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Hi everyone, so this is my second time writing about my daughter. She started having severe head jerking in September 2013, took her to the neurologist and they said she has to have vocals and motor for a year to be diagnosis. The tics were pretty bad ahead jerking then went to her shoulders then to arm flapping and when she would walk every couple of step she would kick her leg back. Also walking down the stairs every couple of steps she would lift her leg up. Everything happens on the right side only, nothing ever on the left. Because there is no family history of TS I thought maybe it was trainsient. So thing started to get better with the tics slowing down in January after she had the stomach bug, then in February and March she was also sick with the flu, when she's sick we see no tics at all. A week ago she had a ear infection and had a z pack, last day of the medicine was Tuesday the tics started Wednesday. Head jerking to the side now, always in threes and the arm flapping is also back, and I'm hearing a low squealing noise and throat clearing.

She has been gf/cf no artificial colors or preseveratives, organic, we've done everything, hepa air filters very low sugar organic cleaning products ect......... She is seeing a phscolgist cause when the tics started over night, literally, we had major family deaths and lots of anxiety. Her doctor says the tic are a form of anxiety. Well as of Wednesday I though he was right well now I'm not so sure. So we're heading into the seventh month now and I'm not sure if it could be TS or not. She was also tested for strep and lymes, all negative. And we're having allergy and food testing done in two weeks.

 

I'm sorry this is so long but can anyone help me. Does anyone know why when she's sick her tics disappear. And because she's so young are they going to be terrible when she gets older. I'm a desperate mom needing much answers.

 

Thanks for listening

Genevieve

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Hello Genevieve,

 

I understand your concerns. The few years I've been on this forum have taught me that every child's situation is unique, that there is what seems at times to be an endless process of trial and error. But I believe that the most important thing a parent can do is to take steps. You are taking steps and I believe they will ultimately have positive results.

 

Some of what you say reminds me of what we went through. Initial onset of tics (eyelash pulling, stopping while walking and squatting to pull up socks, and probably others we didn't pick up on) started around age 4. I was panic stricken. Went to a pediatric neurologist who would have subscribed meds if we had asked, and to a ped. psychologist. We did a couple of novice knee jerk dietary changes: he drank loads of apple juice so we cut that right out, added chicken and turkey to his diet - he was eating pretty much a vegetarian diet, due to household norms. The tics lasted a several months and went away. They may have recurred around a year later, to a lesser degree, then stopped again. Age 8, my son started (in March!) with a head jerk that was minor but noticeable, then increased over the summer. This was accompanied over time by arms extending, then leg stretches, a breathing tic, some ocd behaviors. Again, I was upset by all this, and fortunately found this forum around the same time I made a second ped. neurorlogist visit (terrible experience - callous, unprofessional, drug peddling dr., sorry for being so blunt).

 

We then identified an evironmental practice that was life saving. It was wonderful to have drs. who knew what we were talking about and had plans of action that were not "ignore causes and medicate." The most important thing this practice provided to us was a rotation diet based on food sensitivities that were identified through the pin-prick method. Over the course of several visits they provided other tests and recommendations, but the changes that helped us, along with the diet, were found here.

 

Of course, the consistent delivery of magnesium via Natural Calm and epsom salt baths were part of what we took up. Then, we introduced a potent, comprehensive multi, which had significant results with our son. Then, the subsequent addition of another supplement that was identified through paying attention to what different ingredients in the multi actually do once inside the body.

 

Within a year of finding this site and implementing these changes, things were much better with my son.

 

While your case seems similar in some ways to ours, it also seems to be different in one significant way: my son did not experience sudden overnight onset. It was more gradual. So there may very well be some infection-related issue with your child.

 

I see that you have had strep and lyme testing done. But those infections may require sophisticated testing procedures that an average pediatrician may not be on top of. I'm not sure if you've been on the Pandas / Pans board, but I would recommend comparing notes with the very knowledgeable parents on that board.

 

Hang in. Continue looking and things will hopefully improve.

 

Chris

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Thanks Chris for your response. So far she does take Epsom salts baths 3 times a week and takes kids clam with probiotics, flax seed oil, magnesium and a b complex since the very beginning. Not sure if any of it is actually helping. But I still continue to do it. Also one other thing I've noticed that when her tics start up she can't get enough to eat. When usually she's not a big eater at all. I'm so puzzled.

Thanks again for your response.

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I hope the doctor who told you "tics are a form of anxiety" will admit that tics and OCD can have numerous causes and not just anxiety. While anxiety could definitely be a factor for your child, too often doctors suggest that anxiety is THE factor so they can write you a prescription and send you on your way. Of course I don't know your situation all that well, but I think it is worthy to consider that immediate onset of tics is also likely caused by active infection or a post-infection immune process or some other cause.

 

In our child, we also notice a decrease in tics and OCD during illness. We haven't found an explanation for it, but since we believe the tics are a symptom of immune function we think that the wax and wane of tics over time or during events like illnesses is directly related to the state of the immune system at that point in time. While it might seem counter-intuitive to think that the tics go down, instead of up, during times of illness, at this point perhaps to most important observation to note is that the tics change during periods of illness. For some people, tics do not change during illness, nor are they caused by or related to immune function.

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If you follow the rule "what does her body have that she does not need and what does she need that she does not have". From your post you have done a lot of dietary and environmental changed, so you may need to look if she has any deficiencies. If you have not already done so, getting nutritional and mineral analysis done may be beneficial. It's a blood test and hair analysis.

 

From our perspective once my son's body got better nutritional balance based on his tests, his tics have been extremely minor and not really noticeable to anyone else around him.

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