Missmom

Call your doctor and see if he will give you something stronger than amox. I know that is where most pediatricians start when handing out abx. but your son needs more. Beg, plead, do what you have to do until you can find someone else who understands pandas. Also, try ibeuprofin, not Tylenol. I know it is heartbreaking.

Yes, for my son each has gotten worse, and takes longer to get under control. That is why so many of us here are on some sort of either prescription dose or prophylactic dose of long term abx. We don't want our children getting any more infections, etc.... These seem to make things that much worse. Some stay on prophylactic abx. even after full recovery, or ivig or pex just to help keep the immune system in check.

I have thought about that, but sometimes so hard for him to go back to sleep after being woken up. I skipped the probiotic tonight for this reason, but will put one in his lunch tomorrow and hope he takes it at school. I have thought about switching to florestor, but he seems to be doing ok with the culturelle so I am hesitant to change anything.

Just a quick question, I know you are suppose to space probiotics at least two hours away from antibiotics, but if you did not get enough time in between then what exactly is the result? Does the probiotic reduce the effectiveness of the antibiotic, or does the antibiotic reduce the effectiveness of the probiotic, or do they "cancel"each other out? Just curious, it is sometimes hard to get that two hour space, due to all of the activities, schedules, etc......

I think I would go back to what you were giving him before. The drastic increase and change may have stirred something up. I would not risk keeping him on that particular one, there are many more to choose from.

The first two episodes my son experienced went completely into remission with just the standard 10 days of abx. Then the third episode hit and it was much more difficult just to get under control. He is now on long term abx because each time I try to reduce the dose the symptoms start to return. My point is that even if your daughter seems to get back to 100% after abx., you should still make an appt. with a pandas friendly doc and establish her as a patient, just in case she gets sick again and symptoms return. It will make it so much easier for you to recognize symptoms and get started on more abx. So glad she responded so well that is a great sign.

Not sure if your doctor can do this but thinking you can check hep b. titers to see if he is still protected. I am assuming he had hep b vaccine when he was younger and this one at 12 yo would be a booster. He may have enough protection already and then you would not have to worry about the booster.

FYI... Amoxicillin does not work very well, if at all, for a lot of us on this forum. If you don't see any improvement don't assume it is not pandas, it may just be that you need another abx such as augmentin or Zithromax. Amoxicillin did not help my son at all, we did not see improvement until he started augmentin.

Agree, we all just risk getting the flu. We all just got the flu this year and in my pandas son only saw a slight exasperation of symptoms a few days before we knew he had it. We will not do any more vaccines for my pandas son.

Can you please tell me where I could get some of that spry rinse and gum? We would like to schedule a cleaning but am afraid to because my son has been doing so well. He actually wants to get his teeth cleaned-it has been over a year, so any extra layer of protection would be worth a try. Thanks

I agree other than the pandas "specialists" I believe mostly neurologists and immunologists.

If you can get augmentin you should try it. If it is going to work, I would think you should start to see some improvement within about three to four days, with slow but continual improvement after that. If you see absolutely no improvement after a couple of weeks I would discontinue and try something else or maybe steroids. Also do ibeuprofin.

It sounds as if he is flairing from something right now. Is he feeling bad at all. Any signs of illness? Just a thought because with the separation anxiety just "popping up" there must be a reason. My son recently got flu and although he came through it ok, his tics did start to increase 2-3 days before the flu symptoms actually hit. Just keep an eye on that.

I hope your comment reaches her, I agree with you there definitely seems to be more going on. Looking back those were some of my sons first symptoms.

If you could, please expand on what dr. T. said. Did he write the prescriptions for the abilify, and or the z-pack, etc... Did he come up with a treatment plan for you to follow. What about bloodwork? Did he confirm pandas? Just curious why only a z-pack. It sounds like your poor son has been dealing with this for quite some time and will definitely need more than a z-pack to get him on his way. My son had at least two episodes when he was younger which went into complete remission with antibiotics, but then the third episode hit and it was much worse and harder to get under control. Luckily we were on top of it pretty quickly and are currently trying to manage it with long term augmentin. I have no idea how bad he would have become if we had not been able to get it under control early, but I suspect it would have gotten pretty bad, pretty quick. He has tics, anxiety, OCD-germs, sleep issues, hyperactivity, and fidgety. He is also twelve and in seventh grade. The augmentin seems to control all of this, but when I try to reduce the dose it all starts to return. I am scared and nervous about the long term antibiotics, but then I consider the alternative. I know right now you are worried about his schoolwork, but that will all be ok. You just have to focus all of your efforts on getting his symptoms under control for now. It may take long term antibiotics, it may take ivig, or pex, or even a combo of these. Each child is different, but I think your son will be able to catch up on anything and everything once you see his anxiety, OCD start to improve. Our doctor even said most pandas children are extremely intelligent and academically gifted, they just have too much stuff going on in the brain to focus, but once treatment starts to work then they will be fine. It should be easy for them to catch up. So for now just accept what he can do and try to keep it as stress free as possible.

My daughter has had significant blood in urine due to a bladder infection. For us this was not pandas related but did require a good dose of bactrim to get rid of it. I think it was 14 days and strong dose for her size. The infection did not seem painful to her but she is generally not a complainer so it is hard to know how much it really bothered her.

Be sure to also tell dr.t ( if you haven't already). That you and hubby are both strep carriers. You should both be treated just to eliminate any possibility beyond myco p that your son is also reacting to you both. I would want to eliminate any possible triggers and that to me sounds like an easy one to start with. Also I second the suggestion of biaxin, although that can be rough on the stomach so be sure to keep the probiotics coming.

It could be from exposure to someone who is sick or someone who has strep. Is he in school/daycare? I know I am in a different part of the country, but a lot of stuff is circulating around our schools right now. I know you said his issue is myco, but it could not hurt to get him strep tested as well. I would at least finish out all of the zith you have and keep trying to get in touch with dr.t.

Our whole family has passed around the flu these past two weeks. We are taking Tamiflu and regular over the counter meds for symptoms. Have not noticed a major flair yet..... And that is a big yet.... Don't know, just waiting it out. Our neurologist said that we probably would not see a big spike in symptoms with flu, but that is because strep is our most common trigger. I would suspect your son may have more than just common cold if you are seeing a huge spike. My son does not always test positive on those rapid tests. I am not sure I really trust them.

Surfmom, Did you have a good apt. this morning? Did the doctor start you on some kind of treatment plan? Hope it went well for you.

Could you please copy this to the helpful topics thread above. I may want to find this at a later date and that would make it easier to locate. This is some great info. Thanks.

Wow..... You have a lot going on. No wonder you are tired. So glad you are starting to figure things out a bit. I can't comment on your questions but you have provided a lot of great info. When I get some time I will actually sit down and try to comprehend some of it. My son is a ticker as well, we are all dealing with the flu right now, so just waiting to see how we pull through all of this first. Thank you for all the info. I know what you mean when you say you are afraid to keep giving the abx, but also afraid to stop. That has been a constant thought of mine as well.

Agree with everything they said, augmentin worked much better for us and amoxicillin did not help at all... Also definitely stop the Tylenol. You may be able to stop this pretty quickly since you caught it so early. You will just have to be very diligent from now on when she gets an illness, especially strep. Many of us take a low dose prophylactic abx just to try prevent strep. You will learn a lot on this board and so many wonderful people willing to try help. Just one other thought, if your daughter takes singulair for allergies, you might consider stopping that as well. My son took singulair for years, and I now wonder if that contributed to any of this. If you list your state others may be able to help you with doctors, etc.... Good luck

Has his handwriting/Coordination gotten worse does he repeat words? Just a couple other things to look for.