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We're still investigating what could be the cause of my ds8 sudden tics. We found that he had an infection so we started treating him with abs (it looks like it is PANDAS).

Anyway, so far no improvement, there were some better days and now some bad days.

I'm continue to check if there are other ways that I can help him.

The "head of immunology of UCLA" was a disappointment, he recommended us to give him Neurotin, and some abs. I'm not going to give him any medicine, so far it is very hard for him, but he can continue doing the regular things (school/play/etc).

Questions:

1) What is the best allergy test ?

2) What is your experience with therapy? we started sending him to therapy, and we're not sure if this is a good idea. some people say it is better to ignore the tics, and if during therapy they talk a lot about the tics, maybe it makes the things worse?

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Hi Deby

 

I replied to your other posts but will just repeat here....

 

if the first antibiotic was working....why did you switch to a new one....and if the 2nd is not working as well as the first....why not switch back?

 

re the CBT, I replied with more detail on your other thread, but CBT's usefulness for tics is limited, mainly depending on what the origin of the tics are and yes, for some people with TS, it may even be counterproductive to do CBT for tics...but is very helpful for the OCD etc that often accompanies TS tics

 

 

there is no one best allergy test as again, it depends what you are testing for. Food allergies are tested differently from environmental allergies.

 

here are some pointers on some of these tests

http://www.latitudes.org/forums/index.php?showtopic=755

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Hi Deby

 

I replied to your other posts but will just repeat here....

 

if the first antibiotic was working....why did you switch to a new one....and if the 2nd is not working as well as the first....why not switch back?

 

re the CBT, I replied with more detail on your other thread, but CBT's usefulness for tics is limited, mainly depending on what the origin of the tics are and yes, for some people with TS, it may even be counterproductive to do CBT for tics...but is very helpful for the OCD etc that often accompanies TS tics

 

 

there is no one best allergy test as again, it depends what you are testing for. Food allergies are tested differently from environmental allergies.

 

here are some pointers on some of these tests

http://www.latitudes.org/forums/index.php?showtopic=755

 

We switch Azithromycin since the doctor (Dr.T) thought it is better for pandas, but yesterday was worse and it might be related to Herxheimer Reaction.

Today his tics were not so bad, but his mood was edgy. I don't know, it is so hard to tell if it is working or not.

I think I'm going to stop with CBT, my feeling is that it is not helping in his case.

I need to do some research on allergies, I'm trying to find the trigger for his tics, and till now I can not point to anything in special.

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  • 3 weeks later...

Debbie, I am sorry for what you are going through. I am in pain too from what I have seen from my little 7 year old son. I have hit a real depression, because my once normal boy has changed. It was as if he was on top of the world, doing public speaking, drama, reading liturgies at school, winning contests, and then he started turning his head from side to side, stretching his mouth, and shrugging his shoulders. I kept thinking: the higher they climb, the faster they fall... because he was the number one kid at school, winning all sorts of contests because of his abilities, and then boom...he suddenly changed. When doing homework or reading, he would turn his head repeatedly, as if that was a stressor for him. The shoulder shrugging did not seem connected to stress.

 

Like you, we had put a lot of pressure on him to do all of these things, like a piano recital, composing a song for piano class, practicing and memorizing all of these readings for school, and generally involving him in a lot of extra curricular activites. The week right after his "great" award time, he was suddenly hit with a throat infection and fever. He had been up very late the week before because of choir and all of these crazy activities that kept him up. Also, I had let him stay up late, which was a rare thing. He was upset because of all the pressure we were putting on him to know his lines really well, and he would often say "stop I don't want to do that anymore". I have it all on video. So...staying up late, putting pressure on him, winning at all sorts of things, then...getting sick.. that was it... my son suddenly changed. Just at the end of April, all of May and most of June I have been just devestated by all this. It has been really hard to function, yet I have. My husband has asked me where his wife is, because I don't appear present, and I told him that I was depressed. I cried every single day. Not just cried...totally totally bawled. I would go to work with the thought of my son in my head. I would cry in the car on my way to work, I would quietly have tears at work, and I would just let it all out in the car on my way home. I had always spent a lot of time with my son, but now I spent all my spare time with him. I appreciated him even more. I pulled him out of almost every program, and kept him in what he likes, which is soccer.

 

My heart sank when I took him to a live play, and he kept turning his head from side to side. I was totally devestated. What had happened to my son? I prayed and prayed and prayed. I keep praying. I have been in this nightmare for a while, and am just getting out of it. I kept wishing that I would wake up from the whole nightmare to discover that it was just that...a nightmare, not reality. I was ashamed, and I was sad. I felt helpless. What happened to my child?

 

I want to have hope that things will be better.

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hi,

What you said is exactly what I wanted to say. IT seems we have so many in common except my son is eight. My son's tics got suddenly worse from May and his nature has changed ever since. He becomes even more sensitive, fearful and constantly worried. Has your son made improvement so far?

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hi,

What you said is exactly what I wanted to say. IT seems we have so many in common except my son is eight. My son's tics got suddenly worse from May and his nature has changed ever since. He becomes even more sensitive, fearful and constantly worried. Has your son made improvement so far?

 

He is doing better, he is on abs (already 30 days), we discovered high titers and strep in some members of our family.

I'm starting to suspect candida or yeast, I think the mayor improvement started to happen when I added pretty high doses of a good probiotic.

I think I'm going to do some of the tests that Great Plains offer.

We also trying to avoid artificial food/buying organic/ we do epson salts/multi vitamins/fish oil.

We removed the carpets from his room too.

From all these things I think(but it is hard to tell) what helped the most in this order: antibiotic, probiotic, taking out all stress, then the rest.

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re:

I need to do some research on allergies, I'm trying to find the trigger for his tics, and till now I can not point to anything in special.

 

There was a great book by Doris Rapp called "Is this your child?" (Or "Is this my child?" ...or something like that).

 

It was all about food allergies and children. It had alot to do with ADHD, but it (as I recall) explained ALOT re: food allergies, and testing for them.

 

The one thing I learned is that blood tests and skin test MAY show a food allergy.....but they can also say you're NOT allergic....when really you are....(e.g. they dont always show up on those tests).

 

As I recall, the Doris Rapp book went into how to do food elimination diets to determine food allergies. From my experience for myself and my kids, ....the elimination diet is what will "really" show you what's causing what, if it's a food allergy.

 

When you re-introduce a food that's been eliminated...within 24-48 hours you'll get the SAME symptom that food is causing --->only GREATLY maginified.....so that you will be left with NO DOUBTS that there is a connection between THIS food, and THAT symptom.

 

 

 

My heart goes out to all of you......I've BTDT........it's heartbreaking/frustrating/and everything else!

 

 

The "waxing/waning" nature of the tics makes it SOOOOO difficult to problem solve what's "causing" them... ---> you think...yea! the tic is GONE.....that was IT!.....but then you realize....sigh...it's just a DIFFERENT tic coming to take it's place......

 

(the GOOD NEWS is......my son was fortunate, and somewhat "outgrew" it...he's in his 20's now and fine.....no tics.......and many others have similar situations......I'm wishing all the best for you~~!!!!!!)

 

 

((((((((((((((((hugs, hugs, hugs)))))))))))) to all of you......there are alot of great folks here with lots of good advice and experience to share with you............

 

give your little sweethearts an extra hug from me tonight (said by "empty nest" mom here :):) )

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Hi guys,

I'm also new in this, a few days ago my 6yr old son had a fever and we started to notice his eyes where blinking a bite but little do i know what it was ! until we when to our pediatrian who was also a nerologist !!so he told me he have a mild virus but that wasn't the cause of his blinking and that it looks like a mild caseof tics.....well that when my world come crashing down on me!!!!he told me that is no cure for it and to watch it for a while to make sure of probe.and also he told me taht tics in chilren that age does most likely go away and not to worry too much but as a parent how can i do that. however he prescript some vitamin B complex with iron. but i notice a noticable slowing down of the blink after about one to two days. so i started with the endess hours researching and came up with "END YOUR CHILD'S TICS NOW" by Steve Driskil. about how magnesium is the key of ending children tics systom! please can you guys share some light on this. i'm destroy by this because i love my son so much iknow that all of us do! but please help! thank's and god bless.

 

Rob.

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Thank you all for your advises, tomorrow I'm taking my DS8 to an allergist, we will start with the skin test and then probably the blood test.

I know that it could show no allergies, but if it shows at least I have a direction .

I'm also starting to suspect that he has candida/yeast so maybe I'll ask the allergist to perform some OAT tests.

Will see tomorrow, thank you!!!

Rchan, yes, Magnesium seems to help tics (at least this is what lots of people in this forum say, we didn't see improvement just by giving Magensium), we are giving Natural calm and epson salts baths.

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