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[Mommy2MCL]

We were recently diagnosed with TS due to simple motor and vocal tics. Eye rolling, head roll, sniffing, clearing throat and a hum sound. We saw the top neurologist in Houston that deals with this. But the more I read about PANDAS I wonder. I was hoping y'all could give me some feed back.

 

Here is our medical history with this...

 

-Feb 2012- Noticed her eyes would roll back. Lasted 3 days. Called Pediatrician said it probably was allergies. Went away.

Feburary 2013 Diagnosed with Strep at Walgreens Clinic. Not sure what strand but it was a throat swab. She never really had strep before but my younger 2 boys have.

-April 2013 Went to a birthday party where there was a miniature horse… Noticed rapid blinking and rolling eyes back in head. Not a seizure bc she was completely in the moment.

-Took to pediatrician and he said allergies. Suggested moisturizing eye drops.

-Lucked out and got her into Dr. Eric Miller and he agreed with the allergies. Strucure of the eye was perfect and 20/20 vision

-June 2013- Ear Infection. Has other symptoms that equate to allergies. Sniffing, clearing throat ect… So we wait it out. Started on Zyrtec and Flonase

July 2013-Symptoms continue and I call Pediatrician again Prescribed Azalistine. Finally saw some relief. Eye rolling and blinking went from frequent to everyone in a while.

August 3- Started coughing, runny nose ect. Eyes went crazy. Friday she threw up. Didn’t know if it was mucous or a stomach virus. Took her to dr & She had a sinus infection. And a Stomach virus. After she had thrown up her eyes were the most stable they had been since April. First Antibiotic did not work. She showed no improvement Took her back to dr and she was prescribed Zithromax, this was the Friday before school started.

August 13- Took to Allergist. Tested for allergies but she only reacted to a slight mold mix. Also gave us Bepreve Eye drops. She was still sick from the sinus infection so he prescribed her a steroid to see if it could shock her system to stop…

Sept 3- was follow up with allergy dr. Still had eye rolling not horrible. Still had sinus infection. Prescribe Zithromax again. Said we didn’t need to see him. Didn’t know what was causing it but didn’t’ think allergies. After 2 complete courses of Zithromax her eyes stopped for several days.

Sept 18^th-Took her to ENT. This was during her most symptom free time. Thought I was crazy just a behavioral tic… Said to take her off of Zyrtec, Flonase, and Azalistine.

-After about 5 days her eyes had started up again and the blinking. Went ahead and restarted Azalstine. Eyes calmed back down and we have been on that since Sunday. Sat and Sunday her eyes ticked more but she also complained about them being very dry and we tried the Bepreve again.

Sunday we stopped Azelstine and her eyes have increased in blinking and rolling. She has increased Sneezing and clearing throat.

Other points

-85% of time she was sniffing or clearing throat she had mucous or actual stuff she was moving around.

-She worries all the time…. Sometimes it hinders her from falling asleep.

3 week of school she had a meltdown. Also right before her 1^st math quiz. Everyone says 2^nd grade is an adjustment

Dad left for San Diego for 3 days for work and she cried and cried. Inconsolable.. Did that one more time when he wanted to go watch football.

He is in Oklahoma now and no problem…

During her meltdown she had minimal tics and eye rolling

Dances on competitive dance team

Only OCD tendency is mild and she must take a bath at night.

She has had several emotional outbursts of crying and its very hard to calm her down.

Right now she is running a temp and seems to have a virus. Dr. believes it is Viral. 2-3 days of fever and 5-7 of sore throat. Tics are bare minimum

 

Thoughts? The Neurologist diagnosed with Mild TS. We started her on Magnesium but are waiting it out because so far it is not affecting her. Her eyes are very sensative. Any type of smoke or airborne irritant will increase blinking but eye drops help on that account.

 

Thank you.

[pr40]

you may want to do some blood tests, auto-immune panel, strep, myco, lyme, etc. please see pinned material for the list of tests to do.

PANDAS is an auto-immune condition, see if auto-immune conditions run in your families.

Contac a PANDAS dr and get on a list.

there were several people who recently joined with children with very similar TS symptoms. see what responses they got.

good luck.

[Mommy2MCL]

The only auto immune disease I know of is juvenile diabetes which my brother has.. We also have no history of TS Possibly extremely mild OCD but undiagnosed and not life altering...

 

Any PANDAS dr. in the Houston area that come reccommened

[blakes_mom]

Wow your symptoms sound very similiar to my son. He also had the eye rolling blinking tics. My son was diagnosed with PANDAS and is currently tic free. Your daughter sounds like it may be pandas. Pandasnetwork.org has some good information and a list of treating physicians by state. I would try to get an appointment with a treating Pandas doctor. My sons tics were cleared with antibiotics long term and a T & A.

[Agnes26]

I would run labs, too.

[Missmom]

My son with pandas also worries constantly, even during the times when he is mostly symptom free, however when he flairs the worrying climbs to another whole level. It also hinders sleep. He also tics when he is sick or exposed. A lot of sore throats. My son takes augmentin and it keeps his tics away. It sounds like you are on the ball and ahead of the game as far as pandas goes. Get the labs run, but those numbers don't always rule out pandas.

[qannie47]

I have come to have a very high respect for what Strep can do....You posted pos Strep + concurrent Sinus infections. I have learned that Sinus infections are also Strep. So there is your history. It also appears that the Azalstine provides a fair amount of relief for your dd. If you look at some recent posts, you will find that some are finding relief from meds that contain antihistamines...I agree that you should pursue a possible Pandas connection. If you decided it is not applicable, you can rule it out. On the other hand, if caught early, you can save yourself a lot of time and aggravation running to 12 different doctors. The upside also is that it appears that with Pandas, the earlier it is caught and treated, the better. Good Luck!

[Mommy2MCL]

Thanks everyone! What blood work should we ask for? Looks like we are heading to our regular doctor tomorrow. She has had a fever for the past 3 days... If they are going to take blood might as well see if we can get a number.

 

 

I really appreciate all of your help

 

Megan

[Dedee]

I wouldn't get your hopes up that your regular doctor will be much help. Most doctors will blow you off when it comes to this type thing. They will tell you there isn't an association between infection and tics or behavior. This is simply not true of course and there are many studies to back it up. Quite simple the majority of the main stream medical community is ignorant when it comes to PANS and arrogant when you try to discuss it with them. Your best bet is to make an appointment with a PANDAS / PANS specialist. I sounds like you definitely have symptoms that correlate with infection driven tics and anxiety. Fortunately it hasn't gotten to a point that it is life altering yet. Unfortunately, it could become extrememly serious at any point. That's why you need to get in to see someone as soon as possible and get ahead of this before it gets out of hand. You are smart to stay on top of it and a good Mother to keep researching even when the doctors are not encouraging. Keep pushing and get your daughter the help she needs.

 

Dedee

[Mommy2MCL]

Thanks again ladies...

 

So here is some more interesting background... DD had an emotional outburst Tuesday. Cried for over and hour... Guess what Strep... I talked to her Pedi Told him my thoughts and how she fit the symptoms. He was very neutral and pretty much said that he didn't know enough about it. So at least he didn't kick me out. I am going to get an appointment with a Dr. that has been recommended by several sites. He seems to be a new doctor in Houston that is helpful.

 

From being sick her tics have returned. Mainly rapid blinks, minimal eye moving and a low hum...

 

Each night I prayed for the strength and a sign to know what to do best with the diagnosis of TS. My research of diets and things led me here an I can't help that a strep infection this close to a diagnosis and my main research is not pointing me in the direction that I have to follow through.

 

I may have a ton of questions so I look forward to getting to know many of you.