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Diagnosed with Tourettes


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Hello Everyone,

 

I joined the forum about a month ago and posted a few messages regarding my 7 year old's tics. Last month, I was very desperate and felt helpless. I just wanted to thank everyone who wrote back and responded to my posts. I had to take a break from the "internet" because I was driving myself crazy with worry. I just wanted to give an update on my son's progress and get advice from the wise members of this group.

 

We saw the neurologist on Tuesday and he was officially diagnosed with tourettes. It's been such a sad few months. He continues to do neck turns, throat clearing, blinking, and some grimacing. It's not as bad as it was last month. Last month, he was doing non-stop tics (no breaks, no rests). It was very sad and scary to watch.

 

So far, we continue to do homeopathy but have decreased some remedies. If you can believe it, he also got pneumonia last month and was put on antibiotics. I wonder if the antibiotics will or have made things worse. We are on our second month of a gluten and wheat free diet. Not seeing any changes, though. We're considering a cognitive behavioral therapist but the neurologist says it might not work if my son isn't motivated enough. I would love some advice on any other remedies out there. I've seen posts talking about Bonnie's supps (supplements?), Kid's Calm, and NAET. Can someone explain those remedies to me? I'm very new to this.

 

Every day is scary to me. I am worried the minute I wake up wondering what I'll see or hear next. I am worried when I pick him up after school because he's often worse at the end of a school day. I'm trying so hard not to let him see my concern but it's wearing on me. Please help.

 

Thank you!

 

P.S. Chemar, thank you for you email response. So sorry I haven't replied. I've been quite overwhelmed.

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Hi Nola

 

glad to hear you are making progress

 

the Kids Calm has been discontinued so people now use the original one NATURAL CALM

It is available at health stores and online. (The Kids Calm liquid you can still find but that is a different thing, it is a multivitamin, not magnesium)

 

epsom salts is magnesium sulfate, 2 cups in a warm tub of water with 20 min soak before bed seems to calm tics. available at Target and supermarkets/pharmacies

 

Bonnie Grimaldi is an inspiration to many of us as she initially formulated a vitamin/mineral supplement plan to help her child, and posted it online. She has subsequently come out with her own products, BonTech http://www.bonniegr.com

I have not ever used her products for my son as we put together individual supps, based on her original plan for her child and it worked so we stuck with it. Some of our members do use her products with much success tho some have reported sensitivity, thought to possibly be to the soy?

 

 

HTH

 

remember to read the pinned Helpful threads for more info.

I also have that link in my signature below here on what helped my son :)

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Hi Nola

 

glad to hear you are making progress

 

the Kids Calm has been discontinued so people now use the original one NATURAL CALM

It is available at health stores and online. (The Kids Calm liquid you can still find but that is a different thing, it is a multivitamin, not magnesium)

 

epsom salts is magnesium sulfate, 2 cups in a warm tub of water with 20 min soak before bed seems to calm tics. available at Target and supermarkets/pharmacies

 

Bonnie Grimaldi is an inspiration to many of us as she initially formulated a vitamin/mineral supplement plan to help her child, and posted it online. She has subsequently come out with her own products, BonTech http://www.bonniegr.com

I have not ever used her products for my son as we put together individual supps, based on her original plan for her child and it worked so we stuck with it. Some of our members do use her products with much success tho some have reported sensitivity, thought to possibly be to the soy?

 

 

HTH

 

remember to read the pinned Helpful threads for more info.

I also have that link in my signature below here on what helped my son :)

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We are in the begining stages of trying to find out answers as to what is going on with out son. But while we have been waiting to see the neurologist we decided to put dorian on a magnesium supplement(the Natural calm powder) and HMF probiotics.

I have to say we have seen a big change. He use to tic non stop while he was awake and now it is very mild. His loud uncontrolled sniffing has stopped altogether.

My husband wasn't convinced that the magnesium was working so I stopped giving it to him for a few days and he was out of control most of today. My husband is now convinced!

The magnesium wont hurt him if given in proper doses. You should give it a try. Also probiotics are very improtant especialy durring and after antibitoics.

 

Hello Everyone,

 

I joined the forum about a month ago and posted a few messages regarding my 7 year old's tics. Last month, I was very desperate and felt helpless. I just wanted to thank everyone who wrote back and responded to my posts. I had to take a break from the "internet" because I was driving myself crazy with worry. I just wanted to give an update on my son's progress and get advice from the wise members of this group.

 

We saw the neurologist on Tuesday and he was officially diagnosed with tourettes. It's been such a sad few months. He continues to do neck turns, throat clearing, blinking, and some grimacing. It's not as bad as it was last month. Last month, he was doing non-stop tics (no breaks, no rests). It was very sad and scary to watch.

 

So far, we continue to do homeopathy but have decreased some remedies. If you can believe it, he also got pneumonia last month and was put on antibiotics. I wonder if the antibiotics will or have made things worse. We are on our second month of a gluten and wheat free diet. Not seeing any changes, though. We're considering a cognitive behavioral therapist but the neurologist says it might not work if my son isn't motivated enough. I would love some advice on any other remedies out there. I've seen posts talking about Bonnie's supps (supplements?), Kid's Calm, and NAET. Can someone explain those remedies to me? I'm very new to this.

 

Every day is scary to me. I am worried the minute I wake up wondering what I'll see or hear next. I am worried when I pick him up after school because he's often worse at the end of a school day. I'm trying so hard not to let him see my concern but it's wearing on me. Please help.

 

Thank you!

 

P.S. Chemar, thank you for you email response. So sorry I haven't replied. I've been quite overwhelmed.

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My son had some of the same tics for about two years. Some of things I believe helped are chiropractic adjustments weekly,accupunture,calm kids,omega w/D3,probiotics and good multi-vitamin.I also believe in no dye,dairy,high frutose,msg and artificial free diet. My son head tic was so bad two and half years ago....we rushed him to the ER. He has been 100% symptom free for the last 7 months. My heart aches for you because i know what a daily struggle it is...i hope it gets better for you.

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My son had some of the same tics for about two years. Some of things I believe helped are chiropractic adjustments weekly,accupunture,calm kids,omega w/D3,probiotics and good multi-vitamin.I also believe in no dye,dairy,high frutose,msg and artificial free diet. My son head tic was so bad two and half years ago....we rushed him to the ER. He has been 100% symptom free for the last 7 months. My heart aches for you because i know what a daily struggle it is...i hope it gets better for you.

 

stacilynn,

how old is your boy now? tic free for seven months? you've said what you think helps,.do you think it was accumulative? how did it go, one day it just stopped, or got less and less? how much kids calm to you give?

 

thanks

Faith

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  • 4 weeks later...

Hi everyone,

 

Thanks for the replies. October was a bad month. November was better. It's gotten worse again this past week. My son is back to doing his tics constantly (head moving, humming, and throat clearing). I'm so worried that he's going to hyperventilate. I think I'm hyperventilating. We are on our 4th month of homeopathy. We are working with a really lovely person named Lyndel from the Houston Center of Homeopathy. Is anyone familiar with that center? I heard about it from a friend who has a son with autism. Lyndel seems wonderful and I really want to believe in her and her protocol. I'd love to hear what people think about homeopathy. I'd like to start Kid's Calm and I think someone mentioned a magnesium supplement. Is this okay to give with the homeopathic remedies? I've also been told that Niacin might help calm down his tics. Has anyone used Niacin?

 

We are also considering seeing a cognitive behavioral therapist named Dr. Lazarus. I think he's in San Ramon, CA. Anyone heard of him??

 

Thank you to "Eljomom and keeptrying" for your personal messages. Every morning I wake up anxious wondering what the day will bring. After school, I hold my breath waiting to see if the tics have gotten worse or if he's had a bad day. I don't want to give up on him but I don't know if what I'm doing is having any affect. I'm just so worried that these tics are hurting him. They aren't, are they?

 

Thanks again to everyone's responses.

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My son's behaviour sounds similar. He started turning his head, shrugging his shoulders, grimacing, rolling his eyes, and became more anxious about our whereabouts. His writing became sloppy, and he started talking in class. The teacher noticed a difference.

 

He had pneumonia, strep, and an ongoing cough. A few weeks of azithromycin made the difference. Now, I try very very hard to get him azithromycin as soon as he has a fever, to try to prevent all of it from coming out like it did. He says that whenever he has ta fever, he feels like his body wants to do those movements.

.

Try to see if you can get your hands on azithromycin...the proper dose for strep...and see if you can get it for more than the 5 day treatment. It can clear up all sorts of things that the doctors missed. My ds had enlarged adenoids when he was 3, and I really wish that the doctor had prescribed azithromycin then, rather than just letting it sit. We had the worse experience with a homeopath, who just didn't know what she was doing, and prescribed all sorts of vitamins and minerals, not just homeopathy. Beware.

 

That is our story. I am always always on edge. I wish that I could relax like other parents, but I am always worried that the same thing will happen again, so I try very hard to prevent it from happening again. Last year, was the saddest year going. I realized that my son was different, and I now realized how other families felt. I now work very hard to be very aware of his triggers, and all of his illnesses. It is an ongoing and never ending effort. It is all consuming. It is my priority in life.

 

Don't know if my post will help you. Hope that it does.

 

I believe that the pneumonia is bad news and strep is bad news. Didn't realize it before. Now, every little thing is bad news. I am more aware, and more watchful. I am also more scared.

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