memom

Gee, if that is true, I wonder if it has any influence on getting IVIG for OCD Pandas. Probably not. I don't yet know about our BCBS PPO and PEX or IVIG. Sorry. Ellie

We had good results with the month of steroids but had return of symptoms with taper off. We are trying another blast starting tomorrow with a change in antibiotic. My daughter also noticed mental clarity, decreased ocd and overall feeling more normal and less "swollen brain". Weight gain and puffy cheeks went away once she was off the steriods. Ellie

I am so glad you are seeing some results. What a nightmare. We are all thinking of you during this difficult part of the journey. Keep us updated. Ellie

I wish you luck. Keep us posted. All reports of good news helps those of us who are still struggling to find the right path for this nightmare condition. Ellie

Amazing article. Home run. Ellie

I think you have nothing to lose with trying an antibiotic full strength for a month till you get to the states. I would consider the two found most often on this board as a good place to start. Augmentin XR twice daily if no penicillin allergy (and if he can swallow large pills) or Azythromycin (also known as Zithromax) 500mg daily (one pill daily). I would also call now to make an appointment with a physician in the states that works with Pandas that you could seen ASAP once the plane lands. You are not crazy. Ellie

Folks here on this forum have taken it many different ways. Anywhere from 500mg twice daily, to 875mg twice daily to 1000mg twice daily to Augmentin XR twice daily (that is also 1000mg but timed release and a different ratio of meds in it). The Saving Sammy dose is XR twice daily (the strongest dose, he was about 120 lbs). My daughter started on 500 twice daily for a month, saw no appreciable change, went up to 875mg twice daily, not sure if it is helping, would like to try a month on XR. If that is not enough I would consider Azithromycin 500 daily (we live on the East coast where there is reported a form of resistant strep). Ellie

Yes. I also noticed a return to symptoms towards the end of the month of steroids. Consider the burst part over once she is in the last 2 weeks of the steroid regimn. My dd17 got what we think was a mild case of H1N1 in the last week of steroids and she back slid as though she had never taken the steroids. She has also ramped up symptoms when a normal cold. Ellie

Alex who sometimes posts mentioned that the XR is actually different in how it keeps the blood levels up more consistantly with a rapid release portion of the pill and then the sustained release portion. Can't break these in half. There may also be a different level of the second med in the Augmentin (don't remember how to spell the Clavi.....). Ellie

I haven't noticed that with my dd17. I have however noticed that stress (no shortage of that as a struggling senior in HS) is a real trigger for worsening symptoms as are allergies, any bacterial or viral illness. Ellie

Nice outline. What I most appreciate is the idea of a somewhat standardized approach to diagnosis and a somewhat standardized treatment strategy. Since I happened upon our journey, it has been somewhat a hit or miss strategy. Algorithms are helpful for both parents and care providers who though want to help, have no clue on how to proceed. Since the few of you who have dealt with Pandas treatment in any significant amount are often far distances from the children suffering, the beginning work up and early treatment strategies could be begun by non experts (Pediatricians for example). If not full recovery by end of steriod burst, abx, CBT and or psych meds, then go to an expert about need for IVIG/PEX. Keep up the good work. So many families are struggling and are despirate to get their kids back. Ellie

Yes. Thank you. I think my eyes are crossing after reading every post from April to now. Even then, I missed it! Thanks again. Ellie

I thought I remembered the same thing with someone having a bad reaction but couldn't find it when I reviewed all the posts. I was hoping others would have more experience. I will give you info when I review it on Tuesday. Ellie

No doubt

We just got our immunology bloodwork back for dd17Pandas. Her IGE is 782 (mean 13.2, +2 standard deviations 127. Her eosinophils also elevated. Though the immunologist hasn't reviewed the results, I looked over the others and doubt she would be considered low on any of the other testing (never had vaccine for pneumovax or prevnar). She has a history of allergies since a newborn, tested at 2yo with the old fashioned poke test but has never had testing for foods (which I plan on doing). Much improvement in Pandas after tonsils out in August (50%), a great response to steroids (up to 75% and amazing effect on stuffy sinuses and asthma and allergies/eczema, but once done with steroids, regression occurred). Now on Augmentin 875 bid, and we are back to the 50% place we got to with surgery. DD notices her symptoms ramp up with worsening allergy symptoms. Has anyone else persued allergy treatment as part of the Pandas treatment? If so, any worsening symptoms from allergy shots? Thanks Ellie

Allison, Your story is similar to ours. I can't yet tell you yet about long term recovery but would like to expect we will get her back to near normal. We got 50% improvement with Tonsils out in August. We then saw another big boost with a month of steroids but regressed back to 50% once they were done. We are persuing an immunologist consult, hoping someone will consider IVIG or Pex. I wish you well in your ongoing journey of recovery. Keep in touch. Ellie

Chronic sinusitis but I don't believe infection. Chronic runny nose, stuffy, blowing all day long. Goes through boxes of kleenex. No fever, no green on a daily basis. Has had sinus infection in past, but daily full sinuses.

I am so sorry to hear that. It is what we also experienced with my daughter after Dr. L. put her on the month of steroids. Great response but temporary. Started backsliding within 48 hours of last dose. On more than one occassion dd has said she wishes she could go back on the steroids. I will be interested in hearing what Dr. L. says. I was unsuccessful in ever reaching her for follow up. Ellie

My dd17 is currently being treated. Suspect has had many years but became debilitating 2 years ago. Tonsils out due to repeated infection gave her the best boost, steroids helped but we regressed again after completion. SSRI's not much help nor did CBT for a year. She had been on antibiotics now since October, not much help. I would see Dr. Latimer in person, she won't worry about the age. Keep us informed. There are a few of us here on this board but not a lot. My daughter does not have tics, just the OCD. Ellie

I'm glad you are seeing results. That was the timeframe for my dd17 last August to see improvement. I hope you get to 100%.

I am glad you and Dr. L are available and fighting for our children's future. I agree. Do what you need to to stay sane,afloat and balanced. Memom

We had a good experience with the month of steroids and taper for our daughter but the effect was gone soon after stopping the meds. She got to 75% with the steroids, now has backslid to 50%.

My original intent for posting this was to suggest that if families are going to use Dr. L., please do not consider phone consultation as a choice. I believe she is a good physician, but maybe unable to manage the schedule her front desk is scheduling her. It has happened in my office and I have had to set my staff straight. Managing an office can be tricky with emergency visits and all. Please don't for a minute think I am angry with Dr. L. but rather disappointed in the situation and my lost time. I am getting tired of dead ends and false starts. So many years of dealing with this disease.

I'm sorry to hear that.

I hesitated writing this note but feel like other needed to hear my experience. I know others have had some recent struggles with getting in touch with Dr. Latimer and now I have also gotten nowhere. I made my first contact with her office to make an appointment over the phone for a new patient appointment back in June. It took 4 weeks to get the phone visit (understandable). Then the loss of her husband caused a postponement of a few more weeks (also understandable). As others, I paid out of pocket for that visit and found it very validating and gave me some direction. I followed through with her suggestions (surgery for tonsils and Cunningham study draw), then made another appointment with her for follow up (also phone, also a charged visit). That call was in the beginning of October and though she was running behind, (we didn't connect until about 7pm that night), she did call back and made a plan for the next step (she called in steriods and antibiotics). She asked me to follow up after completion to see what direction if any was in order. I called her office to make another phone consult visit (now our third, all charged visits), and had an appointment for a Friday (two weeks ago) at 3:30pm. After a total of 4 calls to her office starting the time of our appointment, Andrea finally called and asked if Dr. L. could call me on Monday on her day off. Though disappointed, I could understand after a long week of seeing patients her need to get home. I called not once, but twice Monday to remind them and let them know I had not yet heard from Dr. L. The next day I called and spoke with Andrea again, twice, to let her know how to get ahold of me for the appointment. No call. After a total of 9 calls to their office over several days, I have given up. I emailed Dr. L. a week ago and have still not heard a word. I would suggest any one considering using Dr. L., do not use paid phone consultation. I was expecting this to be our last visit by phone as the next step would have likely been in person (she is a 12 hour drive from us). We all have experienced the hurry up and wait syndrome and many dead ends, with getting meaningful treatment for our children and I hope others take this experience of mine and consider face to face visits only. I am pusuing immunologic work up at this time as I expect it would have been what Dr. L. would have suggested as the next step. Hope this helps, Memom