Spain that showed some good preliminary results but I can't find the final study. I am afraid of giving her Mg and B6 because I don't want to make her tics worse. Whenever I give her more Mg rich foods, I sometimes think she becomes more wired but I can't be sure.

 

Has anyone tried applied kinesiology as a form of allergy testing?

 

Thanks.

[kc35]

Thanks to those who responded to my post.

 

Last year when the eye darting started she had a blood test for strep and it came out negative. Therefore she was cleared for PANDAS. Since she was sick last week (fever, malaise, slight sore throat) and I found out one of her classmates had strep throat, I took her to the dr today. They did a rapid strep test and found it to be negative. The doctor is sending it out for a a more accurate analysis. My DD seems a lot better so it doesn't seem that she has strep throat. If she had strep throat wouldn't she be getting worse? Is there some other types of infections I should get her tested for, that cause tics?

 

Her tics were a lot worse this weekend than previously. The last several days I let her cheat on the dairy and she had more gluten. I will try again with the diet but it will be tough since she loves dairy and wheat. It will take me awhile. I asked my Dr about IgG testing and he didn't even know what it was.

 

Does anyone have any information about whether Mg or B6 helped reduce tics? I know there was a study done by researchers in Spain that showed some good preliminary results but I can't find the final study. I am afraid of giving her Mg and B6 because I don't want to make her tics worse. Whenever I give her more Mg rich foods, I sometimes think she becomes more wired but I can't be sure.

 

Has anyone tried applied kinesiology as a form of allergy testing?

 

Thanks.

[blakes_mom]

I can only answer the first part of your question. I would not rule out pandas just because of a negative throat culture. I would have them repeat the blood tests that would show she had a recent infection. Ask for ASO and anti dnase B. And yes there are many other infections that can cause tics. Pandasnetwork.org has some good information and lists of doctors that can treat PANDAS. My son had this eye rolling tic and several more. He is doing great now after long term antibiotics and a T & A. Let me know if I can help in any way.

[Chemar]

Hi

I have merged your 2 threads as it gets confusing for others when 2 threads by a member are related to the same issue/asking the same questions

 

If you read through our helpful threads pinned to the top of this board and also linked in my signature, you will find a lot of good info

 

For people with Tourette Syndrome, magnesium seems to be the single most important supplement. There are many forms other than mag oxide so you should be able to find another type easily.

 

If the tics are caused by something other than TS, magnesium may or may not be helpful...depends on the root cause.

B6 helps facilitate the functioning of other supps and most find it best used in the P-5-P form

 

I do agree that you should follow up further regarding the strep or some other infection connection...our PANS forum has a lot of information

 

regarding the other questions...if you use our search box entering specific keywords you can usually get a lot of info from past threads.