Amy B

Hi DanDD We are also in the Boston area working with a Neurologist and finding treatment difficult. He is well versed in PANDAS but does not believe in abx for preventive reasons. He will not prescribe unless there is a positive strep test. He said he used to provided abx 5-6 years ago but not anymore. He said there is no evidence that the children will be helped. He said even with all these treatments the kids symptoms will continue to reoccur. I had argued with him and we agree to disagree. I even mentioned some of the books that I have taken out of the library have called for abx to used as prevention for step. Isn't that the normal protocol for treating PANDAS. He said it used to be. At his same hospital there is a nurse there who was in a online article about her son and strep and that he will be on abx till he is 18; go figure. I almost feel discriminated against. He also said a lot of these doctors who are providing phone consults, IVIG, abx etc. are making money off of parents. I found that to be a pretty unbelievable statement. He said those methods do not hold any guarantee or cure. I had also said doing nothing does not help either as ds repeats his episodes every couple of months and we pray it does not get real bad. The stress !!! His protocol is psych drugs and counseling. I don't think counseling is useful at his age and he didn't not do well with the tenex, yet they wil happily go to the next drug. Needless to say we were thinking about Dr.Gellar. Like someone mentioned earlier we are just not a priority and I feel like ds is slipping through the cracks. I find this puzzling for being in the Boston area. Again, I'm sorry you sound like you are feeling frustrated as am I. Please let me know if you have any luck around here. Wishing you all the best.

Thanks. We went to the px office today. I'm pretty sure ds has strep, although rapid was neg. Tics and noises are returning. Dr.Torres I felt was big on the psych meds and therapy. I am not in total agreement with him. Ds is on clonodine. It helped him last year but I think now is very insignifigant. He bumped him up to tenex. ds did not do well with that. We went back to clonodine. He wanted to try the next course of meds. Dh and I decided no more new psych meds. My sons symptoms would change every few weeks or onths as well. It's frustrating to say the least.

Thanks you really got me thinking. It would be great for the nonreactive kids because it would decrease the spreading. Not such a great idea for the pandas kids. I've been trying to think outside the box. It's a very small box.lol. We went to pediatrician tonight. The rapid was neg. as always. She did give him abx, penicillian 10 days. I am very lucky to get that. They do not like to prescribe any antibiotics with out a positive. I'm just afraid its not strong enough and this illness might be a bad one. He has already started the eyes and mouth and some noisy tics. My dh is freaking out again. What do you think about the penicillan? They will not give out augmentin or azithro. They want to save those for when he's really sick. I did get ammmox a few months ago. I do think it helped. Thanks.

Hi everyone. I'm not online all the time so you may have talked about this before. What about a Strep A vaccine. Do we know anything about it. I had googled it and they were working on something. I didn't see a whole about it. Is anyone working on it do we know. If this is a dumb or repeated question "Sorry". Just curious and hopeful.

How did you like Dr. Gellar ? We maybe contacting him in the near future. Someone else had recommended him. Our son is doing OK. We have seen much worse, so I am grateful. He was on a six week course of antibiotics that helped from the ped.. We go back to see Dr.Torres in April. He does not seem to believe in any of these treatments anymore at least. Long story we had a long talk etc etc. When son7 first got sick it took nearly 10 months for the complex tics and verbal tics to go away. But it did. I think had we got antibiotics sooner things would have been different. I would love to hear more about Dr.Gellar if there is anything to ad. Does your dd have tics or ocd or both ? Take care. yes he did mention that he does not reccomend long term antibiotics. i am still processing all the info from our appointment. i think he is incredibly thourough. my daughter is almost finished with a 2 month trial of high dose augmentin. that was not from torres, it is from geller (mass general). i dont know what the next step will be. she has not had strep since may 09, but symptoms are still strong. i havent noticed a huge change with the augmentin, as i hoped. thanks for responding

Thanks for the info. I am going to ask the ped. for augmentin today. Wish me luck. She does not like the idea of Abx without a positive strep test. Ds has not had a positive strep test since the big original episode. Although I know he is affflicted with the Pandas.

Actually, a pediatrician is likely to have more expertise in antibiotics than a neurologist would, and you can get in to the ped more often, so I think that makes a certain amount of sense. By the same token, a pediatrician is probably not the right person to decide which AED your child may or may not need. Ok. Dum question what is AED ?

We see Dr. Corbier there. We started seeing him for my dd's seizures and then kept going for our behavior and other issues. He is very good and very busy. It takes forever to get an appt and our appts always run late. I feel that he really knows what he is doing and he gets that light bulb look and has ideas of what to look for. He was the one who first suggested PANDAS for us. But, he was not big on treatment and with our low titers he dismissed the idea at first. It's not that I don't recommend him, but if seeing him for PANDAS, I would be very vocal about what you want and whether he would treat with antibiotics, etc. (whatever it is that you are hoping for). He was the one that tested for the hhv6 virus and high titer for it but he was not big on trying the treatment for it. Our Ped went ahead and ordered valtrex to give treatment a try. Lisa, who are you going to see there, do you know? Susan Susan, I was hedging toward Dr. Corbier...only because he is the only one I have received some feedback on...but I guess in the end it will depend on whomever can see my son before June when the current course of azith runs out...and we need our next course of action...if it took 7 weeks for them to send me the paperwork to fill out...I am not hopeful on getting an appointment anytime soon... --Lisa Thank you for the name and place of someone. I live near Concord. The thought of the reluctancy to give the abx is kind of a turn off as I know my son will need them. I have found with another neurologist from Childrens that they will lable and or diagnose him yet do not want to treat him, my Ds. They push that off to the ped. The neurlogist has told us in the past to go and ask your ped for the abx. What's up with that. Yet they would prescribe him whatever psych meds. I feel there is a abx taboo. Anyone else feel that way here in MA. I didn't like that and I didn't like him either.

Ny son was diagnosed as cronic tic syndrome and the neurologist said it ma very well be TS if it lasts over a year. He had an abrupt case while we were away in Aug 08. He was very severe nearly overnight. I mean skip jumping. Amrs, legs and head jerking not stop. And very loud grunting and bark like sounds. They did titers weeks after and found that he did have a previous infection. The nurse then tells me about the pandas.

Our Ds is the same way. The neurologist says he is "consistent with ADHD". WE thought this years back for obvious reasons. He cannot sit still unless watching TV. He will then not actually be still but quiet. His 1st grade teacher says he has a tough time and gets frustrated easily and always wants to go the bathroom or out to the hallway etc. Anything to get out of the quiet classroom. When he was younger in the early intervention they would put the waited vest on him because he was bouncing off the walls and that would slow him down a bit. Now we are on the clonodine. I don't know how I feel about that good bad or effective just yet.

Is Dr.fulbrigge a neurologist at Childrens ? I was thinking about trying to make an appointment with a new doctor. I just don't want to go the route of a neurologist again. We had been seeing one at CHildrens. He was not good. I am curious to know the name of the neurologist Beth Maloney had seen at Childrens that was not helpful. I f I recall she did not name him in the book. We live in Mass also. My Ds is 7 and things are getting worse again and not better. Mood swings and explosiveness as well as motor and some facial tics. I am going to ask for augmentin from the ped. tomorrow. Can I ask where the information from Swedo on strains in the north east might be found. I just want to have all the answers for the ped. She is not a firm believer of Pandas. And when I bring Ds in he just doesn't look too bad. He presents well in the office but to live with it so crazy as you all know too well.

Hi. My ds has neck pain from time to time. We had thought it was from tics in the past (his motor tics have been better but am afraid about to come back thats another story)but he has started to mention the neck pain again. When he was sick with a high fever back in Sept and he also had this excruciating pain in his legs lower legs like the calf area. He was in tears. We brought him to the px. They did some blood work. Cannot remember everything, but I do remember that ESR I think that someone had mentioned. The px said it was the highest he had seen. I was alarmed to hear it. Then he said it was common post infection and the levels will go down in a few days for him a little longer than normal because it was so high. We rechecked the levels a week or so later they were down. I will be watching for more mention of the neck pain. Let me know if you find out something. Thanx.

Thank you so much for the advice. I am going to take notes from you in the morning. Really I am. I will write all the topics and get my ammo. together, so I am sure of what I am saying. Rf of the brain is easy to get the point across. Even I can understand that. Can you tell me more about that silver for the viruses. I will try to look it up in the morning. Thanks again. Hopefully I will have an opportunity to speak with neurologist's nurse tomorrow. We never speak to the neurologist just the nurse. Is that the norm.

Hi everyone. I have a quick question. I'm sure you've heard before. When asking the pedx and the neurologist about propolactic antibiotics they tell me that it won't help against viruses. And my ds has pandas reactions to all his illness (cold, flu, etc). Although if he gets strep he will again have the full blown TS. I just need to know how to respond to that question. I've already mentioned that getting strep is too big a risk that I do not wish to take. Also isn't propolactic antibiotics the protocal for pandas? Please tell me if I am wrong. Thanks.

Hi thank you so much for the warm welcome. Sorry I have not replied back sooner. It has been crazy busy at home and school as you all know. I was volunteering in my son's class yesterday and just realized that my drier is shot. I have to decide on a new dryer and fast. No fun there. I will try to answer everything as I rememeber so things go back more than a year. I cannot remember the exact Ab they gave him It was something that began with either Cep or Cap. I do not recall the dosage. This was what the pediatrician gave us. I did not know any better at the time. The neurologist office told me to tell the pediatrician to prescribe an antibiotic and thats what we got. He is ADHD according to the neurologist. We were not surprised. My only concern is that he can sit and learn academically. Over this past year he has had many Strep tests. Some I think may have only been the swap and otthers sent out. Only reason why I htink this now is because the office would sometimes call me and inform me if it was negative. And other times they would not call at all. I'm guessing they never sent it out. I was finally at my wits end yesterday with the neurologist office. I called to speak with the nurse who is my contact and she was out of the office for the day. I left a message on her vm nearly in tears. I am at a breaking point. Another nurse called back very nice and listened. She relayed everything back to the neurolgist. His reply was he should be seeing a psychologist or psychiartrist. This in regards to his melt downs and behavior for coping methods. When he is sick it is not a normal temper tantrum where he can reason. We have met with someone before. He was very nice but that is not what we need now. Ok this neurologist is suppose to be a TS and Pandas expert but does not want to give out propolactic AB. The nurse says "We don't want to hurt his little tummy;" So they would prefer to keep going up the ladder of meds with not even trying AB. Thus he keep this vivcious cycle when any illness presents himsself. I am so mad. His advice along with the meds and Psych. is "He might get better, he migth get worse, and it might just go away." Words of wisdom. I just wanted to share that with you all. I guess if he cannot go the Ab path I guess we will leave and start all over again. I wasted a year. My husbad said he was useless also. He clearly preferred talking to men rather than women. On one occasion to I guess to get me to stop asking him question he gave me pen and paper to "keep me busy" making a list of tics my son had. I only asked two questions. I have a one hour window of opportunity to ask questions every couple of months and I guess he cannot be bothered. I was very offended. I am a pretty soft spoken person. He was rude also. But to be honest with you I would have tolerated his rudeness for my son's benefit. Clearly that is was not the case. I have reached my breaking point. Sorry for the long read. But its good to vent. I guess I will be starting from scratch. I just do not understand why some kids are getting the AB and others are not. Shame on all these doctors for making children and their familes suffer. I'm sorry if I sound mean. I'm really not this way.

Hi just wanted to say hi. My name is Amy and I have been reading on and off for a while hoping my son would get better. A lot of the the topics you discuss are a wealth of information and at same time way over my head. I am at a loss as my 7 year old son is a Pandas kid. While away in Aug. 08 he had what we thought was a cold, no big deal right. In less than a week he had full blown tourettes. It was devastating. He could not control himself at all. He could not walk with out jumping, twitiching, head banging, head twitching, grunting and barking. WE soon found out that he indeed had a strep infection. Thus the neurologist said that it was Pandas and ADHD. Yet they only would prescribe a two week dose of the antibiotic. His tics slowly subsided, it took a long time (months). They preferred and pushed the clonide and tenex, etc. He is on clonodine one Mg (one tablet) per day. I don't find it too helpful, unsure. They did not and do want to prescribe him the antibiotics. I don't understand. He is suffering. We are all suffering. When school began last year (kindergarten), it was hard for everyone because his vocal tics were so loud and hindered the teaching and learning for all in his class. He still grunts, clears his throat, groans, mouth tics, and eye movement thing. He is now in full day 1st grade and it's difficult for him academically and concentration. His teacher has told us he had been wandering around (lost). Cannot sit still to get his work done and school work seem to be getting the better of him lately. Although I spend at least 1.5 hours with him on the home work each night. His behavior and attitude gets so bad when he gets sick. He angers easily and will cry at the drop of a hat. It is truly unbelievable. I think he does have strep now or just recently. He has gone off the deep end. I have been in the pediatricians office at least once a month for the strep test. They have been neg. The last time was 3 weeks ago and neg. How can that be when I know he is Pandas sick. I can see it and I live with it. How can he have all the symptoms but a negative test. And since it is negative know one will listen. I'm afraid we need to start all over again with another neurologist. Although his current neurologist is at Children's Boston. He cannot seem to help us any further. Why are some kids getting helped (antibiotics) and others are not. Any thoughts or suggestions would be greatly appreciated. Also any suggestions of a doctor or neurologist in MA would be so helpful. Sorry for the long read it has been a tough day. Hope tomorrow will be better.