Debbie1

Eileen - I have two PANDAS children who were switched to augmentin less than two weeks ago. Child 1: Daughter, age 12, 95 pounds, on 600 mg twice a day She was previously on prophylactic amoxicillin (400mg/5ml, 1 3/4 tsp once a day) and was symptom free from January to June 2009. She was bumped up to Duricef and Omnicef (both full strength, but not sure of exact dose) during exacerbations over the summer. She had a very hard time getting over 3 summer exposures to strep despite the antibiotics and required 1 month of steroid followed by the switch to augmentin. She is now doing much better. She is still not where I would like her to be, but my husband and I were both positive for strep (him last week, me today) so she has been around strep non stop since starting augmentin. It has also only been 2 weeks and we were told to give it time. But I want to emphasize that she is doing much better (not sure if that is the augmentin or steroid effect though). Child2: Son, age 8, 48 pounds, on 400 mg twice a day He was previously on prophylactic amoxicillin (400/5ml 1 1/4 tsp once a day) and was mostly symptom free for 8 months (until August 2009) when exposed to a cousin with strep. His OCD increased a little, nothing dramatic, but we noticed. Was given 1 round of Duricef (full strength, don't remeber the dose), with no improvement. Was recently switched to augmentin. We haven't rellay seen changes yet execpt that he has not asked me to check him in the bathroom to see if he is clean. However, it has only been two weeks and he was also around my husband and I who are now both positive for strep. We have not yet done IVIG or PEX for either child, but would consider it. At the moment the plan is to keep them on the augmentin for 4 months and then retest titers (Dr. Latimer's recommendation) and then reevaluate. In the meantime, we are considering removing tonsils and I have contacted an immunologist to see if there is anything else we should be doing. The ENT recommended possibly seeing a rheumatologist as well. Let me know if you need more info. How is yor daughter doing? Debbie

Wendy, I'll keep you posted. She is the one who recommended we go see an ENT and consider pulling tonsils. Dr. Trifilletti recommended the same thing when I spoke with him on the phone one day (although we are not his patients). When they heard that we have 2 PANDAS children, they both seemed to feel that we have a strep problem in the house. Can you remind me - are you on full strength antibiotics right now or prophylaxis? Debbie

Thanks everyone for the replies. Just a few follow up questions: My kids are currently on full strength augmentin and will be for the forseeable future, so antibiotics pre-surgery should not be a problem. Who do I speak to regarding IV antibitiocs during surgery and antibiotic plan post surgery (ENT or Dr. L.)? For those of you who did only 10 days of antibiotics after surgery, is that the standard practice? Are you back on long term antibiotics now? I'm waiting to speak to Dr. L. to decide whether to move forward. Thanks again, Debbie

Michele, I had two children on Klonopin at one point. It was a while ago, before we knew we were dealing with PANDAS. We are not sure if helped my daughter at all (she had tics only) - she had symptom free months and then would have an exacerbation even though she was on the medicine, so it may have been doing nothing for her. The doctor kept raising her dose during exacerbations and she starting experiencing side effects (difficulty focusing in school, when doing HW and studying). At that point we had to get her off and we are so glad we did. When my son was on Klonopin (he had tics and OCD) we know it did not help him at all. It also made him impulsive and unable to fall asleep at night. They are both doing MUCH BETTER now that they are off psych meds and on antibiotics. Debbie

Thanks for the quick replies. This was non-group A BHS and it was found on a throat culture.

We had an ENT consult this morning. The doctor will do tonsillectomies if we feel that will be beneficial. The practice has done tonsillectomies on PANDAS patients before and says they have seen positive results. Bottom line is they are leaving it up to us (and Dr. L.) to decide whether to go ahead or not. I know this has been asked before, but can I get some feedback from those of you who have had t&a surgeries? Would you recommend it? Is it always a t&a or sometimes just tonsils? Do you do just the PANDAS child or all of the kids? Thanks for your input. Debbie

In our quest to rid our house of strep, my husband and I had throat cultures and titers run. Dh's titers came back high and his internist sent him to an ID specialist. The ID recultured his throat and found he was positive for beta hemolytic (sp?) strep. The doctor is a bit of a PANDAS skeptic, but is treating him anyway because of our kids' history. Is beta hemolytic strep something that is routinely cultured with throat cultures? Has it been implicated in PANDAS or is that just Group A strep?

Beth, We went to a top pediatric neurologist who misdiagnosed my kids for years. (And apparantly he does believe in PANDAS, just didn't believe my kids fit the profile and never asked if they had strep infections recently). We went to a second neurologist (at a major hospital, head of department), who believed it was PANDAS, but was not willing to treat aggressively enough. We are now on our third neurologist (Dr. L. - thank goodness for her!) Don't let anyone tell you there is no treatment for PANDAS no matter how well respected they are. Debbie

We had our daughter's done when we went to see Dr. L. in MD. However, I did ask our local LabCorp if they could pull and spin the blood for a research study in case we decide to run the numbers on our son. They said that they would do it, provided that they are given instructions on what is needed. They also told me that I would have to send the package to Madeleine Cunnigham myself. They could not send it for me. I would suggest calling ahead or stopping by to make sure they can do it for you correctly. They recently messed up our stool samples (but that's another story!). Best of luck. Debbie

There has been a lot of discussion recently about high dose augmentin. What is considered high dose? My dd (approx. 95 lbs) is on 600mg twice a day. Is this considered high dose for her weight? We are not considering making any changes right now, but was just wondering. Thanks, Debbie

Wow! Such encouraging news! Thanks for posting - please continue to keep us posted! Debbie

Bronxmom, I'm so happy to hear that you are home and all went smoothly. Looking forward to hearing good news from you and everyone else who recently underwent PEX/IVIG. Please keep us posted. mommd and dcmom - I am so glad your kids are showing progress! I love reading about kids that are getting better. Please continue to post updates! Debbie

Judy, I think (someone correct me if I am wrong) that Dr. K. does believe there is a difference if treated before and after puberty. However, Dr. L. does not agree. In our case, she was not recommending IVIG or PEX yet despite my dd's age (her symptoms were relatively mild compared to others) and felt that if we needed it down the line, it would still be as effective. At this point we have used steroids and abx. If she thought we were ready for IVIG or PEX right now, I would jump at the opportunity. But it is comforting to know that we are not working against the clock. Having 2 children with PANDAS (ages 8 and 12), I can say that my younger one (who was more severe) seems to recover faster than my older one. That does not mean the older one will not recover, but that healing may take longer. After a steroid burst in December 2008, my dd (then 11) got back to 100%. We (and Dr. L.) have the same expectations from her most recent exacerbation. Just keep in mind that healing the brain takes time and it may take longer with an older child. I'm glad you are on the right path. Debbie

Dr. L. told us at our first visit with her that she does not believe in the "puberty cut off". My dd is 12 so it was a big concern for us as well. I hope this puts your mind at ease a bit.

Eileen - I have seen a few people here recommend Dr. Denis Bouboulis in Darien, CT. Not sure if this is farther than you are willing to travel. We have not seen him (or any immunologist yet). I do not have his contact info but perhaps someone who uses him can post. Glad to hear your daughter is showing progress! Debbie

The bloodwork you need is ASO (Antistreptolysin O) and Anti-DNase B Strep Antibodies. The first time I went to my ped asking for cultures and bloodwork, I was expecting an "I don't think this is necessary" response. He didn't give me a problem. Your ped should be fine with running the tests especially since you have a specialist recommending them.

My PANDAS ds has primarily OCD behaviors (although mild at the moment) and PANDAS dd twirls her hair constantly, which I was only recently told is an OCD behavior. They both had vocal tics in prior episodes, but not in this one. Dr. L. ordered the stool cultures. She is sending us to the ENT to take a good look at the tonsils for strep (and perhaps the sinuses?). She wants us to consider removing tonsils.

erica, My non-PANDAS son has been through a whole GI work-up (including extensive bloodwork and endoscopy). Bloodwork showed high eosinophil count and high strep titers, endoscopy found nothing. When I suggested perhaps the stomach aches were strep related, doctors looked at me like I was crazy. Dr. L. is the first doctor to suggest that the stomach aches are strep related (and I didn't even bring it up this time around!) She suspects he might be the one harboring strep and reinfecting the others. He just started the augmentin on Friday night. I am watching closely to see if his stomach aches disappear (he hasn't had any since Friday night so we are off to a good start!) Have you tested your daughter for strep recently? You may want to consider getting her titers, a stool culture and seeing an ENT. Debbie

Hi Elizabeth, She does feel that my children are mild PANDAS cases compared to others she has seen. My dd is just finishing her second round of steroids so her treatment has not been limited to antibiotics alone. Dr. L. has not ruled out more aggressive treatments (IVIG or PEX) but does not feel they are necessary for us yet. The more immediate problem she wants to address is that 4 out of five of us tested have significantly elevated titers. My PANDAS children's symptoms seem to correlate with the rise and fall of titers. However, even when the titers fall, they have not been in the normal range. She feels that we have a carrier or are passing a strep infection back and forth and wants to treat everyone at the same time to eliminate the strep. Once we have done that and given them some time to heal, we will reevaluate how they are doing. She wants to see us back in 3 to 4 months. My children do have a history of responding well to antibiotic treatment. They have had an amazing recovery in the last year (thank you to everyone here!), but relapsed recently after a sleepover with a cousin with strep. The relapse is no where near as severe as prior episodes. We are hopeful that eliminating the strep and giving them time to heal will be enough for them. If not, we may need to get more aggressive. She did not mention anything about antibiotics modulating the immune system so I am not sure of her opinion on that. They will be on full strenth antibiotics until we see her again and then she will reevaluate. Not sure at this point what the long term will be. She did recommend that we take everyone to an ENT (we are going next week) and that we have stool cultures tested for strep. Let me know if I can answer any more questions for you. Debbie

memom, I would definitely put a call into the doctor. We have had minimal side effects from the prednisone (this is our second time using it). Puffy cheeks and increased appetite, but that's really it. They did both disappear the first time around after finishing the steroid, although I do remember being warned by my ped that the side effects come quickly and disappear more slowly. We did encounter problems on the prednisone this time around each time we dropped the dose. We dropped each Tuesday and by Thursday her symptoms would ramp up. They would settle down over the next few days and by Sunday we saw improvement again. This happened every week on the steroid. Overall, she is much better than when she started the prednisone despite the setbacks. Dr. L. reminded us this week that healing the brain takes time. She told us to think of it like a concussion.

My non-PANDAS child had high eosinophils (and very high strep titers). The others were not tested.

Faith, PANDAS dd (12) is on 600 ml twice a day. She is at the end of a one month steroid course prescribed by Dr. L. Before starting the steroid she had very bothersome eye and neck tics. The eye tics are now gone. The neck tics are much better than they were (reduced frequency and severity) but not totally gone. In late August 2009, ASO was 371 (down from 620) but antiDNAse B was back up to 960 (where it was when we first tested almost 1 year ago - it had come way down to 480 over a period of several months and then shot back up after strep exposure this summer). Non-PANDAS ds (10) is on 400 ml twice a day. He has had ongoing stomach aches since a strep infection in 9/08. He has had three strep infections in the last year. In April 2009, ASO was 680, AntiDNAse B was 1360. PANDAS ds (8) is on 400 ml twice a day. Recent symptoms since strep exposure over the summer have been an increase in OCD and an occassional tic. He had mild chorea on exam. He is very mild right now and others would not notice what is going on. We know because he has been through much worse and then fully recovered. Debbie

We took our PANDAS son to see Dr. Latimer last week. (We were there a few weeks earlier with our PANDAS daughter.) We had a wonderful visit with her and I am so glad we went. We were able to update her on our dd (who was 3 wks into steroid treatment) and discuss her Cam Kinase level (137 - she considered this pretty high). We then went on to discuss our son. She is really the first doctor we have found who has looked at the whole picture. She believes we have a strep problem in the house (based on titer results of all family members and stomach issues of non-PANDAS child) and that the prophylactic amoxicillin that my PANDAS children are on isn't doing its job. She put all of my children (non-PANDAS child included) on treatment doses of Augmentin for the next 3-4 months until we retest titers and see her again. I asked her what we would do if they have exacerbations while on the Augmentin. She does not expect them to, but if they do we might consider IVIG/PEX. I left so happy (and thankful) that she is able to guide us. With every other doctor, I felt that I had to guide them. I know several of you have had trouble getting in touch with her. I would highly recommend going to see her if you are able. She was kind, compassionate and knowledgeable and unquestionably worth the 9 hour round trip.

Hi Eileen, I am glad that you are home and all is well. I have been thinking of you this week and wondering how it went. Looking forward to an update. Debbie

We are currently on our second round of steroids. Our first was in December 2008. The first time we did a very high dose for a week. The second time we used Dr. Latimer's protocol - a lower dose over 1 month. Both times we consulted with our pediatrician and an endocrinologist before starting the steroid. They both agreed that the dose was safe for the peroid of time we were using it. Dr. L. and our ped both said that if we needed to use the steroid every six months to control the automimmune response that it would be safe to do so. (Although I really hope we won't need to!) We are happy we gave it a try - she got back to 100% the first time and we have seen significant improvement in our second round (we are not finished yet).