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Anyone with tic-only Pandas symptoms?


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Nela --

 

My 5-year old son's main symptom is a motor tic - began the day after receiving vaccines and the flu mist. He was diagnosed by Dr. L and put on antibiotics a little shy of 3 weeks after motor tic began. During that time he started exhibiting a few other symptoms (crying over things he would not normally cry over, saying he is scared of things he normally would not be afraid of, restless legs, and wet the bed 2 nights in a row). However, all of these symptoms were mild. Dr. L put him on augmentin and a steroid taper - all symptoms except the motor tic improved or resolved. Motor tic did not get worse but did not get better. She then put him on clindamycin for 2 weeks - motor tic improved slightly for one week and then went back to how it had been. We just saw Dr. L again last week - she kept him on clindamycin and we are doing another steroid taper (stronger dose this time). I am keeping my fingers crossed that it works!

 

Meredith

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We started out with noticable motor ticcing. The other symptoms, as well as the development of vocal ticcing, followed later.

 

We didn't seek any type of treatment until DD's pain/fatigue symptoms started to become unbearable because I originally thought that DD was just a ticcy, bed wetting, aspergerish, ADHD kind of kid.

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Nela -

 

His strep screen was positive back when he was tested at the end of January. If I understood Dr. L correctly, she believes that staph can sometimes be present with strep and the augmentin will take care of the strep but won't do anything for staph - that is why she put him in clindamycin. Interestingly, prior to pandas, my son has always suffered from bloody noses, nasal congestion, and awful breath. I repeatedly brought this to the pediatrician's attention as well as his ENT (son had t/a when he was 2 because of sleep apnea). My concerns were always brushed off. The augmentin cleared up all of his nasal problems - maybe he had strep in his sinuses??

 

Meredith

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Mpatti,

 

It seems as if you are talking about my son....He has his tonsils and adenoids out at 3.5 due to sleep apnea. He has suffered and continues to suffer from sinuses infections/congestions. I also have a hunch about strep in his sinuses. We have negative strep results though. Did you ever run any other tests on your son? What other treatments were helpful to you? How is he doing now?

Thanks

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My husband and I are now convinced that my son's sinuses were chronically infected.

 

Dr. L ordered a bunch of different blood work - a couple of things came back out of the normal range but she was not concerned (for example, vitamin d was a bit low so she said to give him a vitamin d supplement, ana screen was positive, anti-nuclear ab titer was 1:320, C4, serum was a bit low, ceruloplasmin a bit low). I am in the process of trying to research these things to figure it out. In addition, she had him tested for lyme through stony brook lab. He tested negative, but did test positive for band 41. She was not concerned and does not believe he needs any testing for co-infections (stony brook does not test for lyme co-infections, would have to be done through Igenex).

 

We have not done any other treatments but the ones I described in my other post. I give him Florastor 2 times each day and a multi-vitamin.

 

With the exception of the motor tic being a constant reminder to my husband and me that something is wrong, my son is doing really well He is happy, goes to preschool without any issue, plays (and fights) with his sister all day. It is hard because he is 5 - as I told Dr. L, I have already forgotten what he was like before the pandas diagnosis. Now, when he cries over something or is acting a bit hyper it is hard to determine if it is a pandas symptom or him being a 5 year old boy.

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No, he is on a full dose, not a prophylactic dose. As for the Florastor - I give him 2 packets of the Florastor kids each day (I mix it in water or milk).

 

Have you found anything that helps with motor tics that you can recommend I try for my son?

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Mpatti,

 

I have not found a single thing to help with the tics. We have vocal ticcing as a main concern. It is constant and he never gets a break. That's why I am researching like crazy to see if he has an infection/virus that we are not aware of. He is not taking any antibiotics so far, and that concerns me. We have a pandas diagnosis from Dr. K in Chicago, but he is a big proponent of IVIG as a treatment at a later age.

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Tics are our main symptom here too. During an exacerbation we will see ADHD, a little OCD and some changes in voice (baby talk). However baseline and flares are tics ONLY. Baseline is almost tics free for us and I am hoping we can get back there.

 

DS has motor and vocal tics - pretty much every kind you can have besides copralalia (cursing). Before our PANDAS dx we changed his diet significantly - we went GFCF corn free, low sugar, killed yeast and partially addressed methylation. We supplement with glutamine, NAC, probiotic, borage oil, GSE (for yeast) and a methyl B complex (for methylation). This helped him get back to virtually tic free......until he got strep again.

 

once we got the dx of PANDAS he went on azithro 75mgs daily which got his tics back to baseline. But with each flare they came back so I upped his dosage to 150mgs of azithro daily and they went back down.

 

Recently his brother got strep and seasonal allergies have been bothering him. So of course another flare. Mind you we are only talking tics as his symptom for the most part. He is fully functioning in school - no IEP of 504 and tics are mild in school according to teacher.

 

We found that by treating his brother for strep and adding in Allegra for allergies we were able to reduce his tics back to baseline.

 

Praying that is stays this way for a while......

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i am also exploring essential oils for inflammation. Copaiba is a wonderful oil for inflammation and I have been giving him that orally (2 drops) in his applesauce daily. However, I noticed one day that he increased his tics right after I gave it to him so I stopped. Many people sing the praises of Copaiba for reducing inflammation and tics. i will try it again at some point to see if it has the same effect on him.....

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cara615,

 

How long did you stay on the diet or is your son still on the diet? We are going to run some bloodwork (per our Integrative Docs orders) to check for methylation issues. My son has 35 different food sensitivities (food allergy testing through blood). I did keep him on a GFCF diet for a few months but saw no change regarding tics. We are supplemention with Bovine colostrum, Vitamin D3 4000IU (his level was 13), and Nystatin here and there to control yeast levels. His arabinose was high and his amino acid levels were almost 0. We have not supplemented with amino acids though. So hard to decided what to do.

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