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Help Please, help!


Emik
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Hello All,

 

My Daughter turned 9 in september 2010. Just around her birdthday, she complained on a tingeling sensation in the shoulder area that would make her shoulder twitch. We did not pay any attention to this as we thought is something minor and probably will go away.

 

Latter - mid November, she developed heavy eye blinking and arm twitch. We saw our pediatrition and she recomended that we IGNORE. She did send her to EEG though. The same day (as the EEG), my dd complained that the EEG test was very hard and her legs were hurting because she needed to keep them tight all the time. Coincidently she mentioned yesterday that she can hardly sit still in the classroom, she constantly feels a tightness in her legs and constantly feels the urge to kick her legs off the chair.

 

I do not understand! Last Sutarday, she was soooo good, hardly blinking and not frequent arm movements.

The very next day, Sunday, all came back in full speed, plus the leg kicking in the clasroom. I feel soooo helpless, and do not know where to start, what to do. As per our pediatrition, we do not need to see neurologist, not yet. She feels that this may go away, although she is not aware of the latest developments (leg kicking).

 

Is there a hope? Can this really go away? My dd clearly shows signs that something is happening with her body, totaly out of her controll. I do not think we have TS in our family.

 

I would be very interesed to lear if there are some books or examples of how we can practice Habit Reversal and/or some other techniques that may help.

 

She was under FLOVENT from Sep to Mid November, then we took her off thinking Flovent might have caused the tics. She is almost 3-4 weeks off FLOVENT and we do not see any improvement - so FLOVENT was obvioulsly not the trigger.

 

Is there any hope on this journey or is just going to get worse???

 

Thanks sooo much to all in advance!

 

Thanks & Best Wishes

Amy

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Hello Amy,

 

I'm not sure I have much to offer except to say that many children do have transient (as opposed to chronic) motor tics at some point during childhood. So let's hope that that's the case with your daughter.

 

I know also that tics can wax and wane, so if you don't notice them so much one day but do notice them the next, that would not be unexpected.

 

I've learned since being on this forum that if one notices a sudden and dramatic onset of tic behaviors, that it is a good idea to try and recall whether or not there was an illness (like a strep throat) that coincided with the onset. If so, the infection might be playing a role.

 

If you notice that the tics are continuing and bothering your daughter, and want to try some things to lessen them, you're in the right place - lots and lots of information here! Starting points seem always be diet and basic supplements. The diet issue is the tough one, and usually starts with eliminating all artificials, preservatives and other unhealthy additives, and moving on from there. The supplements usually include magnesium (e.g., Natural Calm) and a potent multivitamin.

 

Sending well wishes to you and your daughter!

 

Chris

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Hello Chris,

 

Thank you so very much for your reply.

 

With exceptions of the last couple of days (being out of town), I am now a very frequent visitor to this forum. I find it has a very helpfull info and ideas, and most importantly I see we are not alone...

 

We constantly go back in time, and remember she had fever mid Aug. It lasted a day or two. Her doctor, took a sample for a strep test, which came back negative, however I wander if a blood test would be also helpfull, to eliminate any possibility.

 

 

Today, my husband and I agreed to try a 'no diary' diet;. We feel this is something we can try ourselves for 2-3 weeks. After the holidays, we would definitelly like to see a nutritionist or other professional to guide us for a diet suitable and developed for my dd.

 

I have also ordered two Natural Calm products, the multi vitamins and the Mg/Zinc/Ca combo which says is the EU version. We should receive it by next week. I do wander, however if this is something we can start on our own or we should consult our PED. So confused and so scared at this time, I just do not want to make a wrong move and make things even worse.

 

Wishing you all a very Happy Holidays.

 

 

Thanks & Best Regards,

Amy

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Amy,

We had a very similar situation with our son almost one year ago. We finally started the Feingold diet in September and it has made a huge difference. For the past few months his tics have been almost unnoticeable, until this past week... My wife decided to let him eat almost whatever he wanted while he was home from school for Christmas break...what a big mistake. His tics are back...almost constant.

When we started the diet, it did take a few weeks to notice the results. Once you get started, the diet is very easy. Just eliminate artificial colors, preservatives..etc...

I did take him to a TS doctor in May and she said the best thing to do is ignore it...It should go away during puberty. Toughest thing in the world to do.

I hope this helps

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Amy,

 

As you mention remembering a fever in July, not long before these symptoms started creeping up, and you do not believe you have TS in the family. In case you are not already aware, I want to you to be aware of the possibility that these symptoms are sometimes a result of an autoimmune condition called PANDAS (or PITAND more generally), and also sometimes lyme disease. For example, sometimes people do have a fever or flu as they get lyme disease. Of course, a fever could be many other things as well. But, as you noticed the timing, I wanted to point out to you some possibilities for what that could mean. There are separate forums on this site for PANDAS or lyme, in case you want to pursue that more.

 

Dietary improvements can be helpful for many conditions, including TS and PANDAS and lyme. Of course, for PANDAS and lyme, those changes may help things some but would ultimately not be a cure, and so that could be something to keep in mind going forward as well.

 

Michael

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Amy,

 

As you mention remembering a fever in July, not long before these symptoms started creeping up, and you do not believe you have TS in the family. In case you are not already aware, I want to you to be aware of the possibility that these symptoms are sometimes a result of an autoimmune condition called PANDAS (or PITAND more generally), and also sometimes lyme disease. For example, sometimes people do have a fever or flu as they get lyme disease. Of course, a fever could be many other things as well. But, as you noticed the timing, I wanted to point out to you some possibilities for what that could mean. There are separate forums on this site for PANDAS or lyme, in case you want to pursue that more.

 

Dietary improvements can be helpful for many conditions, including TS and PANDAS and lyme. Of course, for PANDAS and lyme, those changes may help things some but would ultimately not be a cure, and so that could be something to keep in mind going forward as well.

 

Michael

 

 

Hi there

I have read quite a bit on the PANDAS site. Am I right in thinking that with PANDAS you would also get OCD like symtons and not just tics?

 

So much to learn!

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Amy,

 

As you mention remembering a fever in July, not long before these symptoms started creeping up, and you do not believe you have TS in the family. In case you are not already aware, I want to you to be aware of the possibility that these symptoms are sometimes a result of an autoimmune condition called PANDAS (or PITAND more generally), and also sometimes lyme disease. For example, sometimes people do have a fever or flu as they get lyme disease. Of course, a fever could be many other things as well. But, as you noticed the timing, I wanted to point out to you some possibilities for what that could mean. There are separate forums on this site for PANDAS or lyme, in case you want to pursue that more.

 

Dietary improvements can be helpful for many conditions, including TS and PANDAS and lyme. Of course, for PANDAS and lyme, those changes may help things some but would ultimately not be a cure, and so that could be something to keep in mind going forward as well.

 

Michael

 

 

Hi there

I have read quite a bit on the PANDAS site. Am I right in thinking that with PANDAS you would also get OCD like symtons and not just tics?

 

So much to learn!

 

No, our son only showed tics, we did try diet and things but antibiotics was what clearly showed us that it was PANDAS. His flare up was huge and basically the strep was undiagnosed and turned into rheumatic fever untill we finally got the correct medication. Took doctors too long to think to take blood work. Kathy

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Amy,

We had a very similar situation with our son almost one year ago. We finally started the Feingold diet in September and it has made a huge difference. For the past few months his tics have been almost unnoticeable, until this past week... My wife decided to let him eat almost whatever he wanted while he was home from school for Christmas break...what a big mistake. His tics are back...almost constant.

When we started the diet, it did take a few weeks to notice the results. Once you get started, the diet is very easy. Just eliminate artificial colors, preservatives..etc...

I did take him to a TS doctor in May and she said the best thing to do is ignore it...It should go away during puberty. Toughest thing in the world to do.

I hope this helps

 

Thanks so much for your reply. We started the 'no diary' diet and no artificial colour/sugar a couple of days ago. Both, my husband and I noticed decrease in the facial/eye and arms tics, we were so happy and I could not believe my eyes. However, today she complained that ‘something’ makes a constant discomfort below her shoulders and she constantly feel the urge to straighten her back. So, now I notice her other movements and I wonder if this is another tic. We will definitely continue with the diet and see how the situation develops. I will post an update.

 

Thanks & Best Regrads,

Amy

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Amy,

 

As you mention remembering a fever in July, not long before these symptoms started creeping up, and you do not believe you have TS in the family. In case you are not already aware, I want to you to be aware of the possibility that these symptoms are sometimes a result of an autoimmune condition called PANDAS (or PITAND more generally), and also sometimes lyme disease. For example, sometimes people do have a fever or flu as they get lyme disease. Of course, a fever could be many other things as well. But, as you noticed the timing, I wanted to point out to you some possibilities for what that could mean. There are separate forums on this site for PANDAS or lyme, in case you want to pursue that more.

 

Dietary improvements can be helpful for many conditions, including TS and PANDAS and lyme. Of course, for PANDAS and lyme, those changes may help things some but would ultimately not be a cure, and so that could be something to keep in mind going forward as well.

 

Michael

 

Michael,

Thank you so much for your reply and for the info. My daughter had fever in mid Aug, and it seems that all went downhill since then, or is just a coincidence. Our pediatrician took a strep test but just from her throat - it came back negative. We asked for a blood test, haven't done it yet though. At the time our dr. thought is not necessary.

 

We will ask for these tests as soon as the dr's. office is re-opened on Monday.

 

 

Thanks so much for the info.

Amy

Edited by Emik
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Just please be aware, in pursuing any lyme testing, that the standard tests are not very effective. Since most doctors don't know enough about lyme disease to know this, anyone pursuing lyme testing is well advised to not just rely on their regular doctor (if not seriously versed on lyme) to select the tests to run and interpret the results.

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Just please be aware, in pursuing any lyme testing, that the standard tests are not very effective. Since most doctors don't know enough about lyme disease to know this, anyone pursuing lyme testing is well advised to not just rely on their regular doctor (if not seriously versed on lyme) to select the tests to run and interpret the results.

 

 

Michael, Thank you for the heads up. I am reading to understand more. For some of these disorders/diseases, I really did not know much in the past.

 

My dd is a bit better with the eye/facial tick, it decreased since we introduced the diet and reduced TV/PC games. However all other ticks (and some new) are still there.

 

Wishing you all best wishes for 2011.

 

 

Best Regrads

Amy

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