MMC

Thanks for the heads up...I will set it to record.

Hello Michele, If I were you, I would not hesitate to call Dr Latimer and make an appointment...you will be pleased, as she is experienced with pandas patients. Most of our issues with her office have been encountered remotely, while trying to arrange phone calls and get emails and such. Being in Richmond, you are close to her. We saw her beginning of this month and drove from Raleigh, NC area...was worth the trip and have a follow-up appt, mid December. We could not find anyone in NC that "believes" in pandas or has the experience and treatment options she has. Hopefully, there will be someone in the future. - Mark

A few more nights should not be a problem at all. We have been giving our son benadryl each evening around 7:30 for about 6 months now...along with other meds (25 mg Amitriptylene and 1/2 Clonidine tab). This does the trick (most of the time). We have not noticed him getting immune to its ability to make sleepy. This has been our main management technique for his pandas and tics (chorea)...as night time is the hardest time for him.

Faith, Our kids are tolerating the pred just fine...today has been 2 weeks (out of 5). We have seen no noticeable improvement, but aren't looking for anything yet...we will give it the 5 weeks. We haven't tried to call since the pred Rx, but my wife did email this past week to get paperwork started for a 504 (testing modification) at school. And I am glad to report that Dr Latimer responded back in about an hour and will be mailing the necessary paperwork. Kids have had no issues on the pred, other than normal puffy cheeks and some insomnia w/ our old son. What we will do after this is a good question. She mentioned PEX possibilities with son, but not with daughter b/c her symptoms are mild. We would like to try Augmentin instead of the PenVK, but don't know if she will prescribe it. Symptoms......daughter, 13 has had tics for 8 yrs, wax and wane, fairly mild, but are still bothersome. She is also ADD and on Vyvanse for this which controls it. Son, 11 symptoms started back in March...very strong tics, a little OCD and ADHD. Dr Latimer stated his symptoms are more chorea like (Sydenham's Chorea)...which I was diagnosed with when I was 7. Hits him very hard at night, and about every 4 weeks has "melt-down" seizure-like tics for about an hour or more. It is horrific. I video taped his last one (which was a mild "melt down"), 1 week before our visit, burned it to dvd and we played it for Dr L in her office. This really helped her see him in his worse state. Both kids started symptoms after strep, of course. - Mark

Stephanie, We too have had issues with Dr Latimer returning phone calls and emails. Have never had an email returned, in fact. It took several tries for the phone consult to happen this past summer...so, this is not unusual. We paid $400 out of pocket for this. After the phone consult, she called and and spoke with our local pediatrician for about 20 mins. I was happy and impressed with this. But, since then, she has rarely returned a phone call. I am not sure if her office staff is not giving her the messages or if she cannot get to them all. I agree she is probably overwhelmed with all the pandas kids...her office is small and she is only one person. But, it would be nice to have more concise communication, and not be strung along expecting a call back when it never happens...this is unprofessional. We tried for 3 weeks to get her and our ped to talk on the phone again and it never worked out. Thankfully, by that time, we had an appt in her office and had her attention for 2 hrs (both kids). This is when we got the coveted prednisone for both for 5 weeks. For all the out-of-pocket money we have paid her office ($980), we are disappointed with the follow-up via phone and email...so, I understand your frustrations. We have a follow up scheduled mid December and will drive back up there from Raleigh, NC area...only about 4 and 1/2 hrs, so not too bad. - Mark

We saw Dr Latimer last Friday...drove 4.5 hrs to see her, and it was a great visit. The only issue I have had with her office is trying to communicate over the phone and emails, but this is the case with any doctor, I guess. We did a phone consult back in the summer, but since then, phone calls and emails are not returned most of the time...so we went up there and it was good to sit down with her, develop more of a relationship and let her examine our kids (son, 11 and daughter, 13). Our son has the most issues...she too said he has more chorea than traditional tics. He has exhibited some PANDAS like OCD, but mainly issue is w/ tics (chorea)...which is no surprise since I was diagnosed with Sydenham's chorea when I was 7. They both are now on preventative antibiotics (penvk) and 5 weeks of prednisone steroids. We are especially praying the steroids help our son. We too went next door for a blood draw (not sure what test she requested)...were in/out in about an hour, not too bad...but that office is with the hospital there, not with Latimer. We are scheduled for a follow-up appt in mid December. I don't know about everyone else, but we have paid out of pocket for Dr Latimer phone consults and visits...very expensive, but she is the best we could find and closest, even though over 4 hrs away. - Mark

Both our kids have PANDAS. Daughter has had it for about 8 years...son has had it for about 6 months, and he has been the hardest hit. It has affected them differently. Daughter's Cunningham test showed cam score of 187, in the PANDAS range. Son's is 197, more in the SC range, but overlaps into PANDAS...he has more severe tics. We thought he would not get this, but did after strep back in March. Dr's records showed he had never tested positive for strep until then. There is definitely a genetic predisposition for this, coming from me and my father's side. - Mark

My husband really takes a lot of this on emotionally...he feels that the anxiety/ocd component was from him, and he has a hard time with that on some days. When Diana asked about autoimmune issues or RF on the phone with me...she told me RF was autoimmune a lot clicked in my brain, and I was upset with myself for not realizing to disclose this to the peds when they tested positive for strep--the way my mom did when I was a child. However, as I thought more about it...I really don't think anything would have been done different by my peds office. I just think this generation of doctors is very careful about antibiotics. My father often tells me that when he had a sore throat and went to the doctors...you got a shot of penicillian right away--I'm guessing this was because they had no way to know if it was strep without doing a culture. I truly am hoping that this is a lot like RF. My uncle's experience was difficult...six weeks in a regular hospital, and a very long time in a heart hospital. However, he recovered and took pen for 20 years without any more issues. I am hoping for all of our kids, that once we get them back to their baselines--prophylaxis are enough to prevent relapses--just like RF. I'm probably making this out to be far more simple than it is, though. MMC, Did you take antibiotics after this first happened to you? You said you ticced until you were 14, was there ever a waning of symptoms for you prior to that--like the episodic course experiences by PANDAS kids? Did you receive any treatment that you were aware of? Thanks, Karen Karen, Yes, there was a waning before I was even 14...as to exactly what age, I am not sure. I am 44 now, that was a long time ago. I have tried to remember what it was like for me at school. I was in the 2nd grade when I was diagnosed with SC. I remember my mother telling my 2nd grade teacher about it, but other than this, I don't remember have any real issues at school. I mainly remember having a lot of tics in the evening, after being tired out from the day. This is my son's main issue as well. We have to give him benadryl every night to relax. As far as treatment, I was on monthly prophylactic intramuscular bicillin (shots in the butt that hurt!)...for 10 years. Bicillin is slow release penicillin. Then when I was 17, I went to pen vk oral, daily...until I was about 20, then stopped altogether. This prevented me from getting strep again. This was the only treatment I had. I seemed to just slowly get better over time, until it was pretty much a non-issue. Too bad my kids have it, now it's an issue again. MMC

Hello to all. I was diagnosed with Sydenham's Chorea as a child (age 7), so I know I passed this down to both my daughter and son. Not sure whether they have SC or PANDAS...or maybe I had PANDAS, and SC was the closest diagnosis they had in 1972. (Cam scores are on upper level of graph, towards SC for both) I am the Dad, the leader of the household, and the carrier of this awful condition...so, this has gotten me down since our son started showing PANDAS symptoms back in March. He caught strep from his sister in early March. We thought he might not get it b/c he was almost 11, and never had symptoms. But, we don't think he ever had strep until March of this year, which is quite amazing. Anyway, I wonder if we could have prevented this by getting him on antibiotics a few years ago...but I seriously doubt a doctor would have prescribed this when he had no signs of PANDAS. Most doctors don't even want to prescribe antibiotics even after having this condition, as you know. Dr Latimer has him on penicillin now. No one ever told me this could be passed down to my kids. So, what could I have done to protect my kids better from this...I am not sure. We just thought we wouldn't have to worry about our son getting this, 50/50 on our side...now he has it and is 5 times worse than his sister. Seeing my son suffer like he has...knowing this is from me...this has been the worse year of my life, I am sad to say. But somehow, this will make us all stronger. At least, we know to tell both they need to be aware of this if and when they have kids. We are still consulting with Dr Latimer about different options and have an appt to see her next month. We are in NC...we couldn't find a Dr here who recognizes PANDAS enough to offer treatment options. This just added to our frustrations, as you all can identify with, I'm sure. BTW...as I wrote in a previous post, I mostly outgrew my SC/PANDAS by the age of 14 or so, and no one ever knew I had struggled with this by the time I was in high school and college. My main issue was tics, not OCD...kids are the same, slight OCD and ADD but main issue is with tics. So, this gives us all hope...get older and outgrow this stuff.

Hi nevergiveup, I never really had a relapse from SC...I just outgrew it slowly. I am a male, so can't speak for the pregnancy part. Both of my parents have passed away, so I cannot ask my mother about my history, and it is a bit foggy. I remember most issues were in the first 4 or 5 years. At puberty, and after, my tics really started to diminish. Most people would never know I even had them. At age 15 or 16, I certainly had no issues at school, or taking drivers ed, for example. I was on intramuscular bicillin for 10 years (those monthly shots hurt!), then on Pen VK a couple of years after that into college...this did its job and did not get strep again. I have a few tics into adulthood, but they don't bother me much...no OCD to speak of (never struggled with that much). So, after puberty, I have led a normal life...and never had steroids, IVIG or PEX. So, yes there is great hope, which I have for my kids. I was never told this mess could be passed to my kids. So, have been a bit shocked, but I understand what they have, at least to a certain degree.

We know what you are going through. Our son (11), has had the same type of tic terrors at night...half a dozen times now, since April. Very scary. He eventually "Passes out" and goes to sleep. Tics will be from head to toe...head jerk, stomach roll, hand tics, leg and foot tics. He can cry and scream for 30 mins to an hour, fighting to get to sleep. All my wife can do is hold him on the bed. All I can do is pray and feel despair like have never felt before...then can't sleep myself. This stuff will wear you out. We have learned to try and head this off by giving him Benadryl early in the evening...about 7:30 to 8:30. This really helps, but if he has a bad night, it still may not prevent it altogether. He is now also on clonadine, and has been on amitriptyline in the past...don't resolve tics, but calm and make sleepy. He has a lot of the tics during the day, in school and certainly get worse in evening with homework. Some days are better than others of course. I am starting to give advil again, after stopping for about a week...found a better flavor he likes. Will give in morn and eve. I think this may have helped, after giving it for 2 weeks straight. He just fell asleep on the couch (9:20pm)...after ticcing and tossing around a bit, but nothing major. He can no longer go to sleep in his bed like normal...he has to watch tv and be distracted. I would give the Benadryl a try if you haven't. Drs say it is safe, no side effects.

both our kids started with tics...daughter's have been milder (for 8 yrs now)...son's have been very severe at times (since this April). He also shows some OCD. His cam score is 197. Daughter is ADD, but has gotten better w/ meds and age. Her cam score is 183. Son is the one we worry about, he is really struggling. Have had phone consult with Dr Latimer and appointment to see her next month. I was diagnosed with Sydenham's Chorea when I was seven, but it was really more like pandas, I believe. Both are the same thing, probably. I had very little, if any OCD. So, my kids are following my pattern. My sister had mild tics growing up, very much like our daughter.

Thanks for the reply. Dr Latimer mentioned Clonidine. We will need to ask his local neuro doc to see if we can get a prescription. If this would help with the meltdowns, it would be wonderful. We are resisting Risperdal b/c of the potential side effects we have heard about. Is your son school age? How is he in school with the clonidine? Our son is out of school presently for the 5-week summer track out. When he was in school, he was not taking the amitriptylene in the morning b/c he did not want to be sleepy...so, he really struggled in school (grade 4). He just got PANDAS back in March, so this is new for him. But our daughter has had it for 8 years, and thankfully her case is mild comparitively. (I was diagnosed with SC at age 7, but was really more like PANDAS). So, this is a genetic flaw coming from my side. Dr Latimer consulted with our ped after we consulted with her over the phone for one hour recently. That was an expensive hour...but will be well worth it of course if things improve. She and our ped really want the blood tests done (on both) before they do any steroids. This is the plan of action at this point. Do a one month steroid burst and then maybe antibiotics. We are not at the point of considering IVIG or PEX...she said if we got to this point, we would need to make the trip to DC. Our son has had very little OCD symptoms...he mainly has severe tics. But my wife is noticing more OCD traits lately she said. At this time, we are just waiting for Cunningham's office to send us the kit and instructions on the blood tests...this is taking soooooo long to get started, we are going crazy. Thanks, Mark

Sometimes at night (like tonight), our son's tics will become uncontrollable from head to toe and he cannot calm himself down. He has severe head tics, coughing spells and cannot catch his breath...like panic attacks. He is on 50 mg of amitriptyline at nighttime. We also give him benadryl...the dye free kind. But, these episodes can last an hour and my wife is at her wits end. Tonight, he just would not calm down. He had a birthday party yesterday and his friends slept over last night, so tonight, he was pretty tired I imagine. He spent a lot of time in our pool this weekend...which is not heavily chlorinated, but does have some. I know chlorine is suspected as a trigger. About the only time his tics don't bother him is when he is active, playing with his friends and so forth, so we hate to tell him to stay out of the pool. We are trying to organize the Cunningham blood testing...and have consulted with Dr Latimer in DC. She is working with our pediatrician. They want to get the blood testing done, then start him on steroids for a month. It is taking so long to get this started, we are very frustrated. So, if anyone has any meds that work well at night, we could request these from his local neurologist. Any ideas are appreciated. Thanks, MMC

Thank you for your reply. I emailed Dr Perrin and she replied back...gave me 3 names. One is a professor at Duke and is not taking new patients. I got Dr Nelson's name from another post on this forum and my mother-in-law in charlotte found it also. We have to get a referral from our primary dr first...hope to get this by tuesday of next week and will be calling dr nelson unless we find a good one in the raleigh area. Our son is really ticcing bad tonight and has his first grunting vocal tic when he moves...very sad. Not sure how he is going to get along in school...we definitely need some expert help and treatment options. There is even a little more to my family history...my father had a sniffing tic for several years (he was obviously an adult, not sure if he had issues as a child). My sister had (and still has some) mild tics, similiar to my daughter's. Not sure if this is pandas or tourettes, seems more like pandas since strep has been the trigger, but maybe it triggers tourettes also? I hope your other 2 don't get it...keep them away from strep! (not sure how to do this). Thanks, MMC

Thank you for posting the names of these dr's in the charlotte area. We live in the raleigh area, but my mother-in-law lives in charlotte and she was researching for pandas drs and called me to give me these 2 names...I then logged into this forum (am a new member) and saw your post! I now need a referral from my son's primary care dr...have an appt on 5/26, it can't come soon enough b/c his tics are horrible this evening and now has a grunting vocal tic. we are getting more nervous about this every day. I hope we can get an appt with Dr Nelson in the salisbury office, would be closer to raleigh area. MMC

Hello, I am new to this forum. I am posting this request in hopes someone knows a doctor in the raleigh/durham, nc area that acknowledges pandas and has treatment options. Or even a doctor in NC within driving distance of the raleigh/durham area would suffice. Our 10 year old son has recently started showing signs of pandas. He has developed severe tics and some adhd after being exposed to strep from his sister about 2 months ago. He was put on antibiotics (w/o a strep test), and his sore throat cleared up...we are pretty sure he had strep at this point due to the onset of pandas. We believe our daughter has had pandas for 8 years, since she was 5. She has slight to moderate tics, that will come and go. I was diagnosed with sydenham's chorea in 1972 when I was 7. I believe it was really pandas, but this is the closest thing they knew to diagnose with back then. We had dealt with having one child with pandas very well, but are now overwhelmed with two. And it has hit our son a lot harder...we are really struggling about what to do. We are currently seeing a neurologist at Raleigh Neurology...he is aware of tic disorders and knows some about pandas, but I want someone to see my child who has a history with treating pandas. Currently, this neurologist has prescribed a couple of drugs to calm him down at night and we have a follow-up appointment in a month...we need more than this. I want to know the best options in preventing strep, etc. For 10 years, I was given a monthly injection of bicillion to prevent strep. From what I understand, this was normally done when rheumatic fever was confirmed...but it never was in me. Regardless, I didn't get strep any more, and pretty much grew out of my symptoms. Now, doctors don't want to prescribe antibiotics as a preventitive action from what I see. I understand resistance can be a problem. Thanks in advance for any advice on nc area pandas physicians.