Robin O
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Posts posted by Robin O
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Daniel and Gine, Thanks for the reply. I will go back and read the post you mentioned Gina. I know I need to stop the Bonnie G supplements ( to much folic acid etc) but will cut back slowly and wait and see what the DAN Dr. suggest.
Thanks again. Robin..
P.S. Do you use any sort of multi vit al all. I assume its impossible to find one without the folic acid. Robin
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Gina , I have read in several of your posts about folic acid increasing your sons tics. How did you find this out ? Was it a test. I am concerned about the folic acid and my sons OCD. I never thought about it bothering his tics.
We are seeing a DAN Dr. in a few weeks and I am trying to gather information for certain tests I want. Thanks for any advice you and others can give me.
Robin
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Andy, Thanks for the response, I will check out the site you mentioned. Robin
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Andy, I have a 2 year old that I worry about developing TS, ADHD, OCD like his other brother has.
Did you consult with a DAN Dr. about preventive things to try or just know what to do from experience with your older son.
My 10 year old will be seeing a DAN Dr. in August. I am going to ask about my 2 year old as far as allergy testing etc. Robin.
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Giselle,Kim
My sons Dr. told me That PANDAS is not very common and he has only treated one person in the last 10 years with true PANDAS. I just think he does not believe in it and therefore wanted me to feel like psycho Mom for suggesting the tests.
Will a DAN Dr. order the tests for strep titers? I have wondered if my son is a carrier because my 2 year got strep last fall/winter 4 times and he stays home with me.
I suggested this to our Ped Dr. and he said strep carriers are not very common!!
Its for frustrating. The DAN Dr. we are seeing has worked with TS kids before so I am encouraged. His office is a 7 hour drive from my home!! But I think its worth it. His nurse said he could do phone consults but he would want to see him every 3-4 months for follow ups etc.
I am so tired of guessing what works and what does not espiecally with food sensitivities and vitamins.
Bonnie's vitamins seem to help keep things mild but we have never seen a day without tics and we might not regardless of what we try. That is O.K. I just want my son to have a happy childhood and not look back and think it consisted of vitamins, Doctor visits etc.
The onset of the severe head shaking tic finally made me realize I cant do this on my own anymore.
I do have good news about the head shaking. It has seemed to carm down the last 3 days. He still does it but not as often and not as severe. It so hard when new tics start but they usually decrease or stop ( and then a new one starts)
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Chemar, Thanks for the info. I talked with my sons Dr. and he does not feel like PANDAS is possible since my sons TS symptons have been consistent since the age of 7. He did not have a sudden onset of his TS or OCD.
I have been reading alot about alternative treatment for OCD and have read that folic acid can make OCD Symptons worse.
My sons takes Bonnie G's vitamins which contain 400mcg per 10 caps. I wonder if this amout can cause problems or if it needs to be higher doses. I dont recall ever seeing a multi vitamin without Folic Acid.
I have an appointment with a DAN dr. in August. I am hoping he can help me sort out all these supplement questions. Robin
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Kim, Great information, thanks so much for posting all the information. I would love to see the notes from the other discussions. Robin
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Marie,Chemar Thanks for the advice. I do have one question. I have seen my son have an increase in tics with a cold etc.
My son has "genetic TS" so would PANDAS be a factor for him? He had a Dr. Appt. with his Ped Dr. yesterday and he looked at his throat etc but did not feel the need to do a throat culture.
My son has had Strep twice since January and both times he felt terrible and his throat was very sore. If things dont carm down soon we will go back for more test. Robin
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Daniel, Thanks for the kinds words, I have a lot of faith and I know this time will pass.
Have you ever looked at the probiotics the Kirkman Labs sells. They are very good quality and are recommended by the DAN Dr. that wrote the book "Children with Starving Brains" Check out the Kirkman website. Robin
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Kim, My son weights 83 pounds and I give him 13 of the TS plus control. 2 of the EPA/DHA per day and 2-3 extra mag/Taurate everyday. I also give 500 mg of L-Carnitine he has been on the above for almost 2 years. The only change has been an increase in the amount of TS plus as he has gained weight. I have given higher doses of the the fish oil and Mag when he had waxing times and it seemed to help. (He does not take the recommended amount of the TS product but 22+ pills a day is all he can take)
I have ordered some "organic all natural" pool products we just put them in a few days ago. Before that we were only useing bromine.
I have also been wondering about the bromine/chlorine and how long it could effect his system. My sons head shaking last night and today is constant. He had a headache last night from the shaking. As soon as his feet hit the floor in the morning the shaking starts
As soon as my 2 year old takes his nap I am going to start making phone calls to DAN Dr's I will let you all know how it goes. Robin
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Jeff, We dont allow him to eat/drink stuff with artificial flavor food color etc. We tried the Feingold Diet for 6 months a saw a big improvement with his hyperness but no help with his attention problems, tics and OCD.
It did help us find a connection to a corn and milk sensitivity.
Now thinking about it we have allowed him to have a few more "treats then usual but in the past during school breaks when we allowed this we never show such an increase in symptons. Maybe his system is just overloaded and this time its really showing up more.
I need to be more careful this week in what I give him and see if it helps. I try to stay away from Corn syrup. That is a tough one--its in so much stuff.
Thanks for the tip. Robin
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Caz,Spring My son is not sick at all. He is very healthy. He says its from all the vitamins I give him!
He is 10 years old and I know this can be a period where TS tics can increase but I was hoping that with the supplements and diet control we could keep things mild.
I dont think its his age though because everything changed very suddenly.
It all started 3 days after school was out. Its crazy. Usually he does so good during the summer when he does not have the stress of school, homework etc.
I Thought maybe it was the swimming pool but I kept him out for 5 days and there is not any difference at all.
The Lexapro is an SSRI and I believe he is taking the highest dose he can (10 mg)
My heart tells me that this may be the problem. His OCD always bothers him more then his increase in tics.
What do you do? The OCD was horrible without meds and its getting out of control with meds!
Please pray that my search today for a DR. to help with all this leads us to a great person who can help my son get some relief. Robin
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A question to all of you who have had experience with DAN Dr's. I am going to make phone calls next week to 4 DAN Dr's in my state. I am wanting to get a number of test done on my son. The food sensitivity test,yeast and amino acids are the ones that come to mind.
I am wondering if they may be able to help with my sons OCD/anxiety symptons as well as his tics and ADHD.
As I have posted in the past weeks my sons has had a sudden increase in tics but his OCD has also been bothering him. In the past the OCD was always a scary thought or picture he saw which he could not get out of his mind and it would then cause anxiety. The current problem is just constant worry about saying the wrong thing to someone. For example he told me yesterday he wanted to ask one of my friends if she was chubby when she was a little girl. He worried about this all day and could not get it out of his mind. He had to keep telling me about it and I had to assure him it was O.K. but by the 20th time I was about to scream.
I am also wondering If the Lexapro he is taking for the OCD is making the tics and OCD worse. I really want to get him off the Lexapro but his OCD was terrible and I dont want a major setback before school starts. Its always something.
I need to find a Dr. that can help me with all of the above issues.
He is still on Bonnie G's vitamins/ Mag Taurate/EPA/DHA and L-Carnitine.
Its just so discouraging. He was doing so good, his tics were very mild and the OCD was under control and then it all fell apart. I know without the vitamins etc things would probably be alot worse. Something else such as food, yeast etc must be upsetting his system. Robin
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Karen, I buy a brand my local health food store has. Its their own brand. Sorry I cant help with that. Most Health food stores carry a couple different brands and strengths of L-Carnitine.
Good luck and let me know how it works.
We leave for vacation tomorrow. I am so looking forward to not cooking for 4 days!! I hop all the excitement does not start any new tics for my son.
Oh well if it does we will get through it. He is so excited and I know keeping him busy the next few days will help him cheer up a bit. Robin
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Daniel, Thanks for the prayers. My son is still ticcing alot. The head shaking has carmed down a little bit but now he is bending his head forward followed by a head shake.
He says he just gets used to it. I dont know how our kids do it. My son will tell me to do his tics just so I know how they feel. I dont know how he does the tics all day. It would wear me out. I was watching sleeping early today and he is so beautiful and so STILL.... I just watched him and prayed that God would help me to help him. I used to pray for him to be healed but I had to let it go and just accepts Gods will for my son. I still find it hard to accept sometimes but I know God is with us. Robin
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Chemar, You are very welcome. I saw where it had been deleted.
Thanks again for all you do for everyone. Robin
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Karen, I buy capsules that are 500mg each. I have seen 250mg capsules also.
I give one 500mg in the morning before he eats breakfast and one before he eats lunch. He has not had any adverse side effects only a little more energy then he needs. Thats why I give it early.
It has always helped us with the eye tics. My son has not had the rolling just the blinking and side to side thing. It usually decreases the tics in 2-3 days. I have read where some parents keep their kids on a maintenance dose of 500mg per day if they tend to keep the eye tics.
(My son is 10 and weights 83 pounds) Let me know how it goes if you decide to try it. Be sure and buy a good quality brand. Robin
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Lulegirl, Did your son take the Lexapor for OCD. My son has OCD along with high anxiety. We did wean him off the Lexapro last year and everything seemed great for 4 months then the anxiety/OCD came back very strong. I tried alterntative methods but nothing seemed to help.
Is your son using something else or was he able to come off the Lexapro and not need anything additional to help him out?
Marie, Thanks so much for the kind words. My inlaws were also insulted when I suggested that maybe the TS came from my husbands side of the family. My sister-in-law and Brother-in-law both have mild tics but dont talk about it. The family just pretends nothing is going on and infact often tell me they do not believe my son has TS. Its crazy but I guess thats how some people deal with it.
I want my son to be open about his TS/tics and be able to talk with me and his Dad about his feelings about this whole thing. We are very open about his TS,OCD and anxiety issues. I always remind him that God has a Good plan for his life and is always with him and will walk with him no matter what he has to face!
For anyone interested I have had my son on 1000mg of the L-Carnitine for 8 days now. It has always helped with eye tics such as blinking and rolling but it does not seem to helping at all with the head shaking. I am going to decrease the amount down to 500mg and then wean him 0ff completely. He takes 20 some pills a day and I dont want to give him more supplements if theyare not helping. If the eye blinking returns I will give it to him again. Robin
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Chemar, I did give my son a bath last night with epson salts. I will continue this for a couple of days.
The water we used was well water and not from a city system.
Anything in this that could cause the ticcing.
I am going to empty the pool and use the natural cleaners once they arrive.
Even my son noticed the increase last night after swimming.
Thanks for everything. Robin
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Kim, Thanks for the information. I think i will order the book.
Chemar. When your son had a reaction was there anything you could give hime to help reduce tics or did you just have to wait it out?
I ordered some 'Natural" pool products today. They are enzymes etc. I hope they work. I Will let you all know. Robin
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Nick231 Thanks for your reply. I have learned to try very hard and not react when my sons tics go crazy. I see him look to me for reassurance that everything is going to be O.K. and I have to be very strong for him.
Its so hard sometimes. My husband has a movement disorder also. He was never diagnoised with TS but after my son started ticcing he believes he may also have TS.
His movements dont wax and wane he always has the same head movements and an extreme startle reaction to very ordinary things.
Its strange,his tics/movements never bother me but when my son starts ticcing alot my heart breaks. I hope you have a break from the tics soon. Robin
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I have read about and also seen an increase in tics with my son when he swims in chlorine but has anyone seen an increase with bromine.
We just recently set up a very large pool and have been useing bromine to treat the water. My son has been ticcing like crazy.
Just wondering what others have observed with their children.
We are going on vacation next week and I know he willl want to swin in the pools etc. I guess I just have to let him go..... Robin
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KJS, The Feingold did not help my sons tics decrease but It did help with his ADD. What we did find out with the Feingold was that milk and corn did increase his tics. Also Peanut Butter seemed to bother him.
Lemonade seemed to also incrase his tics. ( the citric acid seems to cause an increase for a day or 2) We found this out by elimaniting foods. We have always stayed away from the food colors, artificial flavors etc.
You may want to try taking away milk,cheese,etc for a week and then try corn etc.
This helped us find the food triggers. Robin
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Daniel, He does have alot of allergies to pollens, tress, grass etc. We have not had any formal allergy testing for food but I have seen him react to milk, corn, and several fruits. I am going to get the food testing done this summer. Robin
New. Questions
in Tourette Syndrome and Tics
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luvmulilrainman, Let me know how you think the ambrotose works for your son.
My neighbor would like us to try it for my son with TS, ADD and OCD. I am not sure about it. I have read and head of a lot of very successful stories etc.
We have had a rough summer with a lot of new tics and his OCD getting really bad.
We did see a DAN Dr. Last week and are waiting on the results of his test. I dont want to try anything new until we get the test results back.
Robin