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Hi! I am brand new to the forum as of yesterday. My son who is three years old was just diagnosed with Tourettes and I am desparate for help. He has had tics that I know of since seven months old. He started with arm extensions at this point and tensing his body in a bearing down kind of motion. Even at the young age, he would do it many times throughout the day, and then none. As he got older he started the sniffing, then facial grimacing, jumping up and down, elongated vowel sounds, repeating phrases over and over again getting stuck...etc. These happen all at once sometimes.

 

He was five weeks early, and in the NICU for three days on room air an antibiotics. He had terrible acid reflux until we finally put him on Prilosec. His dad has a few mild tics that I have just found out about. They are so mild that he has hid them from me for seven years. ON my side we have bipolar, maybe undiagnosed OCD, ADHD, lot of drug additions. My son is has trouble with sensory integration which we work with an OT on. He has a need to touch, and this can make others think he is aggressive which he is sometimes. On top of that we knew he had dust mite allergies for some time, and treat him for asthma, but we found out he has a corn allergy by a scratch test. We have eliminated all corn from his diet along with Milk and Wheat (because he had abnormal cravings for these foods and were desparate to try something). He finally has had normal stools (the first in his life) after this dietary change. He is definitely sensitive to food and his tics are worsened by foods (especially chocolate). When he gets corn, he is literally drunk, hitting, won't transition...etc.

 

I have also put him on a vitamin (hypoallergenic Super Nu Thera from Kirkman Lab) that is a basic multivitamin with an very increased B6 and Mg. It hasn't really helped the tics, but he is calmer and for the first time he will actually play by himself. He has been on these vitamins for two months, and they definitely make him more content. That is really all I can say for them now.

I didn't know about Bonnie's until now. I think I should try to fish oils too. Because he is three, he can't swallow the fish capsules...does anyone know a hypoallergenic liquid form I could add to drinks. I can't help but think because we do see a difference this could have something to do with vitamins. He tics everyday, but some days worse then others.

 

I ordered the Pyroluria kit to try. Should I take him off these vitamins for the test? Bonnie doesn't endorse these vitamins because she thinks the B6 is too high. I think he gets about 125 mg a day of B6. He has always been a big kid despite his prematurity (90%).

 

I greatly appreciate you listening. Anything you can suggest would be greatly appreciated. We live in Myrtle Beach, SC and there are NO resources here that I know of, but we are moving back to Chapel Hill, NC in January. If you know of anyone to test for vitamin defiencies, I would be so happy! I feel like we need to do this! Thanks.

 

Natalie

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Hi Natalie,

 

www.spectracell.com does a great vitamin/antioxidant test for $285 that does not require a doctor's signature. You may need a signature for insurance coverage--not sure. You don't have to wait to move and find a doctor to do this. They give fairly conservative supplement recommendations for deficiencies.

 

Yes, he needs to be off vitamins for 3 days before the pyroluria test. Be sure to cover the speciman with foil and freeze it right away.

 

 

Claire

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Also, do you use a HEPA filter and sheet protectors for the dustmite allergies?

 

I think a site is www.nationalallergy.com

 

I forgot to mention that my husband, son and I all did the spectracell test and all of us had several deficiencies. We are ALL doing better on the customized supplement program.

 

Nordic Naturals has a molecularly distilled fish oil (meaning no impurities...) in both liquid (orange flavor--really okay taste, good for smoothies), and of course capsules.

 

Claire

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Claire,

 

I tried to look at the Spectracell site, but it's under construction. You said you don't need a doctor's signature, but it's a blood test, right? So I'd have to get a doctor to agree to draw blood? I'm sure our regular doc wouldn't do it, so I thought of asking Pfeiffer if they'd add it to the list next time we go back. Did your DAN doctor do it?

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Nancy,

 

Here is the phone number for Spectracell: 800-227-5227

 

You don't need a doctor to draw blood, just a lab that is willing to ship out of state to Spectracell. They will do it based on the Spectracell form--my doctor never even signed ours. I supposed you could put your doctor's name on the form if the lab asks.

 

If you call Spectracell, they will give you the number of how to find a lab that will draw blood and mail to them in your town. The lab cost us $50 for the draw.

 

Really, no doctor is needed, but I think it does affect insurance coverage.

 

Pfeiffer uses a different test. From reading what Pfeiffer does, the Spectracell one covers A LOT more vitamins. I will be interested in comparing the two when I get the Pfeiffer test back.

 

Claire

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I also started using the Kirkmal Labs vitamins. It's the childrens chewable that I am using for my daughter. Our DAN doctor thought they were fine. They also have a small amount of CoQ10 which was another supplement I was supposed to start giving her. They taste good and she likes to take them. I've looked numerous times at Bonnies vitamins but the large doses of capsules seem very challenging with a young child. I do believe I have seen some more improvement since switching to these vitamins.

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Is it normal to diagnose that early? I was talking to someone from the Tourettes Foundation over the summer and they told me not to worry about it till 5 or 6 yrs old and a dr wouldnt diagnose until then.

 

I was afraid my 1 year old son would get it so I called them.

 

Just curious

 

Scott

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I know it's early to diagnose, but we were desparate to figure out what these movements were and kept taking him in. In fact, the ped. neurologist we saw at Duke Hospital since he was seven months (trying to figure out some strange mouth movements and arm extension movements- we noticed tics very early on) said he would just basically keep an eye on him until he starts school. It wasn't until recently we got close to the diagnosis...it is still not coded as Tourettes, but as some coordination disorder. No one is quick to diagnose, but there are sure now this is what we are up against. My husband also has tics but so mild that he has just learned that his behaviors are tics. I guess most people don't start with the tics until later, but we certainly did. I am wondering if this makes are case more severe. ZI also have a one year old daughter.

 

We have all benefited from knowing early on already because we are doing OT, starting various alternative treatments...and NOT punishing him for behaviors we now know he can't control.

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Hi ntbowen,

 

I'm also new to this site as of November 2nd. Our son Karl (who is now 4 1/2) was diagnosed with multiple motor tics in April. I sympathize with what your family is going through. It's been very difficult for us too. We live in NJ and have an appointment with a Dr. Majid Ali tomorrow morning to begin testing for allergies and nutritional deficiencies. It took me awhile to find a doctor in my state. We were so desperate for help that we would have flown anywhere. I'll try to write back tomorrow and let you know how things went.

 

You're not alone.

 

Dara

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