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screaming toc back


my2sons

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After 8 months of slow and steady progress to about 98% tic free my DS's screaming tic has returned full force. I am literally about to have a nervous break down. It's been up for three weeks now. I don't know how to do this again. I was so hopeful with his progress and so was he. I feel so defeated.

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Hi

deep breath and remember........this too shall pass!

 

It may be a good idea to do some sleuthing and try to detrmine if anything may have triggered this tic and then work to eliminate it

 

I am not sure if you had ever tried the L-Carnitine? Many find it really helpful for vocal tics, including the screaming ones

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I have tried the L-carnatine before, I can try it again. Can't really say whether or not it helped before since we were seeing such improvement with diet. We had blood work done Thursday for the IGG food test and the ALCAT. It just becomes so nerve wracking with the constant screaming going on. I have wracked my brain trying to figure out this flair and what triggered it. I have no idea but i think it is gut related because his tummy has been bloated ever since the flair started. My dad hunts and has a deer processed into ground meat fot us every year. We just got this years supply about 4 weeks ago. My husband and I are wondering if maybe something was put into the meat that he is reacting to. We are going yo have to check.

Edited by my2sons
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Please visit SafePlate. My daughter, Jessica, suffered with a movement disorder for 5 years. The tics, OCD behaviors, ADHD and trouble sleeping were disabling. We tried supplements, diets and other therapies. After years of research, trial and error, I found the least invasive and least expensive therapy to be the most effective. She experienced a 95% improvement in symptoms within a month. It's a safe website and I'm not trying to sell anything. My hope is that if we can help another family, it will bring meaning to the years Jessica suffered.

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  • 4 weeks later...

Dear,

 

my son has a screaming tic too - so I know how You feel. He can go from a quiet one up to a very, very loud scream every minute. You can check my posts here, and on pandas forum too because I still don't know where we belong. We are fighting this scream since he was 8, and he is 14 now.

 

he was at the hospital 4 days ago for 10 days, and they found that he has EBV and HHV 6, so I'm traying to find a way to solve this thinking that maybe EBV is causing a flare.

 

I haven't found anything to calm this scream yet. It's horrible, loud, every 2 seconds somethimes..somethimes it last for 3 weeks, somethimes for 2-3 month.Than it goes away and motor tics come, so they just switch .

 

I'm also gonna have a nervous brake down,..just can't stand it anymore.

 

every time he get's better I hope they will maybe never return. But they do and I hate them..so, the point of this post is that You are not alone. I know it's not helpful, and I'm sorry..

 

The only thing I can recommend is botulin injection directly oraly in his troat. This was recommened to us by a TS docotr in Milano, Europe. But, as said at the time we were dscovering pandas because of his history of strep and high ASO titers, so we never tried it. But, if it continous to be like this, I will think about it as an option.

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  • 2 weeks later...

I am so sorry to hear about the screaming tics. My DD is talking about having the urge to scream, but it hasn't happened yet. May I ask you - what are you doing about school? She is starting to have some trouble and has a modified plan, but wondering if I should home school? The school is being very understanding and accommodating, but I am just not sure she is learning much as she is so distracted.

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