Dakri

I guess I feel like we almost do have our child back. He was coughing EXCESSIVELY for weeks and weeks and now it is so much better since he has been on the amoxicillin. It's not 100% gone but maybe 85% gone. We are going to see a different dr next week - one recommended by pedgem (I think that is her name on here) down in Phx which is only 2 hrs away. I will feel so much better discussing all of this with a ped that is educated on this and currently treating other patients with it. Thanks for all of your expertise! Dakri

We did decide to cancel our appt up here in Prescott Valley with our ped and go see your dr in W. Phx next week. Meanwhile, I had the nurse fax me a copy of the lab results for the bloodwork he had done and the "Streptolysin" number is 324. Are you able to interpret that for me? Is this the titer level one? What is a normal range? I feel so clueless! :-) Thank you so much for all your replies and offering your expertise to us newbies. Dakri

What is the typical length of the initial antibiotic treatment? How do we know when to stop? I just realized you are the one who gave me the dr name in W. Phx. I have an appt with him on 1/12 and am hesitating to cancel it until I see if my ped up here in Prescott Valley is taking an aggressive enough approach. Trying to evaluate that. I just worry that if we stop after 2 wks of amoxicillin, the antibodies might still be high enough they are damaging his brain. Is this a legitimate concern? Or am I suppose to just be happy the symptoms are going away? I'm so overwhelmed with all of this and don't feel like I have a clear understanding of it all yet. I would feel so much better if I trusted that my ped knew what she was doing. Maybe she does. I'm trying to figure that out by questioning all of you. :-) Thanks so much! Dakri

What is the typical length of the initial antibiotic treatment? How do we know when to stop?

So help me understand how we know that the strep antibodies are gone from the body? Is there any way to know that? I read somewhere that if the antibodies stay in the body they are basically continuously damaging the brain? Do we just assume once the symptoms are better that the antibodies are gone and no longer damaging the brain? His coughing tic is MUCH better now that he is on the amoxycillin but he still coughs intermittently. Before the onset of this tic after being sick in Oct (he probably had strep then), he never had a coughing tic so I keep waiting for it to completely disappear. And my last question would be........what amt of time is typical for the antibiotics? Several replies to my post said 2 weeks is usually not enough. So how long is enough in general? What should I be pushing my ped to do? Other than give me another type of antibiotic? Thank you! Dakri

I have been reading a lot on this forum over the past month or so and basically diagnosed my son with PANDAS myself - with all of your help! My son was diagnosed TS when he was 7 - he is 9 now. Long story short he got sick in Oct and has not quit coughing since. It became a tic clearly. I convinced our ped to do a strep test a couple weeks ago and she sent us for labwork and it confirmed strep in his body. So she has had him on amoxicillin for 2 weeks. Today is last dose. She is new to the PANDAS thing and I"m not sure how much she has reseached as I keep getting her direction from a nurse that calls me. I suspect they don't know alot about this. I told the nurse last week we would need to do labwork again to ensure the strep is gone. The nurse called today and said the dr indicated the antibodies are in the body for a long time and the strep test would not be accurate and 2 weeks on antibiotics should have killed the strep. All my research tells me this is not correct. Please someone confirm for me what the next steps would be so I can convince this ped to do more. I appreciate all advice and direction as I am very new to this! Thanks! Dakri

Hello - My 9 year old son was diagnosed TS 2 years ago. He got sick while on vacation 2 1/2 months ago and has been coughing/clearing throat ever since - a HUGE increase in tics. The girl in the news (12,000 coughs a day) recently caught my attention and made me start researching PANDAS. My ped had heard of it but wasn't familiar with treatment so did some research and started him on Amoxicillin 2 days ago - for 14 days. We got back lab work today showing strep present in his body (I am uncertain what specific test was done but can tell you blood was drawn). So with no strep symptoms, a positive lab work test and having a huge increase in tics since he was sick........................do I have anyone who can say we've solved this mystery and this is for sure PANDAS? My question specifically is.....................I read posts about lots of other antibiotics but haven't seen anything about amoxicillin. Are we on the right drug or not? Will there be another lab test soon to see if he clears? I'm assuming that is the next step? Thank you for any advice! Dakri

Your post really caught my attention! My son has TS and we just had a positive strep test today confirming my suspicion that we are dealing with PANDAS the past few months. My son has had NAET treatment for food allergies and I really believe that it worked. I am so happy to read on here that there is a vial for Strep. WOW! That gives me a lot of hope. It is expensive but worth it in the long run. Good luck to you! Please post on here if you try the NAET for strep!

Thank you! His tics have been CRAZY for 8 weeks so I'm hoping the pediatrician will do the strep culture. We have an appt on Friday. Gosh there is a little hope inside of me that maybe this has been the cause of anxiety/tics all along for years perhaps. So interesting. GOTCHA! I completely agree with being very proactive bordering on pushy with the drs. They are so passive when it comes to most things. So with the strep test it will be either positive or negative, right? And if postive, we may be dealing with PANDAS. From what I read, even if it is negative, it could still be PANDAS. What is the next step if it is Neg?

Thank you! His tics have been CRAZY for 8 weeks so I'm hoping the pediatrician will do the strep culture. We have an appt on Friday. Gosh there is a little hope inside of me that maybe this has been the cause of anxiety/tics all along for years perhaps. So interesting.

No, just really started learning about PANDAS this week. I am hoping when we see the pediatrician on Friday that she will work with me no this and do a strep test for starters.

Hello and welcome. Tourettes, tics, adhd, anxiety... all things we see here related to PANDAS. Have you noticed whether his symptoms get better while he is being treated for anything with antibiotics? Many PANDAS kids don't have typical strep symptoms so I'd see this as a flag too. Would your doctor be willing to do a trial of antibiotics to see if it would clear up the cough and in that way have a test to see if other things improved? Does he have any other symptoms, OCS type behavior? Good luck to you guys. I'm sure there will be others posting here with much more helpful info for you. Maybe there is a doc within driving distance to you who knows about PANDAS. Susan Thank you for your quick reply, Susan! Josh has had OCD type behavior since he was in preschool - so for like 6 years. His drs have not officially labeled him OCD but they always note on the chart "OCD like tendencies". He has been obsessed with Pokemon for 5 years and now is very much obsessing over hockey. He doesn't do any of the typical OCD things like hand washing or counting things though. I can't say I have noticed the symptoms clearing up with he has been on antibiotics. Maybe I just haven't noticed - not too observant I guess. How would I go about finding a dr who is knowledgeable on PANDAS? We are 2 hours from Phoenix so I imagine there has to be someone down there. Is there a list some where? thank you! Dakri

Hi! Where do I begin? My son was diagnosed at age 7 with tourette's - he is now 9. He also has ADHD and Anxiety. We started medicating the tics and anxiety in May 2009 and my son has been extremely stable and we rarely see tics. In October he got sick with a bad cough and fever for a couple of days and he has continued to cough for 8 weeks now. The pediatrician thinks maybe asthma causing the coughing but he never wheezes and has no trouble breathing ever. We have tried a couple of inhalers (albuterol and xoponex) over past few weeks and that was a NIGHTMARE beyond belief. It made his tics and anxiety go crazy and he was having panic attacks. I do think that the majority of the coughing going on now is a habit or a tic and not really related to asthma. It is so hard to figure this all out. I saw the news story about the girl with PANDA who sneezes nonstop and wondered if that could be what happened with my son. Maybe he had strep in October and we didn't know and that triggered the onset of way worse tics and this nonstop coughing????? He has tended to be the kid over the years who gets strep but never has a sore throat so perhaps he had strep in Oct and we missed it? Today we saw the psychiatrist and she increased the dosage of Tenex for the tics so we'll see if this improves things. Any suggestions on how to determine if this is PANDAS? I don't know if to bring this up Fri (we have an asthma treatment follow up) with his pediatrician. We live in a small town in AZ and I have a feeling she probably knows nothing about this. Is it possible that his tourette's could be caused by PANDAS? Although he was diagnosed at age 7, we can look back to age 3 and see that he had tics throughout the years and they just weren't frequent enough to know it was anything more than bad habits at the time. I would love any advice or direction! THank you so very much. Dakri