update

[britneymag]

Allison, when you first started the azith what was the dosage that you used for the 15 days. When you say that he is now on 500ms every5 days do you mean he takes 500mgs on one day and then takes nothing for 4 more days? I ask because the dr who is helping me does not know anything about PANDAS and only goes by what I tell him for dosage. We are on 600mgs augmentin twice a day and it has stopped working. She has been on this dose for a month now and it only worked for a few days. She has OCD issues but is mostly ADHD and Tics.

 

Melanie

 

Also, what probiotic do you use. They all seem to have strep in them.

[momaine]

Allison, when you first started the azith what was the dosage that you used for the 15 days. When you say that he is now on 500ms every5 days do you mean he takes 500mgs on one day and then takes nothing for 4 more days? I ask because the dr who is helping me does not know anything about PANDAS and only goes by what I tell him for dosage. We are on 600mgs augmentin twice a day and it has stopped working. She has been on this dose for a month now and it only worked for a few days. She has OCD issues but is mostly ADHD and Tics.

 

Melanie

 

Also, what probiotic do you use. They all seem to have strep in them.

 

 

What do you mean, they have strep in them? We use Culturelle. It is what the doctor recommended in the book Saving Sammy.

Angela

[mk8898]

Allison, when you first started the azith what was the dosage that you used for the 15 days. When you say that he is now on 500ms every5 days do you mean he takes 500mgs on one day and then takes nothing for 4 more days? I ask because the dr who is helping me does not know anything about PANDAS and only goes by what I tell him for dosage. We are on 600mgs augmentin twice a day and it has stopped working. She has been on this dose for a month now and it only worked for a few days. She has OCD issues but is mostly ADHD and Tics.

 

Melanie

 

Also, what probiotic do you use. They all seem to have strep in them.

 

 

What do you mean, they have strep in them? We use Culturelle. It is what the doctor recommended in the book Saving Sammy.

Angela

 

Angela - We are also using the Culturell. Are you using the dosage for Kids that are in powder packets? Are you using it once a day?

[momaine]

I'm using the adult version, once a day between antibiotic doses. Dd is 13 years and 93lbs.

Angela

 

 

Allison, when you first started the azith what was the dosage that you used for the 15 days. When you say that he is now on 500ms every5 days do you mean he takes 500mgs on one day and then takes nothing for 4 more days? I ask because the dr who is helping me does not know anything about PANDAS and only goes by what I tell him for dosage. We are on 600mgs augmentin twice a day and it has stopped working. She has been on this dose for a month now and it only worked for a few days. She has OCD issues but is mostly ADHD and Tics.

 

Melanie

 

Also, what probiotic do you use. They all seem to have strep in them.

 

 

What do you mean, they have strep in them? We use Culturelle. It is what the doctor recommended in the book Saving Sammy.

Angela

 

Angela - We are also using the Culturell. Are you using the dosage for Kids that are in powder packets? Are you using it once a day?

[P_Mom]

Hi Allison...great news.

 

Can I ask...when you said you would have to do a full round of antibiotics every 3 months or so...what do you mean by a full round? How long, how much, and of what antibiotic? Did it settle things down?? Would you do a full round for a minor increase, or just ride those out??

 

Thanks!!

 

Kelly

[ad_ccl]

We just use a plain old acidophilus now. We used to use a probiotic that did have the strep ingredient in it - we did not realize it until later - Ronna had told me her son was not doing great on the probiotics so we tried taking our son off them and he leveled out even more - so when we added it back in we just use the acidophilus to be safe. I keep meaning to go and look for a good probiotic but he has been doing ok with what he has. We ran out a few weeks ago so he has been without - the other day I gave him one of the chewable one's my younger two take.

 

For dosage - yes we give 500mg on one day then 5 days later give another 500mg etc. nothing in between. When we do a full dose run we used to do 1 day at 500 mg then 4 more days at 250 mg. We found that was not always long enough so started to do a 10 day run - 500mg on day one then 250 for the next 9 days.

We do just ride out minor tics - we did not want to put him on extra antibiotics unless really necessary. (I had taken a paper in to my doctors about azith - the recommended dose was once every 7 days which is what we had started with but found we had tics leading up do day 7 - so every 5 days worked better (as it did with Ronna's son too).

 

The only antibiotic we have used since the summer he turned 8 is azithromycin. The first two years he was on several antibitoics - biaxin for about 6 months (full dose daily) then amoxicillin for almost 1.5years (prophylactic dose) - then we tried taking him off antibiotics and it was a disaster - all tics came back and he was not doing well at all. Amox no longer worked when we put him back on it - then we tried 5-6 different antibiotics alone and in combo over a period of about 6 weeks. Then azith a week before school was starting - what a miracle.

[momaine]

We just use a plain old acidophilus now. We used to use a probiotic that did have the strep ingredient in it - we did not realize it until later

 

 

Can you elaborate on what this ingredient is?

 

Angela

[ad_ccl]

I believe it was Streptococcus thermophilus.

 

Not 100% sure - as cannot remember the brand we used to use so I was not able to google an ingredient list - it was a few years ago. Whatever it was it had the word strep in it.