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Ama

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Hi,

 

My son is almost 6 and is attending kindergarten. For the past 2 months he's been putting his fingers in his month constantly, touching his teeth, scratching his tongue and sometimes reach sofar inside that actually make him gag and throw up once. His afterschool teacher is concerned, his dad's threaten to put chili on his fingers so he can stop and we had a big argument on that. He was dx tics disorder when he was 4, since then I took him to an integrated doctor few times and had him tested for vitamin deficiency. He was low in B12 and zinc. I've put him in multi-vitamins with high B-complex and zinc, calcium/magnesium, extra vit-C. He was doing better for a while with mild tics. I have stopped taken him to the integrated doctor due to financial issue since the cost isn't cover under my insurance. I went thru divorce and this is pretty difficult for me as is. I don't know what else to do. Please help!

 

Ama

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Hello Ama,

 

Could you tells us what the integrative doctor recommended? Was it just vitamin deficiencies that they tested for? How did you find he was deficient in B12 and zinc? Also, how long ago did you see that doc?

 

Thanks and just keep reading,

Faith

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Hi Ama

 

many kids with tic disorders/TS also have OCD (obsessive compulsive disorder) which can sometimes "blend" with tics to produce this kind of behaviour.

 

my own son went thru a phase of obsessively touching his uvula (little tongue) and gagging and he HATED it but couldnt stop.....it was a tic that became OCD in nature

 

your husband most certainly needs to understand that this is NOT something your son can control, and I most certainly hope he isnt serious about causing his own child severe pain by putting chili on his fingers to stop this <_<

 

Inositol is an excellent supplement that can help with OCD type tics and is generally safe even for young children. As he is on a B complex he should be getting Vit B6 which helps the Inositol to work best (Inositol is also a B vitamin....you can get it at most health stores)

 

Also, as this seems to have happened rather suddenly, it is very possible that your son may have a strep or viral/bacterial infection that has triggered this

 

I would also highly recommend that you eliminate all artificial foods from his diet...ie things like artificial coloring, artificial sweeteners like nutrasweet(aspartame) and Splenda(sucralose) and all MSG etc

These are known to trigger tics and OCD

 

hope that helps a bit and here is also a (((hug))) huggiebears-mini.gif for you

 

Cheri

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Hello Ama,

 

Could you tells us what the integrative doctor recommended? Was it just vitamin deficiencies that they tested for? How did you find he was deficient in B12 and zinc? Also, how long ago did you see that doc?

 

Thanks and just keep reading,

Faith

 

 

Hi Faith,

 

We have only went to this doctor for 2 or 3 times, he suggested first taking the blood test on vitamin deficiencies. The test came out showing he was deficient in B12, zinc and also folic acid. We stop going after seeing some result with the supplements.

 

Ama

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Hi Ama

 

many kids with tic disorders/TS also have OCD (obsessive compulsive disorder) which can sometimes "blend" with tics to produce this kind of behaviour.

 

my own son went thru a phase of obsessively touching his uvula (little tongue) and gagging and he HATED it but couldnt stop.....it was a tic that became OCD in nature

 

your husband most certainly needs to understand that this is NOT something your son can control, and I most certainly hope he isnt serious about causing his own child severe pain by putting chili on his fingers to stop this <_<

 

Inositol is an excellent supplement that can help with OCD type tics and is generally safe even for young children. As he is on a B complex he should be getting Vit B6 which helps the Inositol to work best (Inositol is also a B vitamin....you can get it at most health stores)

 

Also, as this seems to have happened rather suddenly, it is very possible that your son may have a strep or viral/bacterial infection that has triggered this

 

I would also highly recommend that you eliminate all artificial foods from his diet...ie things like artificial coloring, artificial sweeteners like nutrasweet(aspartame) and Splenda(sucralose) and all MSG etc

These are known to trigger tics and OCD

 

hope that helps a bit and here is also a (((hug))) huggiebears-mini.gif for you

 

Cheri

 

 

Thanks so much for the info., Cheri!

 

I got a note from school couple weeks ago that there was a strep infection going around. I wonder if that has something to do with it. My son didn't get fever or sore throat though...how can you tell? Should I get him tested?

 

I've tried to get him off foods with all artificial stuffs, little hard time with MSG since we do go out to eat alot.

 

I've just purchased some inositol and B6 online. Since my son can't swallow pills, I got him the powder form of inositol(1/4 tsp 600mg) and B6 tablet that dissolves (17mg) ...that seems alot, how much should I give him? he will be 6 in a month.

 

Ama

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Ama

he is the right age for possible PANDAS induced OCD/tics

 

this is caused by strep infection that doesnt only show as a strep throat...often the throat test comes back negative but when they run a strep antibody blood titre it is sky high

 

re the Inositol

I believe 250 mg per day is considered max dose for a child under 12 who needs it for neuro issues

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Ama,

 

Does your ex-husband have the kids at times sat aside for him? And is he willing to stick to diet change and giving vit. I think it is so important you both are on the same page with this. Just a thought as I'm sure this would be my concern if I was a single parent. Good luck, their are so meny good people here to help you.

 

C.P.

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Ama

he is the right age for possible PANDAS induced OCD/tics

 

this is caused by strep infection that doesnt only show as a strep throat...often the throat test comes back negative but when they run a strep antibody blood titre it is sky high

 

re the Inositol

I believe 250 mg per day is considered max dose for a child under 12 who needs it for neuro issues

 

Cheri,

 

Thanks. I would probably have hard time convincing my son's pedi to do a blood test for strep as he doesn't have other symtoms, with my HMO coverage doesn't help much. I will definitely try. In the mean time, do you know of any natural remedies for strep infection?

 

Ama

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Ama,

 

Does your ex-husband have the kids at times sat aside for him? And is he willing to stick to diet change and giving vit. I think it is so important you both are on the same page with this. Just a thought as I'm sure this would be my concern if I was a single parent. Good luck, their are so meny good people here to help you.

 

C.P.

 

Currently we still stay in the same house, I'm taking care of my son's diet and vit 100%. Next month we will move to a new place, and it's agreed that he takes the kid every other weekend. So far he's been following along because we do see some improvement with the vitamin supplements and diet change. However lately with all this happening, he thinks my method is not working and he wants to try something more drastic like putting chili on his fingers, he thinks this is a habit of some sort.

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Ama,

 

This could be a little bit of stress because of the upcoming move. I can tell when my son is stressed. He exploded Oct. 2005 and I do remember just before the explosion my mother took a trip to Rome and he got so scared for her, then while she was there she found out she hada tick bite that turned to Lyme. The stress of worrying and praying for her I could tell when he talked about if he would Tic more.

Glad to hear you won't have to worry about the foods and vit.

 

C.P.

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hi, my name is alyssa and im 18 years old. I was diagnosed with PANDAS when I was ten due to a strep infection that was never caught. I've been wanting to write for a while on this Forum to try and help other people since now im completely well. I live a competely normal great life at my university. However, PANDAS is something difficult for me to talk about because it was a very depressing and hard period in my life. I went through a lot of serious treatments at various hospitals in New York such as IVIG, and Puls Coritcal Steroids. Right now, I take Flax Seed Oil, Vitamen E, Vitamen, a Multi Vitamen, and other suplements as well as Zithromax 250 mlg three times weekly. My tics are very well controlled although it has taken alot of time to reach this point. Im open to helping anyone who wants to talk to me. From what i've seen no one writting on this forum actually has PANDAS, and I really think I might be able to help some of you because I've lived through what all of you are going through now.

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Alyssa,

 

Thank you for your post! My 6 1/2 year old son has PANDAS from a strep infection 2 1/2 years ago. He has not been on antibiotics since last June, but he is on many of the same supplements as you.

 

I have a few questions...

 

I notice that his colour is usually pale. It can fluctuate throughout the day, but he's not what he used to be. Is that typical of PANDAS kids??

 

I thought that he would outgrow PANDAS, but if you're still battling it at 18, does that mean that it never goes away??

 

Did your doctor remove your tonsils or adenoids?

 

How long will you be on antibiotics for??

 

I have lots more to ask, but I'll hold off for now! :)

 

Thanks for taking the time to help others!

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hi, my name is alyssa and im 18 years old. I was diagnosed with PANDAS when I was ten due to a strep infection that was never caught. I've been wanting to write for a while on this Forum to try and help other people since now im completely well. I live a competely normal great life at my university. However, PANDAS is something difficult for me to talk about because it was a very depressing and hard period in my life. I went through a lot of serious treatments at various hospitals in New York such as IVIG, and Puls Coritcal Steroids. Right now, I take Flax Seed Oil, Vitamen E, Vitamen, a Multi Vitamen, and other suplements as well as Zithromax 250 mlg three times weekly. My tics are very well controlled although it has taken alot of time to reach this point. Im open to helping anyone who wants to talk to me. From what i've seen no one writting on this forum actually has PANDAS, and I really think I might be able to help some of you because I've lived through what all of you are going through now.

 

 

Alyssa,

 

I think it is very brave and thoughtful to offer to help. i have a daughter who is 11 and has tics she has never been diagnosed with panda or tourettes or anything at all. i think the doctors think i am crazy. she can supress her tics at all the appointments. did you have both vocal and motor tics? also, my daughter is starting middle school next year and i am concerned that this will be a really hard time for her. we do not discuss her tics. she is quite emotional and i think if we talked about them at this point it would make her so self concious and i just don't feel it would be right. do you have any suggestions as how might be best to deal with her emotionally and also any advice for how starting middle school might go?

 

thanks for being here and being willing to give input.

 

vicki~

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Hi vicki linn

 

I had both vocal and motor tics..and I still have them actually, however its only during periods of high stress and right before my period because of all the hormones. Flax Seed Oil is really good for controlling hormones and especially the hormones that cause acne during adolence. For me acne was a huge source of stress that made my tics worse. Just a little bit of extra info..

 

.. Surpringly, I could control my tics when I went to the doctors as I got older too. It was usually bcause I was at the point where I wasn' t extremely sick, i could function and live a pretty normal life. I wanted to really believe that i was 100% well when I wasn't. I didnt want to admitt that anything was wrong. That was my reason, but everyone is differnt. Also controlling tics in public such as school is alot easier than controlling them at home because at school your busy and usually preoccupied with work. You dont have that much time to focus on tics and I still find that to be true.

 

Disucssing tics with me is really hard to do especially with my parents because there's alot of blame and anger thats still left over.. I remember me and my mom trying to discuss them and it only caused huge arguements because talking about it for me made my tics worse even though she was only trying to help. Most of the time, I told her to get out and leave, adn teh conversation ended in tears..Let her come to you, and really try to listen and be calm. If everyone becomes all uptight and worried, it will only make her tics worse.

 

When I was sick it was mainly 4th and 5th grade. By sixth grade, I was able to go back to school but it was still hard especially math. I got a doctors note and the school allowed me to have extra time on standardized tests and regular tests. This was really helpfull, so I would highly reccomend finding a way to do this in your chids school system.. If your child needs to have a tic, I would first reccomened telling the teacher the problem so she'll be aware of whats going on. Me, I was allowed to simply leave the room whenever I felt like I was going to have a tic, and I could come back when i was ready to study.

 

I was really an emotional wreck with my mom during middle school. I wouldn't bring up the subject of tics unless her tics become very serious, because it's difficult to speak about. It hurts, ands makes you realize that your the one thing that everyone dreads to be in middle school.. and that's different.

 

However, from what you told me, Im not sure she has PANDAS. With PANDAS there has to be direct correlation with a Strep infection and tics. The next time she does get sick look and see if her tics get worse, and have her titers checked in a blood test. It would also be a good idea to see if she's a strep carrier. I can give you the name of the doctor that I went to see, but Im from the tri-state area so I dont know if that's a possibilty for you

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Alyssa,

 

Thank you for your post! My 6 1/2 year old son has PANDAS from a strep infection 2 1/2 years ago. He has not been on antibiotics since last June, but he is on many of the same supplements as you.

 

I have a few questions...

 

I notice that his colour is usually pale. It can fluctuate throughout the day, but he's not what he used to be. Is that typical of PANDAS kids??

 

I thought that he would outgrow PANDAS, but if you're still battling it at 18, does that mean that it never goes away??

 

Did your doctor remove your tonsils or adenoids?

 

How long will you be on antibiotics for??

 

I have lots more to ask, but I'll hold off for now! :)

 

Thanks for taking the time to help others!

 

Hi sunshine!

 

The color of my skin is actually not naturally pale, the doctors thought that I might possibly outgrow PANDAS as well, however, I still have tics during periods of stress, and when Im sick because of all the stress on the body. The doctors were thinking about taking out my Tonsils, but when I had strep but they didn.t The strep I had was mostly in my ear because I had constant ear infections. The doctos did give me ear tubes..

I started off taking pennicilian in 5th grade and then around 7th grade, my tics started to get worse so they switched me to amoxicillian, and now Im on zithromax. From what I've read and heard at the doctors office, eventually PANDAS should be able to be cured with an antibiotic. The problem is that theres a form of strep still in the body which is resistant to antibiotics..that is why the anitbodies are formed and attack the brain, its because theres still a form of Strep left. So im hoping one day it will be cured. I read about one Anti-biotic in particular which should hit the market in 2012.. It's called plectasin, and it's very stong against strep so Im hoping that it will be the cure! :)

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