LMama

Sending hope to new parents out there struggling. There is hope. My son is better now. He’s almost 17.

Wow. That is incredible. How often does he take the abx, and does it cause any stomach problems? Also...So is it safe to say that with a score of 137 he DOES have PANDAS and not tourettes or child onset ocd? Our pediatrician does not seem to know a lot about PANDAS, but has been open to learning. He takes augmentin twice a day. He also takes two probiotics a day. No stomach issues. He didn't have any tourettes symptoms, only OCD. My other son has PANDAS and that is why is why diagnosed so early. I am 100% sure it was PANDAS. He has no more symptoms. I don't believe in child onset ocd after a strep infection. Especially when it is acute. I think your child does have PANDAS. I wouldn't take any chances. Ask for the tapered steroid and antibiotics. I appreciate everyone's input so very much. This forum has always been so informative, and you are all so supportive. Thank you! So is there a resource somewhere that has a treatment protocol that I can give to my pediatrician, or should I just tell them what I am learning here?

Wow. That is incredible. How often does he take the abx, and does it cause any stomach problems? Also...So is it safe to say that with a score of 137 he DOES have PANDAS and not tourettes or child onset ocd? Our pediatrician does not seem to know a lot about PANDAS, but has been open to learning.

Thanks for your perspective. We just don't know what to do, but that is EXACTLY what my worries have been... that these exacerbations will get worse with time. I am certainly open to trying to pursue the route of prophelactic abx. I hope that with the results of this test, perhaps our pediatrician will be open to this. Thanks again.

Hello. My 6 year old son just recently had a mild exacerbation of vocal and motor tics and mild ocd after an ear infection (no strep). He was on a 10 day course of abx, and currently has very mild throat clearing and hopping. Symptoms are almost resolved. His symptoms are thankfully very mild. We sent his blood in to Dr. Cunningham. His results just came back. His level was 137. They told us that 91 is normal, and that 120 and up is positive. My son's symptoms have been super mild on every occurrence except for the first episode when he was about 4 and a half. His symptoms also always seem to be responsive to antibiotics. Does anyone know what I can take away from that 137? Can I take that to his pediatrician as support for the PANDAS diagnosis? His pediatrician has begun to suggest that perhaos we are dealing more with either tourettes or child onset ocd. Also, should this be support that he needs a longer course of antibiotics? He had 10 days of amoxicillan. Any answers are greatly appreciated. Thank you. I always find this forum to be so supportive.

Hi Faith, Let me see. Yes, he started with the mild cold, and within days we started seeing some slight ocd type behavior (the hopping over door entrances and stuff). Usually we see tics, but this time, it was more of an anxiety ridden hopping behavior. He also has mentioned needing to even himself up by touching things a certain way. As I said, his symptoms are so very mild. My husband and I are the only ones who really see it at this point. (He has had one very severe episode...the first one we saw in May 2008). So anyway, it's odd, literally within a day or two of starting abx he seems to improve. I mean, we still are seeing some hopping and a little of the evening out stuff, but it is almost gone. As for strep, he has only tested positive once, in May 2008, and about 2 months later his titers (blood) were in the 300's if I remember correctly. Other times, he has ALWAYS tested negative. The pediatricians here at least believe PANDAS is a possible diagnosis, so they are good about giving us these 10 day prescriptions, but this last time, the dr. suggested that since we have not seen a positive strep test, and since the last time we were in was November (not long ago), maybe it's tourettes or onset ocd. Also, his strep symptom from that May2008 episode: slight sore throat with no fever that we would have dismissed had it not been for the fact that I was due to have my second child that week, and was concerned about the baby getting sick. I hope you can find an answer for your son too. Let me know how you are doing!

They can do a nasal swab to check for strep in sinuses. I never knew that. It's frustrating that the doctors have never suggested this. Thanks for the info!

Thank you all for your responses. I am beginning to realize that these recurring "10 day prescriptions" for abx are not enough. We keep coming back to symptoms, albeit we have long periods in between. Yes, it very well may be a sinus infection. You're right! And I have read here that strep hides in the sinuses as well. I have him on 10 days of abx now, and he is much better. Still some very mild ocd there...evening out , some hopping over doorways and entrances, etc. but for the most part, it is not "bothering" him as much anymore, and it is not as noticeable to anyone other than myself and husband. He has even gone to the bathroom by himself tonight, which is HUGE because he is fearful at night. I am going to read Beth Maloney's book and pull together some of the many resources here, and take it to my son's dr. I think he needs to be on a long term abx for a while to see if that helps. I can't thank you enough all of you for responding to my questions. Sometimes I feel as though I have a handle on this PANDAS stuff and then many times I feel as though I am going crazy. Also, I know that my son's symptoms are mild in comparison to many of the stories I see here, so sometimes I wonder if I am over-reacting. But then I took my son into the dr. today and even the dr. himself said that he could SEE the marked improvement since my son startes abx a few days ago. And that's what we see every time...symptoms come back, we go to the dr., get abx, symptoms go away for a while. Symptoms come back...go to the dr., get on abx, etc. While I KNOW that we are blessed that it has been so mild thus far, I still live in fear of seeing another exacerbation as we saw last May 2008. Anyway, thank you all for your support. I will let you know once I can get him on a longer term of abx.

I agree. And I know this isn't the popular opinion here, but I like the name PANDAS because to me, for my 6 year old son, it is a name that is familiar and safe. My little PANDAS boy. It is affectionate, and when he flares up, I just look at my sweet boy and somehow the name PANDAS conjures up an image that is sweet and safe... even though he is struggling so much. I don't know how to explain it. I have felt such intense sadness when he was at his worst. He doesn't know what he has yet, but he has heard me talk about PANDAS, and it is a name that is safe and familiar to him, so he doesn't think anything of it. Maybe he just thinks I am talking about the animal. Anyway, I don't like the psychiatric part either though.

That is so interesting!

Where about in Iowa do you live? So few midwest posts. We live near Des Moines. A sharp young psychiatrist, Dr. Sasha Khosravi connected our son's "array of dots" and suspected PANDAS. He referred us on to a Dr Stephen Elliot at Blank Children's. After a year of Dr. Eliott's insistence that penicillin WILL WORK (it wasn't-not even Bicillin injections), we ended up in Chicago with Dr. K. I do know that Dr. Khosravi and Dr. K have visited at length not too long ago--I hope our son can "help" trx in Iowa. Let us know how the other two contacts work out. Dawn I am sorry. I am not in Iowa. I was trying to inquire about the location of a Dr. T that I read about on this site, out of curiosity if it is Dr. T. Murphey. I don't know how I posted on this thread. I am sorry. I am new to this kind of forum. I hope your son is doing better soon. It is so nice to have a forum like this to talk with other families experiencing similar things. I have felt crazy many times during all of this, wondering is it PANDAS, or is it tourettes/ocd??? What is this? So please keep me upated on how your son is doing!

Your comments are of great help! Thank you. I hope your son continues to improve!

There are several threads here about what materials you can take to your doctor regarding PANDAS, and what testing can help support your contention that, irrespective of a positive strep test (or not), your child may be experiencing PANDAS. From what you've described, it does sound like PANDAS to me, especially since you've seen both OCD and TS behaviors during exacerbations. Although it is not at all considered to be a "definitive" test, we were able to convince our regular pediatrician to go with a long-term abx treatment with an ASO titer test that revealed strep titer levels about double the normal range; this test was suggested to me by Beth Maloney, author of "Saving Sammy." Our son has always been asymptomatic for strep, and each and every throat culture always comes back negative, but the ASO titer blood test demonstrated that he had a recent exposure; that was enough to bring our ped on board. I also took her a copy of "Saving Sammy" and asked her to read it. The OCD behaviors you're describing your son as displaying now sound very much like what my DS12 goes through in terms of contamination (the chair being dirty), and what Sammy Maloney in the book displayed in terms of hopping lines in doorways, etc. As for whether or not your abx dosage is adequate, it seems to vary greatly with all kids and would depend to some extent on his size (weight); also, strains of strep vary across the country, and it appears some are more responsive to one abx as opposed to another. And some exacerbations seem to come as a result of exposure to non-strep triggers whether flu, cold, oral issues (tooth pulling or molar cutting), etc., and what abx helps in those instances appears to vary, also. We've had success with Augmentin, while others have had success on Azith. It seems to me the thru-thread, however, is that the heftier abx tend to work more consistently than the "lighter" ones. Good luck! There's lot of information here, lots of experiences (and lots of opinions ). Thank you for the info! I am looking over some of the "helpful threads" now to see what I can understand and take to the dr. They agreed to do the blood draw. Is amoxicillin a "lighter one" as you mentioned? Also, for your DS12, do her symptoms go away ever, or are they always there? As for my son's weight and the dosage, I think he is at about 55 pounds. Thanks again for the response. It's so nice to have a forum of moms here to talk with.

Except that Dr. Cunningham's lab is closed for the holidays! Thank you for your response! I emailed them last night, and Kathy emailed me back and said that as long as we have the blood spun and the serum pulled that we can freeze it until the 4th when they return.

Ok, so I am feeling confused. The first time we really saw severe symptoms (multiple motor and vocal tics, and what seemed like very slight OCD type behavior) was after a strep infection (within a month of strep). He was on abx for 10 days, and then it took about 6 months or more for the behaviors to go away. Since then, we have seen some very slight OCD type behaviors emerge a couple of times, but we have been able to treat with antibiotics, and it ALWAYS seemed to resolve with the abx. So we really thought it was PANDAS. On a regular basis, his symptoms are pretty much not there. I know we are blessed to have haaad his symptoms be so mild thus far. But this time around, he doesn't have a sore throat, and the "cold" he has is really minor. No fever or anything. He had a little bit of a stuffed nose and that's about it. And with the holidays, yes, it has been very "off" our normal routine, so stress is very likely a factor here. Right now, I would say that his symptoms are still relatively mild in that it is not impacting his entire life. He is still able to play and be a happy boy. But he is very concerned/anxious with certain things right now. He says that "Mr. Worry" is back. He couldn't sit on his chair at the dinner table tonight because it was "dirty". He has to hop over lines and and as he enters rooms, etc. The tics are not present (whereas with our first severe complication, it was more tics than ocd). This time around it's more of an ocd thing. So I am confused though. Is it PANDAS or is it TOURETTES or is it OCD with Tourettes? How are these disorders different? The dr. today said that he would give abx but that perhaps we should start considering behavioral therapy b/c maybe it is underlying OCD/Tourettes. His dr. is very open to the PANDAS diagnosis, but I don;t think he knows a lot about it. He also suggested a referral to the Infectious Disease Specialist. We were able to get the dr. to prescribe a 10 day treatment even though he had no symptoms of strep. He is on Amoxicillin 400 mg/5ml. The rx says "take 2 teaspoonfuls (10mls) by mouth 2 times a day for 10 days." Is this an adequate dosage? Do you all think he should be on a longer term dosage? How can I get his dr. on board with this? Are there resources out there that I could print out and show the dr. to support the idea that maybe it IS PANDAS and we should try a long term abx? I am just not sure where to go here. We have been incontact with Dr. Cunningham, and we have the kit for the blood draw. We were waiting for an exacerbation. I guess now's a good time... I guess in a way I am worried because up until now, we really thought it was PANDAS, but now we are starting to worry that it is Tourettes or OCD. What are your thoughts? Thanks for all of your replies. I really appreciate all of your wisdom.