harmony

We had success on Clonodine. Cognitive therapy for his OCD did not work for him without the Clonodine. We do not give it to him regularly= except when his tics and OCD are seriously interferring with his life. 1/2 of a .1 tablet worked for my son (when he weighed 50 lbs.) I agree, only at night. Advil works for his anxiety!!!!!!

If these behaviors are interfering with his life then I would be concerned. (ex- refuses to eat, sleep or play because he is all consumed in writing words. Or has tantrums/anxiety issues that cannot be calmed while writing down Pokemon names- feeling the need to make them perfect??) If he seems happy and content while doing these things and can still function normally- I would not be too worried- I would probably be excited (child interested in learning - that is awesome) And if that is the case, I would agree with his teacher- this can be a GOOD thing (I was a teacher and director of a private school for years- until I had to quit with my sons first PANDAS episode). Kids learn in many different ways. Good luck and let us know how it goes, I hope this help!

We get several warnings every year- I just call up the BOE and tell them I have Dr.s notes for every absence. They always say "no problem- we just have to send the letters out anyway". My son has missed around 15 days already this syear- not to mention early dismissals and tardies. If we decide to give my son the invasive sinus surgery that his Dr. suggested- we will just put him on hospital homebound. How many days does he miss a year on average? The note that gets sent out in Ga.- is a joke- the BOE will be able to tell you exact number of absences is allowed.

I collected information and made a "teacher resource" binder. I filled it with clinical studies from Swedo, info. on OCD, Tourettes, Pandas and teacher resources. I don't know if your daughter was ever diagnosed with Tourettes (my son was- but only has tics while sick). http://www.tourettesyndrome.net/behavior.htm This site is awesome it covers the "plus" or co-morbid disorders- including behavior changes, anxiety, rage, OCD. It has an actual section for teachers and classroom settings. It is designed to help teachers not only understand this neurological disorder but also gives suggestions for handling and preventing situations. I have used this book for the past 3-4 years, I give the book to each teacher at the beginning of the year during our conference- they can bring it home and read it or just reference it when certain problems arise. And they give it back to at the end of the year. The problem is- you can educate the faculty on the disorder (assuming they will actually listen and take you serious) - but chances they don't know how to handle situations when they arise. I haven't checked for teacher resources in years- you might actually be able to PANDAS teachers resources now- the word is getting out good luck!

I remember that too- "diagnosis of PANDAS could not be given unless the child experienced strep triggered exacerbations more than once." That is what confused me about Sammy and Lauren. I guess maybe the criteria has changed. ???????

Thanks a lot Buster. You might know my detailed situation from EAmom (really appreciated her all helps ). ASO is only one check item I can get locally which is some kind of connections with PANDAS. But from all his symptoms in the past years, he fits PANDAS which I think. Now, he had some backslide after big improvement and looks like it is "still" there. I think this is good at some point as it is not getting worse further. well, I am still tapering down those SSRIs and Psych meds very very slowly now. But I am thinking and thinking if mega dose antibiotic starts working on the root of this illness, nothing can stop it to impove further, right? So it should keep forward more or less? Maybe something is caused by his long term SSRIS and Psych meds? it built up a "not good" some balance in his body and now it's unbalanced???? For those meds the reason we feared to get rid of them in the past years was just b/c his mouth biting, cheek biting. It was sooooooooooooo bad, there was always a big ulcer (just smaller a little bit than a dime)in his mouth, sometimes on his tongue..... When we started him SSRIs med first time many years ago, just 1/4 tablet(about 5mg), he told us he did not want to bite any more right after taking it several hours. From then on, we were on SSRIs board.......... Afterward, we've never seen that kind of helps any more. It did had some help, just some, not good enough, higher dose would make him so bad in his mood. he asks repeatly " is it OK, is it OK, doesn't it matter, doesn't it matter" in the morning for school, We have to answer " it doesn't matter!", anything more we answer would be not good for him. Is it a OCD? Anykids here have mouth opening? Thanks, Jack My son has been "jaw popping" and "teeth grinding".

I just watched it. I would have liked to have more Trifiletti and have more credibility given to him (i.e., number of kids he's seen, differential to other OCD or tic disorders, time spent researching this topic)... but it came across fine. Hoping that the family gets some downtime -- I can't even imagine how tiring this must be -- Buster I completely agree!! I wasnt able to find Dr. Nacy on MSNBC- I guess I dont have the channel. Does anyone know how I can find the clip from 12:30? Thanks!

They test for group B while you are pregant- she had group A in her vagina. Now My son now has Group B in his throat. This is so confusing

Thank you, Thank you, Thank you

I forgot to add this to my last post- Thank you so much for the link. I never really thought about the RF- I guess because he doesnt have the typical polyarthritis like I had when I had RF. I do not believe the cough is a tic- he has had vocal tics in the past- this sounds very real- like croup! I will definately ask the immunologist what she thinks and if there are RF tests we can do. Thank you so much for your help and concern!

I forgot to put this is my last post- I actually got Rhuematic Fever from the same Strep stand that caused his FIRST PANDAS episode. VERY painful shoulder and wrist pain. I am going to try to get immunologist to do the test- I am not very happy with the ped. right now. She thought I was crazy for suggesting antibiotics pre-surgery (the ENT refused as well) even though I suspected strep again. Good thing she tested him - even though she only did it because I demanded it. Thanks again.

Thanks everyone for your responses. to answer some of the question: He was given Clindamycin 150 mg 3X daily to treat. No, he hasn't shown any other symptoms, no rash, swollen glands, etc. I will be keeping a close eye on him though! His legs have been sore, not his typical knee pain that he gets with infections (one of his common PANDAS symptoms) - this is completely different. Other than that there are no other signs of reoccurring HSP- this is something I fear as much as PANDAS symptoms- I am always on the "lookout". He has only had it once- it was horrible- swollen sore feet (couldnt walk), rash, extreme stomach pain that sent us rushing to hospital- thank goodness he only had a small amount of protein/blood in urine- it did not cause perminant kidney damage- but we were all so scared- I had never seen him in that much pain. Even though the Dr. said he could still have the surgery, I decided to postpone it until Spring- thanks for all of the advice! I agree- his body needs a break! Also, I plan calling his Immunologist and request all of the blood work that was suggested- Do you think the antibiotics will effect results? Still havent gotten any answers from CDC. This is kind of scary. Thanks again for the support!

My son had a group A strep infection in the beginning of November. His PANDAS symptoms lasted around 2 weeks and then went away (for the most part). One week after remission his PANDAS symptoms came back FULL force. A week or two later- I took him back to ped. (Last Thursday- 5 days ago) "something, is still not right. His behaviors and tics are back" I think he may still have a strep infection and I would like an antibiotic before surgery". She assured me "no way possible for him to have another strep infection, he just finished 10 days augmentin. I will not over prescibe antibiotics, why do you want antibiotics before surgery when he clearly doesnt have an infection?" I demanded another culture. After leaving her office, I began thinking "maybe she is right, maybe he doesnt need antibiotics before, maybe I am just a crazy paranoid mom, maybe his behavior is just a result of the vaccine a few days ago." Since then His PANDAS symptoms have decreased greatly - but has gained the cough and leg pains. I am kind of worried about this- the last time his PANDAS symptoms decreased at the SAME his Physical illness increased- he developed HSP. It was like the antibodies left his brain and then attacked his blood vessels. Has anyone experienced this? I am sure he will be fine- I just don't have any faith in dr's anymore

Just a few hours ago I responded to the post about vaccines and symptoms exaccerbations. Well now I know it was not because of vaccine. But because of Group B strep throat. (He has had 2 group A strep infections and now 1 group B strep in 3 months) I do not understand what this means, so I call: His Infectious Disease Dr.- she just read something out of a book and didnt even answer my questions "sorry, I couldn't help" CDC- passed me to 3 different people- untill they finally said "I will have a specialist call you back within 24 hours, I am not able to find any of your answers" ENT- " i will have to get back to you" So......once again, no help from doctors. Maybe someone here can help. 1) What is the difference between Group B strep and Group A strep? 2) His legs have been hurting the last few days, sometimes so badly that he has to sit and feels like he can't walk. He has also developed a "seal like " cough. Could this be related? 3) He is scheduled for a tonsilectomy on Thursday, does this need to be canceled because of the risk of Group B in his bloodstream? (His ENT has not even anwered this question yet- "I will get back to you") Any responses would be greatly appreciated. Thanks

My son (age 6) had a strep infection in the beginning of November. His PANDAS symptoms lasted around 2 weeks and then went away (for the most part). My daughter had the H1N1 a few weeks prior and it was horrible- In fear my son would get it, I gave the vaccine to my son (about 1 week after symptoms remission and 3 weeks after Strep). Within 2 days of the vaccine, his PANDAS symptoms came back FULL force. I am not sure if this was caused by the vaccine, the strep or a result of both. ???????? He had 2 more very hard weeks of Anxiety and Rage attacks, constant crying, regression in hand writing, and severe depression ("why do I feel like this? I am so sad and angry, make it go away") and confusion ("What did you say" "I do not understand" resulting in everyone repeating instructions and responses). Now his anxiety issues are finally "controllable" and his tics are at a minimum.

I like your list, what a great idea! I like some of the terms that were used in this list like ; fixation, insistence, inability and need. I also liked the the post (sorry, I cant remember who posted it and cant find it again), that mentioned the possible link between OCD and Tics for the sneezing girl. Dr. Swedo talked about this in the MIND institute conference. I also believe that some of my sons tics were first caused by OCD and vice-versa. Obsessive Compulsive Tendencies are very common and normal in children. It becomes a disorder when it interferes with their life. I hear people say all the time, "I am obsessed with......." or "I like to have things organized, because I am so OCD" I think the term "OCD" is used all the time in the wrong content. There is definitely a line between tendencies and a disorder.-I have also heard people say, "Ya, my son has OCD, he likes to line up his toys." Notice the words "likes to" instead of "HAS to"- Counting toys can be very Innocent, but if a toy becomes of of place and results in anxiety attacks and rages- sometimes lasting for HOURS, or the toys become "tainted" and can no longer be played with- those are just some examples of how it can become a disorder. These are some examples of my son OCD Excessive wiping Refusing to change clothes (for months at time) Fears that I (mom) was going to die- would keep him up all night crying Fears that a monster was going to get him, if alone, in our bathrooms at home or a public restroom- would rather pee/poop in pants (at stores, friends house, school) than to say outloud that he had to go to the bathroom- or to go by himself ( I guess monsters would hear him if he said it out loud Favorite color- had to wear the same Red PJs everyday, only color with red crayon (if the crayon would break it would result in crying for SEVERAL hours- only that particular red crayon would do) only swing on red swing (if someone was on it- he would have anxiety and once attacked the child) There are plenty more

My daughter had strep in her vagina several years ago. She had burning and inflammation. Her Dr. gave her a vaginal culture- it was positive. I found out a few days later, while talking to another mother (whose 2-3 year old son attended the same after school program as my daughter), she said her son's penis was red and had pus bubbles for several months, she said she just thought it was really bad diaper rash from his diapers he wore during the night and left it untreated- she finally took him to the Dr. a few days before. She started to laugh, "I just got the phone call this morning, it was STREP!!!" The mother still sent him to school that day like it wasn't a concern. My daughter most likely caught it from sharing the same toilet seat as the severely infected boy. (I called her Dr. ask asked if this was possible- "Absolutely", she said "she believes that to be the most common form of transmission") My daughters treatment was oral antibiotics- it cleared up completely within a few days. I do not think GYN check for this routinely, or at least I have never been. Hope this helps.

Strep is not the only thing that triggers the symptoms with my son- any infection, viral and bacterial infections. The strep can also be somewhere other than the troat- I am assuming that your strep test is a throat swab. (it can be in the sinus, intestines, skin, vagina, ect.)

Same here- did not help with his tics either.

I gave it to my son for the first time last week after reading this forum. I wasn't too hopeful and didn't tell anyone that I was trying it (did not want to get anyones hopes up). It was amazing, within a couple of hours my daughter and husband both came to me in excitement "he's Back! what happened?????" He was able to change his clothes (he was wearing the same clothes for 6 days) and he got into the car without any problem. I have been giving it to him every day for the last week- it doesn't take alway ALL of his symptoms but definately helps reduce the severity. I have only needed to give him 1 dose a day- late morning, early afternoon- school has been out, so he has been sleeping in- and relaxing at night. It did wear off one night and symptoms returned. He "lost it " running around house screaming and hitting people, throwing things, kicking and beating his head against the wall. It took about an hour to calm him down, ALL over a lego toy. I am so thankful for this website for informing me about Advil. I wish my doctor had told me about this years ago. I hope it continues to work for him. Good luck.

She seems to delete any posts that say anything about low ASO titers for sure.... Mine was one of them. Susan Same thing happened to me. I saw it one day and not the next, I think it is great that Beth is sharing her story with the public - I think it takes a lot of courage and commitment in becoming a spokes person and advocate at such a large level. I have to say that I am very happy that her book has raised a lot of interest, but I do have to agree with the previous posts. A spokes person should be as knowledgeable as possible and understand that all of the PANDAS kids are not exactly like Sammy. While Sammy's first episode lasted for over a year- My son was diagnosed with Strep and on antibiotics 2 days BEFORE his onset and lasted one month (that was almost 4 years ago) - and he continues to have exacerbations with every and ALL infections whether they are viral or bacteria- his ASO nor anti dnase levels have always showed negative even with positive cultures. I am very disappointed that posts are being deleted from facebook- I read the one about antibody tests not being used to rule out / confirm PANDAS- and I strongly agreed- now its gone.

She seems to delete any posts that say anything about low ASO titers for sure.... Mine was one of them. Susan Same thing happened to me. I saw it one day and not the next,