P_Mom

Maybe she did say choreiform movements..not chorea. This was a couple of years ago. We go see her on the 20th this month. I'll double check. I have no doubt you are right, though. Thanks for clearing that up. (because she did say my kids had "those" movements in their hands...so, I was thinking chorea and thinking...Yikes...they say chorea= no PANDAS) My mistake.

If you can't have chorea with PANDAS.......what causes the piano playing fingers so many PANDAS kids have? I thought that was considered chorea? Atleast that is what Dr. Latimer told me. Okay...confused.

FR88, Glad you are back on! I just wanted to mention that there are several strains of mycoplasma. Not all are carried by ticks. The one we refer to here (and the one you most likely had) is Mycoplasma pneumonia...(walking pneumonia). I am not sure if this strain is carried by ticks, but, even if it is, your chances of getting it from human contact is MUCH more likely than getting via a tick. M. pneumonia is commonly spread human to human. Don't get worried about Lyme based just on the fact you had Mycoplasma. And, you are very wise to be asking questions and being skeptical of the Lyme testing.

Don't mind a bit! I encourage you to keep speaking up... I will. FR88....I am marked....just watch closely.

Melinda, Then, by all means, if it is working....stick with it! (whatever the cause) best wishes! kelly

FR88!!! Please don't let yourself be pushed off the forum! YOU were not being at all disresepctful. Disrespect is when others can't take or accept other people's views or opinions. I know...I have experienced it first hand. If you disagree or question anything Lyme...you are marked and you better watch out! We have lost so many great PANDAS posters because of this. It is really tragic. I almost left, too. But, I will keep fighting for PANDAS and sharing my opinions and points of view....regardless of who likes it or not. We can't let it become one-sided,SPEAK UP.....please keep sharing your experiences. We all need insight from someone who has been there!

This is EXACTLY what I was told 3 years ago with my positive IGM and negative IGG. 3 years later, and, after 2 years of intensive antibiotic treatment (including IV), I continue to test IGM positive and IGG negative. It has FINALLY been determined I never had Lyme and will most like test positive IGM forever. Just something cross-reacting. (they suspect EBV) It happens a lot with IGM. I was positive even by CDC standards.....with all 3 "specific" Lyme bands positive. Just letting people be aware there IS another side to this. Please be careful. Thanks Pmom! I appreciate your side as well! All I can say, is after 22 months since this last episode began, I am finally seeing real results. But honestly, I do like hearing all opinions. So what do you make of my daughter's positive Quest RMSF? (I'm asking this in true honesty...not sarcasm) --Thanks- Melinda Melinda, I have no experience with RMSF, so, I can't give you any answers. From what I read, though, most people become hospitalized from RMSF......was there a time when your child was severly ill? (not talking tics or ocd...I mean severely ill that she had to be hospitalized?) Anyway, I don't know if it is possible to have RMSF and never know it....perhaps.....like I said...don't know much about it. But, given the inaccuracies of tests these days...I would probably get a second opinion, maybe even a third, on the RMSF thing......and I would go to someone neutral who doesn't see tick borne disease automatically. And I am glad your daughter is doing better.....regardless!

FR88!!! Please don't let yourself be pushed off the forum! YOU were not being at all disresepctful. Disrespect is when others can't take or accept other people's views or opinions. I know...I have experienced it first hand. If you disagree or question anything Lyme...you are marked and you better watch out! We have lost so many great PANDAS posters because of this. It is really tragic. I almost left, too. But, I will keep fighting for PANDAS and sharing my opinions and points of view....regardless of who likes it or not. We can't let it become one-sided,SPEAK UP.....please keep sharing your experiences. We all need insight from someone who has been there!

This is EXACTLY what I was told 3 years ago with my positive IGM and negative IGG. 3 years later, and, after 2 years of intensive antibiotic treatment (including IV), I continue to test IGM positive and IGG negative. It has FINALLY been determined I never had Lyme and will most like test positive IGM forever. Just something cross-reacting. (they suspect EBV) It happens a lot with IGM. I was positive even by CDC standards.....with all 3 "specific" Lyme bands positive. Just letting people be aware there IS another side to this. Please be careful.

This is absolutely true. My son (older son) never reacted to any of his vaccines prior to his sudden onset of stuttering post Kindergarten shots.......and he had received numerous vaccines before reacting.

We do, too. Pass. We actually pass on all shots now.

Okay...got 2 books today..."It's Not The Stork" and "It's Perfectly Normal". Oh my! Starting with "It's not the stork" tonight for both boys (8 and 11). The book is for ages 4 and up!! Wow! Not sure about that.....gives a pretty decent account of things. I didn't get the middle book yet. But, I know I won't be sharing it with my younger son...my older son...hopefully. The last book "It's perfectly normal" for ages 10 and up....wow...no way. I can't share all that stuff with him yet. Those ages are much too low ( in my opinion) Maybe I am just being naive. But, atleast I am starting tonight. I expect my older son to hide under the pillows and my younger son to be amazed and asking all kinds of questions. Oh geez...someone tell me they won't obsess about "men putting their penis into a woman's vagina!" Am I even gonna be able to read that part to them? On a side note: I threw away half of an Augmentin 500 last night and felt like I was throwing away gold! Anyone relate? Also, I just noticed today my younger son had thrown away a ripped pair of undies he has. They are cute boxers that got ripped while the boys were rough-housing. This happened two years ago (the exact same thing)....and he threw a fit and cried for about an hour over the ripped boxers and would not throw them away. He insisted I keep them and fix them. Another good sign! Thrown away boxers!

Eljomom.... we have settled on Dr. Latimer.

There is considerable debate from certain neurologists at Johns Hopkins (and somewhat at Yale) whether kids with tics must also have sudden onset and debilitating OCD to be considered part of the "syndrome".

Jill, My older son has a healthy s. pneumonia response (passing all 7 vaxed for with flying colors and then even having more strains covered)....my younger sons was considered a bit weak,(had a response to all 7 vaxed for ,but, numbers on the lower end...also has some others present that he wasn't vaxed for) but he is still acceptable. This is why their immunologist isn't concerned at this point about their lowish IGG and IGA. We track every 6 months for now. We also had other vaccine responses tested for. Chicken pox, rubella, pertussis, diptheria, tetnus....they both had protective antibodies to everything tested for. Both of them had a high response to Rubella, which is interesting to me...I wonder if this Rubella viral antibody could be a problem?? My younger son never even got the booster shots (thank God) and his rubella is still high. (and all his other levels are good...so, he didn't even need the booster) The Pertussis for both was high, but, they had both contracted Pertussis a month or so before tested...so, that was to be expected. They were both fully vaxed as babies and should not have contracted Pertussis...but they both did. Perhaps had we checked before, they may have had no Pertussis response. Who knows. Either way, their bodies responded normally to the Pertussis and made more than enough antibodies to defeat the illness. They will always have Pertussis antiboidies now. I spoke with Dr. Latimer and she said she is seeing kids getting Pertussis more often. She thinks the vaccine (the Pertusis part) could be a failure. Again, who knows. Neither son over produced strep antibodies...they rose with infection, but, never got really high like some on here. The highest we were able to catch was a 185 ASO in my older son. His baseline is about 70-80. My younger sons highest was 103...his baseline is about 20. But, we never got a draw in exacerbation...we know those valued would have been higher, but, based on where they were 3 months after strep, we don't think they ever got crazy high.

Hi! Well...my advice would be to ..yes, run some labs now so you can have a baseline to compare with other draws. Also....I would do everything I could to get him on antibiotics until your appointment. I would not wait until April. It is too risky. Another strep infection can occur....symptoms can worsen and be harder to eradicate, etc. The sooner you get PANDAS treated, the better. I had both my sons on antibiotics before their official PANDAS diagnosis. I believe the early intervention they had is the reason they are doing so well today. Every kid is different. So, get some basic labs done (remember......negative titers DO NOT rule out PANDAS)....then get you hands on some antibiotics. Also, a good thing to do would be to get him rechecked/cultured for strep after the antibiotics have finished to make sure the strep is eradicated. 250 mg 3 x a day of Amox. for an 11 year old seems insufficient to me when dealing with PANDAS. Hope this helps. Kelly

Thanks everyone! It really helps. I ended up getting all the books mentioned 'cause I couldn't make up my mind! So, I'll have them on hand when we are done with them if anybody needs them! We are Christian, so, I liked the Christian based books....however, I am not sure if they will lead to my son feeling guilty or afraid about things....soooo, I got them all and will blend them together.....taking points from each book. Yikes. I hope it goes well. We will start when all books have arrived (about a week)...then my husband and I will review them and then read them together with him the parts we feel are good and necessary at this point. I want to read it with him because I want the lines of communication open and to get him to feel comfortable talking with things like that with us openly. If I just put the books in his room to read...well, he may not feel comfortable openly talking with us... and, I don't want that to happen. Good point about not being in PANDAS episode. The son I am referring to is my older son.....he has always been a mild case with no ocd, anxiety, etc....just tics. He has been symptom free since June....so, we are in a good place with him. Now, my younger son might be a different story. He is eight....maybe I'll start with him the stork book when it comes. I think I waited too long with my older son. But, better late than never. Oh, the searches I referred to....just pictures of women in the buff.....he did not search sex, so, I think we are good with that. Happy New Year everyone!

I just ordered the 3 series of books mentioned....'It's not the stork", etc. Yes, probably starting out with books he will know everything about, but, yikes! I just want to cover all bases. I don't know how, but, my son came over to me and said, as I was clicking 'order', that he will never read the books! ! I don't know how he saw what I was looking at...that kid has hawk eyes! I am getting them anyway and leaving them one by one in his room. Why does this freak me out???? DcMom...I tried to pm you. In box full. I'd like to chat. make room?????

Thanks, Everyone. Yes, I know I am way overdue with my son. He is a mature 11 year old. Should have done it years ago. As far as the OCD stuff...I understand, and thanks. However, my older son has never displayed any OCD tendencies, so, I think we are ok with that part. When he was confronted with what my husband found.....he began to sob. My huband and I tried repeatedly (probably too much) to tell him it was okay and normal for him to be curious. In no way did we make him feel like he did something wrong. But, he sobbed and said he "felt stupid" for doing it. He was embarrassed. I felt so bad. So, we for sure have to do something soon. I agree he probably knows more than we think. I don't think he knows the basics (if we are talking sex).....he has never done anything or shown any interest in girls (although I deal with my share of phone calls/prank calls from girls for him almost weekly) But, for sure he knows something and is curious. Am I being naive? My husband tried to talk with him a bit, and he just hid his head under the pillow. Atleast he was listening. When I mentioned some books he could read...he got defensive and said "no". I like the idea of kinda making it informal like Dc mom said. Maybe if I just get a book or two and leave it on his nightstand? Then, my husband and I could bring thhings up slowly and sporadicallY? Jill...I know every episode of Spongebob. (not of my choice) Both boys still watch it........my husband, too. If it is on.........can't escape it. Oh my...just realized how pitiful I am. My husband just told me that when he was telling my older son that it was normal and that all boys are curious and do stuff like that...my younger, just turned 8 in Oct., son, piped up and said "yeah...I did that before, Dad."

Well, I am in need of some advice/direction/experiences. This is unrelated to PANDAS, but, this is the largest source of info. from parents that I have....so, I thought I could ask here. I hope you guys don't mind. My older son, 11, is obviously in need of the "talk." We found some Google searches on history of the computer that let us know, for sure, he is interested in the opposite sex and all that goes with it. Thankfully, he didn't see too much and now my boys have their own access to the computer that is very limited. They can no longer log onto our regular account and do any random searches. I should have done that sooner. This is new to me...I don't know what to say...how much to tell him at this point, etc. And, how much do I tell him about his own body "happenings?" After these searches...he complained of a stomach ache. I didn't tell him what it was likely from. Should have I? help! Any advice? Any good books to recommend? How did those that went through it handle it?

Emerson, No words can express how sorry I am for your friend, her family, and for all those who loved her. No words can make you feel better right now. I had a good friend commit suicide on New Years Eve, 1999. (Y2K) One of my brother's friends also committed suicide a couple of years ago. It is so sad and tragic. I am here if you want to talk....just pm me. Prayers go out. Kelly

http://www.oumedicine.com/workfiles/College%20of%20Medicine/OU%20Medicine/COM-OU_Medicine-Spring-2009.pdf

Seems okay to me. (given her age and weight)