Missmom

I am just really shocked you found an orthodontist who knows anything about pandas... Maybe he could educate some pediatricians....

I take florestor myself because I had an issue with c diff and that is really good at helping keep c diff under control. I am about 5'2". and 115 lbs. I take one in morning and one at night. My son takes culturelle, and I would like to add florestor but don't want to make multiple changes at once so I will wait till his pandas symptoms are under control before adding it to him.

I think florestor is good, but just curious why you are only giving one a day. The adult dosage is two a day.

Is he on 1000mg per day or 1000mg 2x per day?

Since you are new here you should probably start a new thread with any additional relevant information. You will find lots of support and advice on this board. My son has had the blinking tic in the past and it is so frusterating for him because it actually begins to hurt after a while from all the blinking. He also gets headaches sometimes but not daily. You should a full round of bloodwork. There is a lot of info on this board pertaining to which labs need to be done.

We did a stool transplant and my daughter became much worse. I can't understand it as every study I read, like this said it worked great. We asked two doctors and they agreed it was genius. My only guess is that when we had prior stool analysis we found most people have a few kids of strep in their gut and it is fine for them. My guess with DD was that perhaps it increased the amount and she is a PANDAS kiddo.... We did a Great Plains Stool analysis for her which showed the strep. Maybe that should be run for the donor stool to rule that out as well as C-diff and parasites... I still think a stool transplant might help some. Nancy Just wondering how your daughter is doing now. Did you get the implant removed? Just thinking of you and hoping things are getting better.

What types of fillings do you ask for? I know there are white ones just don't know enough to know what to ask for. Thanks for any advice.

Just FYI, my son usually does not test positive on the rapid tests for strep, and is sometimes not symptomatic with strep. So don't put a lot of faith in those rapid tests. Also, he had the flu this past October and his pandas symptoms improved as he was fighting off the virus. I even think some of the improvements continued even after the flu was better. I think it helps to let the immune system if it can handle fighting off some viruses. Hope you figure it all out.

This happens Around our house as well. Lots of worry over germs, and things that seem ridiculous to most of us. It usually just lasts a couple of days. I usually don't change any meds or anything unless it lasts more than a few days or unless the ticcing gets really bad. Hopefully it won't last long.

I am also way more scared of strep than flu. We get the flu almost every year. The only thing that makes me feel better though is knowing that I have plenty of antibiotics ready for the very first signs of strep. My son is also now an established patient with a doctor willing to help. I HATE.... Strep, but at least better armed to fight it now.

Just FYI, not wanting to alarm you but you can have c diff without diarreah. I was recently diagnosed with c diff only because during a colonoscopy the doctor sent off many different labs and c diff was what came back positive. I never had lots of diarreah with it I had more like ibs symptoms, I had not been " normal" for quite a while. I know some labs don't even like to test a solid stool sample for c diff, but had that been the case they would not have tested me. I feel for you and what you are going through. I know it is so hard to know what your daughter needs and not be able to give it to her.

Anybody else use saint johns wart?

Interesting, is that something that was prescribed for him a few years ago, or did you get it over the counter. Would be curious what other types of diseases/conditions this product is being used for. Just going by the name it would seem to be some type of probiotic supplement.

Have you tried a steroid burst? Maybe ivig or pex... I know ivig and pex are not as simple as waving a magic wand and very expensive but maybe steroids would work in the short term. I have also read where many gi doctors can taper Vanco. over a six week period to help finally get rid of c diff. Others on this board have also used Vanco. as a pandas abx so if you could do a taper it may just buy you some time until you figure out your next step. I know probiotics are crucial, but maybe just stick to the ones that are specific to c diff right now such as Sachs. B. and lactobillius gg. I am just trying to get over c diff myself and those are the two I am taking currently.

We don't do any vaccines with pandas son. He caught the flu got on Tamiflu and it did not cause any pandas symptoms. I know this may sound odd but I think after it was all over his overall pandas symptoms improved. I don't know because sometimes we as pandas parent tend to over analyze things, but maybe allowing his immune system to actually fight off the flu on its own actually helped him. I know how it is to constantly second guess what you do, but just do what feels like the best decision at the time.

Thank you for posting. Isn't that the question most of us are asking... How long do we need to keep giving abx?

I am learning a lot about c diff because I was recently diagnosed with it but never had all the typical symptoms of c diff. My symptoms were more like irritable bowel. Anyway, florestor is great for c diff, but culturelle is also great as well. I have been using both just as extra precaution against it. Depending on which doctor you talk to some will say culturelle others will say florestor. At the moment I am doing both. After I start feeling better I may alternate one day florestor and the next culturelle.

Thanks for that summary, It helped me to better understand the theory, and make sense of it all. I have also heard certain antihistamines may also strengthen the bbb. My son is taking Visteril which I believe is helping.

My ds12 got flu and I also had concerns but neurologist said it would be ok. I gave him Tamiflu without any incidences. He did not even flair from the flu. Just watch for any neuro side effects and discontinue if you see anything.

Cool!

I am not sure I remember a mouse model... Did I miss that? Maybe just brain fog.. I don't know.

You could talk to the teachers and talk about medical issues. For example, let's say you are doing a monthly breast exam and you feel a lump in your breast. You immediately call your doctor to get an appointment but they can't fit you in for at least two more weeks... You then start to fixate on the lump and feel it every day wondering if it is growing or will it go away. Then your anxiety grows worse and worse every day until you know for sure if you are going to be ok. It is all you can think about until you have that reassurance Is your health. I think this is the same type of anxiety our children feel everyday, until we give them the reassurance they need. Anyway , just my two cents.

Mom and dad both 29 when ds 12 was born, both parents have slight but manageable OCD. Never formally been diagnosed with anything though. Ds was born full term and no congenital problems that we know of. He did catch a highly resistant strain of strep at 14 months old. The pedi tried three different abx over a month and a shot of penicillin. He later tested negative but it took over a month. I think each subsequent strep infection had mild pandas symptoms, but stopped with abx. and was therefore overlooked until the biggun hit this past march.

How would this explain exposure flairs? We all have children who flair when a sibling or classmate gets sick, even though they may not in fact be sick themselfs. I always believed it was an over anxious immune system ( antibodies) which ramp up due to possible exposure. If there was a chronic infection there I don't see why a child would flair around others.

Yes, my son stays away from all caffeine. He kind of feels it when he eats chocolate or drinks soft drinks with caffeine. It is not too hard for him to avoid. He loves tea too, but we just give him decaf. and he can not tell the difference.