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Hi, not only am I new to tic disorders, I've also never posted to a "forum" before!

 

The background: My 6.5 year old daughter woke up on Mon, April 21 of this year with about 5 tics, she went to bed the night before perfectly fine. My 3.5 year old son had undiagnosed strep throat that whole previous week and started on antibiotics Sun, April 20th. We took my daughter to the pediatrician and he ran a throat culture on her and that came back negative. We then got a referral to the neuro. and we have been working with him since. Her tics seem to change weekly, sometimes just a neck tic other times just eye rolling...etc. When she first woke up with them it was so obvious something wasn't right....neck "stretching" as she calls it, eyes looking up, shoulder shrugging, hyper, odd mouth movements....etc. Now, like I said it's usually one or two at a time but can change. I've seen alot about PANDAS but her culture came back negative, so I don't know what to think of all this. I spoke with our neuro about the tics-tourettes book I ordered from here and he said he would run some blood work for allergies, I'm sure its not as in depth as an enviro physician but is this a good place to start?

 

I'm not sure if I should get a second opinion from another neurologist? Go find an environmental physician now? Request an MRI, EEG, more blood work? I cannot just "sit and wait"....I'm literally going insane.

 

We are in the San Diego area, does anyone know of any neuros, environmental physicians I should start with or consult with?

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Just wanted to give you a virtual (((hug)))! YOu may or may not be dealing with Pandas. I know they can check for Strep Titers via a blood draw but others should come on here with more information for you on that. I am in Phoenix and have found a great naturopath from networking on this sight. So, hopefully others will come on. Many of us know what you're going through. My ds started with tics out of the blue back in November and I haven't seen it stop except for a day here or a day there. I don't think he's a PANDAs case, either. I do suggest finding a good enviro. doctor or naturpath or DAN doctor b/c most folks on here have found great success with those routes. Hang in there! Congrats on your first posting, too!

Bonnie

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Hi and welcome tho so sorry to hear of this

 

I would definitely urge you to have PANDAS blood testing run....the strep that can cause tics and OCD is frequently not detected by throat swab...only blood tests for the strep antibodies can show it. Many kids have tested negative for the culture only to have the blood test show very high strep antibody titres

 

PANDAS kids usually respond well to antibiotics (many here report that zithromax/azithromycin has good results)

 

if you use the search button at the top of the page and enter PANDAS you will get a lot of info on this condition.

 

sadly not many mainstream docs are clued up on it tho so you may need to find one who is

 

PANDAS parents will be on soon and provide more info for you I am sure.

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They did put my daughter on azithromycin (she is allergic to penicillin) for a course. Not sure if that made a difference or not. Like I said, it has been almost two months now and even though there are not 5 tics anymore - there are still 2.

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Hi, not only am I new to tic disorders, I've also never posted to a "forum" before!

 

The background: My 6.5 year old daughter woke up on Mon, April 21 of this year with about 5 tics, she went to bed the night before perfectly fine. My 3.5 year old son had undiagnosed strep throat that whole previous week and started on antibiotics Sun, April 20th. We took my daughter to the pediatrician and he ran a throat culture on her and that came back negative. We then got a referral to the neuro. and we have been working with him since. Her tics seem to change weekly, sometimes just a neck tic other times just eye rolling...etc. When she first woke up with them it was so obvious something wasn't right....neck "stretching" as she calls it, eyes looking up, shoulder shrugging, hyper, odd mouth movements....etc. Now, like I said it's usually one or two at a time but can change. I've seen alot about PANDAS but her culture came back negative, so I don't know what to think of all this. I spoke with our neuro about the tics-tourettes book I ordered from here and he said he would run some blood work for allergies, I'm sure its not as in depth as an enviro physician but is this a good place to start?

 

I'm not sure if I should get a second opinion from another neurologist? Go find an environmental physician now? Request an MRI, EEG, more blood work? I cannot just "sit and wait"....I'm literally going insane.

 

We are in the San Diego area, does anyone know of any neuros, environmental physicians I should start with or consult with?

Hi, I am new this help line. I didnt even know it existed. I have a 10 year old son who has been batteling with tics most of his life. I noticed when he was a toddler how organized he always had to have everything;his cars lined up perfectly, he would always straighten the throw rugs, always had to have clean hands and those are just a few of the things. then at 4 years old he went into dayare, and i noticed how shy and scared he was of being there, so i quicly removed him after only 1 month of trying it out. Then by the time he was 6 he was in kindergarten and he was always moving his eyes off to the side, then he was clearing his throat continually, then he was rubbing his fingers together excessively..and it would change every couple of months..the throat clearing is almost always with him. I have 2 other boys who dont have any signs of the tics. My ten year old is extremely bright, he has been in the gifted and talented courses at school since the 1st grade. He is very thoughtful and extremely sensitive. His father and i have not been together since he was four, and i always knew it would affect him in some way but i didnt know this much. and i say this because i noticed that when his father began to actually be proactive with his visitations my child was becoming more withdrawn and timid and the tics intensified. then when he was 8 years old I had to rush him to the hospital because his father had abused him with a 2 x 4!! i was devistated as was my son. I started taking my son to a LCSW so he could talk about his issues and of course she notice some of his tics, she told me not to make a big deal about them and in time he would conquer them, but that i should make him aware of them so he could take ownership of them. Apparently they dont even know they are doing the tics most or all of the time. after about 6 months to a year of his therapy his tics slowly lessoned and almost disappeared, infact during the summer they were GONE!! then school started up again and about 1 month into the schl year i notinced little signs again that they were back. but not as prominent as before. well, just last month we have been ordered to start family therapy with his father; so my son can make peace within himself they say, the tics are back in full affect. the throat clearing is worse than ever and he has started to shift his eyes again. I am so torn on what else i can do, i have been told an anti anxiety medicine might work, but i dont want to medicate my precious child. when his brothers and him argue, as all boys will do, i feel that if i punish him i will aggrivate his stress and his tics.. My heart braks for him, because i cant imagine the horrible things that his father must have been doing and saying to him to almost trigger these tics. Does anyone have any advice on what i can do to help him, any foods, medicines or just good old fashion advice for me..I really feel alone in this sometimes.Not helpless just alone and confused on how to help him. As his mother i know i should be doing more to help him with this, bu i just dont know what to do. His doctor says he will grow out of it, his therapist says he will as well. but children can be cruel and he goes into the 5th grade this fall, and i dont want anymore pressure than there will already be added onto his plate.. thank you for reading, and please help me..

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hello harmonii and so sorry to hear of all you and your son have been going through

 

it is late and so I am not even going to attempt to post any info for you, but would encourage you to look at the pinned thread here called essential threads and start reading other info on the things that have helped others with tics here.

 

for now I just wanted to welcome you and say you and your son are in my prayers

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