cara615

i was reading some old threads and came across one about streptococcus bacteria in a probiotic. I give my son Klaire Labs Ther-biotic with 25 bill CFU's. i just looked and it contains strep bacteria. I am wondering if this is bad since we are thinking he may have PANDAS due to a recent increase in tics associated with a positive strep test. He's been on this probiotic for months now with no issues - tics were at a very low level from Aug - Nov. Is there a difference in the type of bacteria in the probiotic that makes it good versus bad? Any thoughts on this?

That is what I was thinking!!

Ped just called in a 10 day course of cephalexin!!! It's usually a 5 day course but she it letting me double it so we can make sure the STREP is killed. Should I switch mid course into the amoxicillin or should I do the full 10 days on amoxi? We are on day 5 today.

5htp as well as taurine all increased tics in my son.

Hi, i started on your journey this past May. We got a dx of TS/OCD/ADHD and anxiety. We went straight to a holistic MD. We tested for food sensitivities. We had to remove gluten, dairy and corn. We also have a methylation issue and are supplementing with a methyl B complex. We also give NAC (N-Acetyl Cystiene) 1200mgs a day to help with detox (something that doesn't happen when you don't methylate properly. We give strong probiotics (25bill) as well. One thing you may be missing is a candida issue. Looks like you are on the right diet to kill some candida. We went low sugar and removed all yeast promoting foods (vingegar, etc). We gave grapefruit seed extract 4 drops in the AM and 4 drops in the PM for 6 weeks. We saw some die off and tried to help the detox process when that happened but we saw great improvement with the GSE for candida. We are also awaiting results of a stool test and I think that will show A LOT!!! Bacterial infections could be the culprit too. I say this because we thought we were dealing with TS however I am exploring PANDAS now because my son was pretty close to tic free with all the diet changes and supps but in the last 2 weeks his tics have skyrocketed and we got a postive STREP test! But I just wanted to let you know that our son will be 6 in Dec and he has had vocals for over 1.5 years and motors for about a year. They were mild and would come and go and completely disappear for months at a time - until this past April. This past April they got SEVERE and debilitating and that is when we got our diagnosis and sought holistic treatment. Now we may be on a different path to resolution, but resolution is what it will be in the end!!!

I have helped my children with ear infections by using Thieves essential oil around the outside of their ears. Thieves is made by Young Living and can be ordered on line. It has the essential oils of cloves, cinnamon, lemon, eucalyptus and rosemary. These oils (especially the cloves) have strong antibacterial and anti viral properties. Will it cure the infection? It could. it has for us. We suffered greatly with ear infections. If you get the oil, you should dilute it 1:1 in coconut or olive oil because its a "hot" oil. Then rub 3 to 5 drops around the outside of the ear. Make sure not to get any of it inside the ear canal. Garlic oil drops can help with pain, if there is any. Hope this helps.

What a great post. Thank you! it really explains a lot of things and puts into perspective how elusive this "disorder" really can be. To me, a sharp increase in tics associated with a STREP infection and then subsequent resolution in response to abx is proof enough that we are dealing with a PANDAS kid. Today is day 4 on abx and slowly, very very, gradually, we are seeing improvement. Nothing drastic yet but so far its been better than yesterday. I'm forging ahead....

One other thing I want to mention. With TS, starting a new school and a new grade are HUGE triggers for tics. Many kids with TS report waxing symptoms when school starts. For my son, his tics actually remained very low through the first day of school and all the way up till the 1st week in November. Again, another indicator that this this not the typical garden variety TS.

Ok I just messaged our PED who prescribed the amoxicillin and asked her to call in another script for a more potent abx. Let's see what she says....

Thanks everyone for taking the time to respond with me today. i feel very alone in this and its really nice to have some comforting words of wisdom. xo

Well, we will see. Right now its day 3 and no relief. i guess I need to give it the 10 days and retest for infection, and proceed from there. Praying we get relief. Because 1) we will KNOW its PANDAS and 2) then I can BREATHE

i think that if we can prove PANDAS she will give us 30 days of abx or until the infection clears. Then she also mentioned IVIG.

and just so you know what worse means, he went from: infrequent quiet little tics like sucking his teeth and they would be spaced out over the course of the day. he would go hours without a tic. Now he is yelling "ah" "eh" more than 60 times a minute and he can't go more than 15 minutes without a tic. His speaking voice is also elevated and he is "yelling" when he speaks.

But our Dr. thinks that with TS, an infection can cause the tics to get worse. I'm sorry but this is not just worse, its dramatically worse.

Yes, everything is documented. His tics were barely there since aug and over the past 2 weeks they got worse. Everyday they would increase and increase until we got the positive STREP test. Then we put him on abx and they got even worse! Now they are stable at this very high level.

We see Dr. Tasneem Bhatia here in Atlanta. She has experience with PANDAS and believes in it. We have been seeing her for TS and treating my son holistically. We are GFCF, corn free, low sugar. We killed off yeast on a 6 week protocol of GSE and he also gets a methyl B complex to address poor methylation. he gets 1200mgs of NAC to help him detox and it helps!!! All this stuff got him from SEVERE in May to practically 100% resolved from Aug - Nov! i just don't think Dr. Bhatia is going to be convinced of PANDAS if she does not see rising titres. That is what she mentioned to me when we took his blood.

Well, from what I understand I need to treat it with abx until his swab is clear of STREP, correct?

Right now his teacher said his tics are not that disruptive and no one notices at all. he is doing great in school. no other issues besides the tics (for now). They are willing to work with me and get him what ever he needs. right now no IEP or 504 plan has been suggested (and I asked if it was needed too!). But this was when his tics were barely even there. Now we have to forge through who knows how many weeks of high ticcing and how that will affect him in school - who knows? he knows he is ticcing and he can't stop. its not upsetting him really because he is so young right now.

So if he is not a carrier then that means he should have rising titres, right? That would convince our Dr. that he has PANDAS. Either way I will keep swabbing him until the STREP is cleared.

thought to test him for anything. didn't know anything about PANDAS. I just need to know we are going to get past this. I am living in .

Yes, I am dying right now because how can this kid go to school when he can't stop saying "ah" every single second??? I NEED to figure this out and get relief!!!! My fear is that we waited too long. His tics started back when he was 3 (2+ years ago) but they were so infrequent and then went completely away so we thought it was a phase. These phases would come and go and I only went for a dx when things got CRAZY SEVERE in May. He had 10 different vocals, 10 motors and they all ramped up over a period of 3 weeks. Don't know if he was sick at that time, never thou

He was diagnosed with TS/OCC/ADHD and anxiety in May. his OCD is very mild and with diet changes and addressing methylation and yeast we pretty much resolved all the OCD/ADHD/anxiety. We just deal with the tics now and sensory. I had him almost tic free from Aug till Nov. then over the course of 2 weeks the tics spiked and I decided to get his throat swabbed just to see. BAM it was positive. It coincides with the increase in tics but that does not mean PANDAS, right? The only thing that has me suspicious is that he has had STREP at least 2 other times in his life (he is almost 6) and both those other times he had symptoms. Bad symptoms. This time he was completely asymptomatic. he does not show the typical debilitating OCD/rage/complete personality changes that other PANDAS kids display. But his tics are SEVERE. constant, more than 60 a minute and its a high pitched "ah" at the moment. i fear for him at school. We are on day 3 of abx and after the 10 days are up I will re-test him and ask for another blood test to check titres. What else can I do?

Could he be a strep carrier and have simple TS and not pandas? If so then why are his tics through the roof now and not any other time? Ps. He had a strep test over the summer and it was neg.

We get the results in a week. My dr. Is going by what the NIH says and she wants to see increased Titres in either the ASO or anti D nase B.

I gave him 5mls of ibuprofen as a test to see if there was any affect. After about 30 mins all his tics have subsided. He has a breakthrough "ah" every now and then but the constant, relentless vocals are now way less. Even the breakthrough "ah's" are softer and less intense when he makes them. So I am assuming we are dealing with some inflammation here. huh?