ajcire

I hope that she doesn't lose sight over the real purpose of this and not just get caught up in her book sales now. I could not even begin to describe how happy I would be to see this all on Oprah but I would be even happier if someone's story also represented those who presented mild pandas and what mild pandas might look like in children. Mild might be the wrong word.. maybe my son isn't mild.. just that I am lucky his symptoms don't disrupt his daily life the way some children's symptoms do.

Thanks Vickie, maybe I will take a look at adding it and just not having it show. I would not have any big problems with having it show except that since my own husband is not on board with me on this yet, I know it would upset him. I think that because what I am dealing with is so mild (I am so grateful for that, don't get me wrong) it's just harder for him to get that there is a real problem. Actually I was thinking I wish I even had used a different username here but I can't figure out a way to change it.

Interesting... my non pandas daughter who is the one who is prone to strep in my house (she gets classic strep symptoms) has complained of tummyaches for several years. The peds keep telling me to just track her diet... see if it's connected to wheat or dairy. It's frustrating because I believe her when she says she has a tummyache but can't find any correlation to her diet. I know my husband and my dr. will think I am crazy if I suggest it could be the strep. This dr. does believe that my ds has pandas though so maybe...

I do hope that is just a glitch!

Is there any easy way to know if your child has too much yeast? I have no real reason to suspect my ds does but being he is on antibiotics and I know nothing about probiotics, which kind, where to get he hasn't been on any.. when we are home he takes an acidopholus chewable tablet in the middle of the day because I was thinking I need it to to not be near the morning or night when he takes the antibiotics? I have a bad feeling that I have totally messed up his system by not following some sort of plan ... the dr. never said anything.. when I asked about if there was something I should do to make sure his tummy was ok he just said to give him an acidopholus if I wanted.

I just read all that. She really is not addressing what anyone is saying about the low strep titers...althoughs she thanked everyone for the info..... I know she might feel like she can't confirm something she doesn't know first hand but it seems like she should know more than anyone not to rule out any ideas and not to trust doctors blindly on what they say. I know this sounds dumb but I can't comment because I haven't become a fan of her page because I really didn't want to have it on my facebook just yet because it is not something that I have talked about with many people other than a couple close friends and my immediate family which was more that they needed to know what was going on. I hope that wasn't sounding like I was being negative toward her. She sounds like an amazing woman... of course so do many of you. She is reminding me a bit of Jenny Mcarthy in her plight to get her autism info out their and how she helped her son. She of course had the advantage of fame before her plight though.

I don't know if my ds's little clothes quirks are related to anything or just a preference has but he won't sleep with socks (his feet are freezing) He also would cry that his clothes were sticking to him if they were the tight fitting kind... but it was mostly in the summer when he was hot that he would say that so it might have been that he didn't like feeling hot with clothes so tight on him.. not sure. Some nights he slept in just boxers because of it. I never gave it much thought though since it was not a significant problem and I figured he just liked certain fits of clothes better than others and he wanted looser pjs.

Gosh, Vickie, my ds says he heard us talking before he was born. Sometimes he makes us wonder!

Vickie, fortunately I think my son's substitutions were pretty typical. He said things like Lou instead of You... I was almost sad when some of them were fixed because some were cute... I know how frustrating the speech stuff can be though. My non pandas daughter also received speech for articulation and I feel they discharged her from it to soon and I have a feeling I will end up having to have her re-evaluated.

That gives me such an eerie feeling... That is definitely interesting and eerie...

Bubbasmom, don't even get me started on the school thing... he is now in second grade but I have been dealing with the fact that he is bored in school since preschool. When he was tested because of his articulation issue the psychologist at the time told me I would have my work cut out for me when he got to school and she was right.. Unfortunately our state does not recognize gifted.. If we lived in some other states he would actually have an IEP to meet his needs. I taught special ed and never thought I would feel this way but I am so angry that money is only going to that end of the spectrum of special needs. The psychologist told reminded me that gifted kids do have special needs... they just get nothing here to help with it. That said we have a good gifted program that doesn't start until 3rd grade. I have thought a lot about it and the problem is that I am not looking for him to be labeled gifted or to be pulled out for a period during the day a few times a week to a gifted program. Don't get me wrong, I am looking forward to hopefully that being something for him to enjoy if he qualifies next year but I want his academic needs to be met all day... of course that is not possible in the public school here and right now that is the only option for us. He's learning though and we did find that most frustrating year was kindergarten.. but it has gotten better and his teachers have been great at trying to challenge him while understanding who he is. I have never mentioned pandas to them because his pandas behaviorial issues and even tics don't present in school and I felt there was no advantage to me bringing it up right now. His first grade teacher did know I was thinking he had this because I was going through serious sleep issues with him that year and I did talk to her about it. Skipping him ahead was not an option for us he is already one of the younger in his grade and socially I think it would have been bad for him. Plus there are definitely things with writing skills he still needed to get... they break into reading groups so I feel ok with that but it's that he gets no challenge in math that frustrates him. Oh gosh, I said photogenic memory.. I meant photographic. He clearly doesn't get it from me That is too funny that your daughter can watch reruns in her head My son's teacher last year (first grade) told me she is convinced he has a photogenic memory. I don't believe he has that but his memory is crazy good when it comes to weird details that most people don't pay attention to. He would make a great witness to a crime.

I used 5hpt for sleep issues with my ds at the rec. of the dr I saw regarding the pandas. I don't know if it worked or not in that we had also started antibiotics at that time. Ds was having severe anxiety over sleeping alone at that point. He would wake up in the middle of the night crying until I went in and then he was able to go back to bed but this would go on multiple times a night. It got better but a few days before we saw a difference... I do believe it helped his overall mood and sleep issues although it was combined with the start of the antibiotic. We stopped because my dh was thinking it was curbing my ds's appetitie.. I do not believe it was. We gave it at night and not too high a dose. I might try it again at some point, more for mood since now we have gotten past the sleep issue. My ds called it his sleep medicine. I am not sure if some of why it helped was maybe just psychological in that he convinced himself he needed it to sleep for a while.. we ran out one night and he was very stressed over it.

Vickie, my pandas ds received speech services only from the time he was 3-4 for exactly that... a phonological disorder. He shows no trace of it now and for him it was a pretty quick fix. They said he was doing something called fronting I think? Vickie, not to be nosey- but how do you know its not related to PANDAS

My son's teacher last year (first grade) told me she is convinced he has a photogenic memory. I don't believe he has that but his memory is crazy good when it comes to weird details that most people don't pay attention to. He would make a great witness to a crime.

It is fascinating.... silly question...if we got rid of the pandas in my ds, would his intelligence be affected? That would frustrate him so being right now he thinks he knows everything

Yes, my ds is considered gifted. He was only tested because I needed him to be as part of a speech eval when I wanted him to get speech only for articulation. We already knew this before the testing obviously just from knowing and observing him but it was confirmed with a number. So much of him we have just written off as quirky due to his being so bright but now I do wonder how much of his quirky is really due to pandas.

Interesting.. I just got off the phone with my ped. office to ask if they had the H1N1 shot in. They don't... but have a list they put you on for when they get it. The nurse spit out the standard info but I could tell she was not in favor of it. I asked if the office was strictly recommending it because they have to... she was very careful with her words and just respit back the standard recommendation from the health department. She then said off the record she was not getting it for her kids.. I asked if she would if her child had asthma and she said one of them does have asthma and she is not getting the shot for her but she does struggle with that she is the one who will have made the decision if it ends up being a bad decision. So that didn't help. The pulmonologist is really pushing for it for my non pandas 2 year old asthma child..... I will say it one more time... It sucks having to be the mom and making these decisions.

I don't know though... despite my ds's eye contact issues and clearly wanting to jump out of his own skin at times we always said he was much more adult oriented than kid oriented. We attributed it to him being quirky bright and just not liking the kind of play other kids his age did..... now he most definitely chooses to go off and run with his friends but at school.. if given the choice of playing with the kids at indoor recess or being with the teacher..he would choose the teacher. Last year his teacher said when she saw him kinda of lost in the group she would call him over and give him a job to do for her which always made him feel more comfortable. Yet he has friends and doesn't strike anyone but his nervous mother as off.

That is definitely interesting... I don't think he would fall into that category though. It's not a total shutdown or anything and I wouldn't say he becomes mute about it. Anxious and uncomfortable, definitely.

Unless you are one of the ones that it affects badly of course... the news had a mother of a child very ill with h1n1 and he had no other known health issues... she said that she never thought she would be in the situation she is in now with her child although she still said that she knows that it what has happened to her child is not common and she said she still didn't know her feeling son the vaccines. I guess I just have in the back of my head that what if one of my kids gets the flu and for some reason they are one of the bad case scenerios..... it sucks being the mommy sometimes. I really do worry about my little one with asthma.. how do I not get him the vaccine but how do I inject with something that nobody really knows much about. It just sucks.

I guess the good news is I am pretty sure ds had it. The thing that is weird to me is that if it's so contagious why didn't anyone else in our house get it... I have 2 other kids.. meanwhile 30 kids in his grade (30 out of 120 kids) had the same thing... yet the teachers didn't get it either. It was in June. What scares me is that my 2 year old non pandas ds has asthma and the pulmonologist said he very strongly wants me to vaccinate him against the h1n1 when it is available for us... But I really really don't want to... .but my dh and the dr. are really pushing for it and I think I might have to on this. I finally did cave with him and get him the regular flu shot last month.

Vickie, that's why I am so frustrated that last year when I am pretty sure my pandas ds had it (30 kids in his grade were out with the exact symptoms of it) but the doctors weren't testing because symptoms weren't severe so now I don't know if ds had it or not. I didn't think about it much until the vaccine talk...... if they are short on vaccines, maybe they should have thought about that before and tested everyone when they had symptoms so that they could rule out giving them the vaccine... Although I saw a dr. on tv the other day whose son was getting over the swine flu and he said he was vaccinating him anyway because he didn't have enough proof that his son would still be immune to it. This might be a stupid question but is there a way to test our kids to see if they are already immune to this? Like if we suspect they already had it?

[ he has always had some positive characteristics of the spectrum - since very young(6mos) he's had an abnormally long and intense attention span - not age appropriate. never to the point that we can't pull him away, just what you'd marvel at being a great attention span. he has a fabulous "puzzle-mind" - always had great spatial visualization skills. he can work puzzles, legos, follow diagrams that you wouldn't think appropriate for his age. he learned to read early and at 5 is a fluent reader. his teacher says how she enjoys working math things with him b/c he just "gets" it - if flows and he doesn't struggle where most his age have to think it out. we've always seen these as strengths b/c they don't interfer with other functioning. Smarty Jones, that paragraph fully describes my ds. He never was into typical boy play.. much happier to do worksheets and puzzles. He was a fluent reader by 4..... but learned at 3. He is having trouble having to show all his work in math because he just gets it. I too look at it as his strengths. He too struggled socially... he just didn't like the other kids form of play. A psychologist told me that who is to say that my son's form of play is wrong.. if he enjoys workbooks and puzzles than who is to say he is the one not playing right. He too is great with legos but he just now is willing to create is own stuff... prior to now he wanted it exactly like the diagram.

The time he had strep with the pink eye was before we knew about pandas but in hindsight yes, he had sigs of pandas. This was when he was 4 years old. He had no sore throat, no obvious strep signs. The dr. decided to swab for no reason other than that he had pink eye... the dr. didn't seem shocked that it was positive so I wasn't either. She treated him like she would treat anyone with strep, a 10 day dose of antibiotics which cleared the pink eye as well... didn't need the drops. That year was the year that strep was rampant in my house... it was the first year that any of us had known strep. Prior to that my ds had eye blinking at the age of 2... dismissed as normal tic but at the age of 4, the same year as the pink eye and strep was the year my ds started with handwashing (not enough to affect his life but enough that I made not of it... if he washed before eating he had to rewash if he touched something before the food) and also the year he started hoarding garbage (wrappers, clothes tags)..we dismissed that as almost funny and just a phase because I didn't know any better and both the washing and the hoarding stopped almost as suddenly as it started. I wish I could remember if it stopped after he was on antibiotics for the strep but I really wasn't paying attention to that because I had no clue it was connected. He has now been positive for strep on many occassions... but never once had typical strep symptoms... never a sore throat. I didn't have my AHA pandas moment until he was 6 and started having sudden sleep anxiety combined with frequent urination right at the time that my daughter had strep... somehow something I typed into the computer brought me to pandas and I read it and just knew.

I see the mention of pink eye... my pandas ds had pink eye a few years ago and the dr. automatically checked him for strep.. sure enough, he had strep throat. She said sometimes they come together which was why she checked for the strep. Is that common?