dasu

My daughter was diagnosed with a sudden onset Pandas one year ago. We also began to notice traits in our son, age 6, too. This started with really extreme and odd silliness and laughter, potty talk, defiance, anger and very impulsive behavior. Car trips were always the worst. The severity was cyclical and looking back has gone on since age 3. My daughter just had a regression and this timed perfectly with an increase in my son's issues. Additionally he has stated that he think about hurting himself and he has been hurting other kids (pinching, kicking). He has been showing various mild OCD traits (chewing sleeve, asking repetitve questions) and his school work has declined. So we took him last fall to see Dr L and she prescribed rifamin with no follow up. This latest flare has gotten worse and on visit two she has put him on Risperdal and recommended removal of tonsils and prescribed penecillin. I've always been an anti-drug person and am not that comfortable, but then don't want to risk my sons health either. Are there any options here? Also I have read some about Lyme and MTFTHR, should we look into that immediately or wait this out? The sudden onset on harmful thoughts have scared me.

I am not very consistent about visiting this board, but have received some usefull advice. One of the items I noted was that it was hard to follow the stories of individual cases. When I first discovered this forum, I naturally wanted to know what the outcome of each case was and would compare symptoms against what my daughter was going through. I almost wonder if each person here should have there own thread so you can do that. That aside, I wanted to give a quick update. My 4yo daughter had a sudden behavior change last Christmas, after which she stopped talking, stopped sleeping, regressed, started rocking, displayed a number of verbal ticks and became very emotionally volatile. It was quite rough. Our primary care Dr suggested Pandas immediately (big help, having read through many stories here) She saw Dr L in April and after antiobiotics we saw a dramatic improvement. We did the Moleculera tests shortly after treatment, and she came up as likely Pandas. She also had her tonsils out in August (side note: make sure the ENT talks to the Pandas Dr.) She has gradually improved since then although there still are rough days. One other interesting effect of Pandas My wife became concerned about our son, who is 6. He has some minor tics like licking his fingers and biting nails skin etc. He can be quite impulsive and hyperactive. He also There are also times where he just isnt there. These symptoms havent come on suddenly but they do appear as if they are worsening. Its not as clear in our heads, and a lot of childhood is going through stages. What really triggered our thinking on this was talking with other folks in Dr L's waiting room: many expressed that while one sibling was diagnosed with Pandas, other siblings eventually showed effects of it after time. After talking with Dr L, he had his initial appointment a week ago. We havent seen any positive change yet but it could be early...or we could be wrong.

My daughter had a rough time with sleep before treatment. One of the first signs treatment was working was that her appetite returned and she slept through the night. After the tonsillectomy, she has regressed some and we are having to lay with her at bedtime and, for a couple of nights, sleep on her floor. There isnt much to help was instead for myself: giving in and sleeping on her floor allowed me to get more sleep and be a better parent. Thats essential for dealing with the flares! As for habits etc that helped her: red night lights, lots of stuffed animals, bath and stories before bed. I agree that sugar and chocolate seem to make things worse. As for meds, tried valerian and while that appeared to help the nights, made the days worse with more rage and anger. Melatonin got her to bed earlier but also got her up earlier too.

I forgot to add that she has been on prophylactic dose of penicillin. It takes a while to get into Dr L, maybe the Tonsil Dr might do it...

My four year old daughter has PANDAS which started last fall, was confirmed through testing this spring (bloodwork with moleculera and standard) and has been treated by Dr L with a round of Clindamycin and Rifampin. The improvement was dramatic. She was happier, emotionally more stable, she wanted to spend time with the family and other people, she slept through the night and she gained a ravenous appetite which was good because she had lost weight with PANDAS. Since the antiobiotic, though, we seem to cycle between good periods and mild regressions. Dr L has stated that we should expect that. My daughter just had a tonsillectomy 11 days ago, and she seems to be a lot worse now. She is emotionally unstable and easily and often break down into fits of anger, both verbal and physical. Motrin, which previously helped us through regressions, does little to improve her. I did some reading and folks recommended antiobiotics before and after surgery. As its obviously too late, are there any recommendations on how now to proceed? Is this just something we need to slog through?

dedee, what sedative did you use? my daughters psych was supposed to check what would be advisable for a 4 year old but he hasnt replied yet. the whats-best-for-you sounds familiar. :| hope, interesting observation, today has been a *bad* day for my daughter. was crazy at the store and then too scared to have mom leave her alone at gymnastics. twirling hair constantly. anyways i read up on bartonella and there are a lot of over-lapping symptoms. sounds like a good test to do. nicklemama, thanks for the feedback on your son. the range of symptoms is breattaking.

at this point there is no lab work. when my daughter was first sick we couldnt even do a culture or bloodwork as she reacted so violently. she has settled down a lot, so we are hoping we can do something. the rest of the family tested positive to strep though, all with similar symptoms - minus the pandas stuff. im looking for an LLMD in central virginia but for my dad who has a lot of neurological symptoms following lyme. so ill keep that in mind. dedee checked out your sig, you must have quite a life.

Thanks guys. Dr L stated that we would likely see some improvement "in a few days". (I really wish I could have spent more time at her office asking questions etc, the traffic was awful in NoVa and she was late and running behind. ) I am impatient. And more than that I am worried that its something other than Pandas, perhaps bipolar, or oppositional defiant etc. While my daughters initial symptoms were very Pandas-like, she has more of the hyperactivity and volatility now than the OCD, Tourettes, so that makes me question things. Plus I never get much sleep with the constant wakings and request to sleep with her. Again thanks for the information and advice!

My daughter is 4 and we visited Dr L who diagnosed her with Pandas based on her history only. She has been on Rifampin for four days now. She hasnt changed as expected, she is maybe a little worse. The only change is that her appetite has returned. She still has some OCD, is anxious, clingy, hyper, cant sleep, and very volatile. Should we really see a change so soon? And if not does that mean she doesnt have Pandas? Im uncertain when there is no real test yet for Pandas.

Thanks all for the warm and helpful welcome. Its good to find some people who have experience operating outside the typical medical system. You all have been through some rough stuff! Who thought life would be like this when we were young? I am glad to hear the positive comments on Dr L. It has been a long wait though. The suggestion on writing down a chronology of symptoms is good because it gets jumbled up easily and all the more so in a doctors office. The Lyme connection is interesting. My dad is in his 70s and just started seeing Dr Bach in PA as he contracted Lyme last spring and has had increasing neurological issues after the hoi polloi physicians did not treat the infection adequately. We live in central VA (used to live in MD) so its long trip for us as we live in central VA about 1.5 hours from DC. I would be interested in more local Lymes doctors. Thanks for the tip on NSAIDs. Do you administer as prophylactic or wait until those days or weeks when she is off? (We have noticed that there are cycles although they are irregular.) The genetic root of this is also intriguing. Its is part of why we are thinking it may be bipolar as one of my sisters has two bipolar kids and my other sister has a daughter that is likely OCD. That seems to suggest a genetic component to me, ignorant as I am. On the flip side, no grandparents or parents have similar mental issues, except for depression but all of it fairly well managed. Anyways the methylation article and all the different new avenues it opened up sparked some thinking. The idea of tailored diets and supplements is fascinating. A couple follow up questions... Does anyone recommend a DAN doctor in VA? I looked up DAN doctors ...what about Erick Rydland? Has anyone here tried counseling or therapy and has that been successful. I am skeptical on what a 4 year old will pick up but have heard good things regarding RDI for autism spectrum distorders. My daughter has been on valerian to stabilize her mood and melatonin for sleep, when thats been elusive. Are there any special considerations for PANDAS patients for either? Abx is antibiotics correct?

I am new to the world of neuropsychiatric disorders but like most folks here have it forced on them. So I have been reading through these forums and been having trouble putting information together - there is a pretty specialized vocabulary I am trying to learn. My daughter is 4 years old with issues that may be PANDAS. A bit about her history: She had a rough start with GERD but afterwards recovered well and seemed to be a fairly typical girl until 2 years old about (not saying this caused it) the time our family came down with Mono. After that time she complained about a lot of stomach and body pains, she described it as a "pit in her throat, tummy and bottom" and also seemed more lethargic and less than happy. This went on for almost a year before the primary doc referred her to an allergist who discovered she is allergic to wheat (not gluten) and almonds. On starting the wheat and almond free diet her symptoms improved as did her energy and mood. However after a couple of months of this bliss she suddenly started acting autistic: she stopped looking at people, started rocking, stopped talking and playing with toys etc and regressed often acting like a baby. At about the same time we went to the doctor as none of our family was feeling well and tested positive for strep. Since that time she has recovered somewhat in that she talks and interacts with people, plays with toys and her brother and friends but now is extremely hyperactive, makes odd noises, has frequent tantrums and rages, and can be quite sensitive to touch. Oddly enough she can act OK when out of the home, although we have noticed that taking her to doctors and psychiatrists set her off. She has since been to a pediatric psychiatrist who hasnt been able to diagnose anything as he says that this appears like bipolar but she is too young, as the primary issues started at 3 years of age. So, does this sound like PANDAS? Or something else. But the bigger question is what is the next step. We have an appointment in a month with one of the PANDAS doctors, Dr Lattimer in MD. There is a LOT of information on this website about genetic tests and treatments based on the results - who coordinates/drives those tests? I have also noticed a strong connection to the Defeat Austism Now Doctors. Should she also see a DAN doctor? And in the mean time is there any recommended home-based protocol?