NMom

Thank you! It does help. I'm just so anxious about what it will be like when he starts being exposed to strep and other infections. Trying to remind myself to take it one day at a time! Thank you for your story though - will help me talk to the school this next week.

Thank you - this does really help! I'm trying to engage those people right now but not getting a lot of response. I'm sure people are enjoying their last week of summer vacation. Just out of curiosity...how has your son done with infections while no long-term antibiotics? I'm terrified of school right now. When he is exposed do you see an explosion of symptoms again or just minor warning signs? When that happens you mentioned you change dosages...do you go back to high-dose antibiotics for 10 days or longer? Have you ever done IVIG, PEX or other treatments like steriods or have antibiotics been sufficient? Sorry for all the questions! I'm just a little concerned about the near future and how to manage whatever comes our way!!

My son was diagnosed with PANDAS about a month ago. We actually started treatment before that (thanks to an open-minded pediatrician) and he is responding very well to antibiotics. We saw Dr. Latimer in July to confirm the diagnosis and she changed his antibiotics from high-dose augmentin to lower dose (for long-term) zithromax. We actually just started the zithro today so am not sure if he'll be able to sustain on it. School is starting in two weeks and I'm terrified about what's going to happen the first time he's exposed to infection. I want to talk to the school prior and am trying to set up meetings but I'm not actually even sure what to tell them or ask for. I believe that I cannot ask for 504 status unless he needs to be accomodated right now. For those of you that have worked with your schools successfully...did you bring letters from the doctor or others? How did you describe PANDAS and get the school admin to work with you? On a separate (but related) note...I have had such issues getting Dr. Latimer's office to work with us post-visit. We traveled to see her in July and loved her personally but have been unable to get her office to send anything to my pediatrican (and I call almost daily!). The suggestion has been that we just call Dr. Latimer if we see symptoms arise and she will prescribe...meaning we don't really need a local pediatrician. But I don't know what happens when he has other issues that require him to be seen in person. For those of you that see Dr. Latimer...how do you work with her and do you have local pediatrician that is onboard with the PANDAS diagnosis?

Well said!

I agree with you ajcire. Her approach may be a bit heavy-handed but I'm always going to be grateful that she was motivated enough to write the book and raise awareness. Otherwise my child would probably be on an SSRI and not getting any better. I also have a lot of respect for anyone fighting this battle - particularly a single-mother of three. I have a husband and only one child and we barely make it through some days. I was at the conference and attended all the PANDAS presentations as well as the dinner. It was very frustrating to realize that even the doctors most familiar with PANDAS do not agree on how to treat. And I certainly don't want to hear that IVIG is the only approach when there are cases where long-term antibiotics worked. But I respect Dr. K and his experience a lot. I hope and pray that everyone dealing with this disease finds the right treatment for their child and that the doctors are able to create some definite guidelines to make diagnosis and treatment easier. Just my two cents...

I attended his presenation and he absolutely did say that. He said he'd only seen one patient that responded long-term to antibiotics and that, in his experience, ALL patients become non-responders to antibiotics.

Jodie - I love all the information so thank you! I'm so glad your son responded to the antibiotics so quickly. I was hoping for that too. How did you find the elevated Mycoplasma - is that a blood test? I'm thinking that maybe I need to ask for it if the dr. today wants to draw blood. I'm not familiar with ESR or sed rate but I know that my son's ferritin was 14 when tested which I've been told is very low. I'm glad you told me that iron supplements are not good for PANDAS kids. How do you increase the iron naturally through diet..what types of foods? I've got a picky eater so am concerned about that. I've also heard that low ferritin can be linked to sleep disorders...which can affect neurotransmitters in the brain and make ocd/tics worse. A sleep study may be our next step but given the high strep titers I'm concerned about treating anything for fear it makes something else worse!!

I'm wondering about whether he was exposed as well. He started a summer camp that I was really considering not allowing...but hate to start limiting his activities. But now I'm wondering if being with a bunch of other kids might have exposed him again. I don't really expect the neurologist to be helpful about the possible link to PANDAS. I just want him to rule out other things. I've had consults with the Mayo clinic (that doctor mentioned the possibility of a brain tumor!!) and Dr. Lin (Irvine). Dr. Lin is convinced that this is PANDAS. I have a face-to-face with Dr. Latimer in July. Meanwhile we are on 900 mg of Augmentin/2 times per day. Seeing very little change in the 6 days we've been on it. But am going to keep the faith and stay with the antibiotics for now. We also started ERP therapy for the OCD behavior which might be making it a little worse right now since we are so focused on all the things he's doing. Who knows...I'm pretty sure I'm going crazy trying to reason this out. PANDAS is a horrible, horrible disease..but I'm not sure I could handle a brain tumor.

I am the mom of a six-year old boy who over the last six weeks has developed OCD behavior, tics, mood swings, etc. All of that started about eight days after being diagnoised with a strep infection. He actually told me that something was wrong - that he suddenly felt the need to touch everything evenly. I immediately thought of PANDAS (thanks to all of you that have spent so much time getting the word out) and convinced my ped to run bloodwork. His dNase and ASO were very elevated and after quite a bit of convincing, my ped agreed to a 'trial run' of three months of Augmentin. From start to finish that process took about 5 weeks! I thought I was seeing some progress after the four-five days of abx but yesterday and today were not good. Is this normal and how long do I wait before we give up on abx and try something else??? We are also scheduled to see a pediatric neurologist tomorrow who I'm sure will tell me that there is no such thing as PANDAS and that my son needs to be on an SSRI (heard it all before). If he wants to draw blood again, I'd like to request that we include the titers and any other key tests. Are there other things that I should have my son tested for? So far, we've done titers, glucose, liver profile, cbc, ceruplasmin, thryoxine, EBV panel, lead, crp, mono, lyme disease, vitamin d and ferritin. The ferritin was very low and titers were very high..the rest was normal. Any information on other tests would be very appreciated!