ajcire

That is definitely interesting... so was he treating pandas or lyme? Of is it possible that he thought he was treating lyme but he was treating pandas?

P.mom, thanks for that clarification. I was getting confused trying to figure out if people were saying lyme caused their kids pandas. I think we do have to be careful with misinformation and with trying to put puzzle pieces together that just don't fit. We all want to find answers and help our kids so it's easy to want to just jam the pieces together until they do fit.

Oops.. I missed that you were talking about your non pandas dd with the tonsils. Yeah, my non pandas kid had hers out before my pandas kid but it was easy because she had strep sooo many times within a short period of time that she met the criteria for it.

Sounds like a crazy week! When I talked to my ENT about my ds I explained that I had no idea how many times he would have had positive cultures if he wasn't on antibiotics so much... and that he had several positive cultures prior to the antibiotics but that was just the ones I caught because he didn't have typical sore throat signs. He told me he had taken them out for way less a reason than that so he would do it for my son for the reason I gave... he since told me after my son went in for his that he has had a few other pandas kids comes in for it... and this time at least he knew what it was... He took his computer out and googled when I first brought my son in. My son's tonsils were small... but when he took them out he said they were small because they were a shriveled up infected mess....

I have to ask.. if it's all just symptoms being treated and no real way to know if it's lyme or coinfections for those with negative tests, how do you REALLY know that is what you are treating? Isn't it possible you are treating some other infection or if you truly believe it's pandas for your child isn't it possible that the antibiotics are really just working for that? Has anyone gone to Dr. Jones and been told it was NOT lyme?

Ah.. I'm not far from Dr. T so thought I would check to see if your group was going to be local.

Are you located near Dr. T?

Out of all that, this stood out to me. What an awesome response he had for you.

Thanks Buster

Not sure if I am going to make sense or not but... If titers take time to rise... does that mean that when you are first seeing what you think is a problem that there is likely a current infection.. or if you didn't have evidence of a current infection and were going to just check titers (aware that titers don't tell the whole story) would you want to wait a few weeks out from the start to see a rise or by time you are seeing symptoms if your kid is a titer rising kid in the past would you suspect it would already have risen.. I hope that came out as clear on here as it did in my head.

I don't think anyone is suggesting one should ignore blood in the stool I consider my son to be doing very well (I started out giving this a percent but honestly, I don't even know how people come up with a percent) and I am satisfied with where he is at but it doesn't mean if he gets a splinter I don't not remove it.

I have been typing and deleting fully aware I shouldn't post to this but what I got out of Faith's post goes back to a time when sfmom referred to getting our children back to 100%. Sure people will say they didn't go do ivig just because of something they read here but those posts play on people's emotions and fears. I remember reading it and taking from it that if I didn't try ivig I was not giving my child 100%. Is that what sfmom meant to say? Maybe not. In fact, my child is so very mild that I remember asking what about a kid like my kid and the response I got was basically that a good mother would not accept anything less than 100% and that I would see differences I didn't even realize were pandas related after ivig. (Yes, not in so many words but that was the gist of it). I think the frustration comes not because sfmom is looking into lyme or even talking about it but more because she had 100% confidence in ivig and didn't hold back on suggesting it was the only route to go for a cure. I know it would be foolish to make a decision based on a message board but take a tired worn out parent who doesn't know what else to do... now watch them spend $10,000 (or more from what I am understanding) on IVIG only to find out that well, it might have worked better if...... YES, medicine changes all the time, when we know better we do better but I think it's important than to not post our believes with such conviction when the reality is that nobody really knows. I was very appreciative of some lyme suggestions I received from Lymemom at one point regarding myself. Where I live, lyme is certainly a real threat. I feel confident that I don't have lyme but I definitely appreciated the advice and I most definitely took advantage of her wealth of information and used it to help me ask questions to a dr. I put my trust in. Lyme information being given itself is not the concern.

I was just googling around and saw this below and was curious if anyone had done the anne connolly test. I never heard of it before. http://www.chicagonow.com/blogs/fighting-autism-and-winning/2010/05/autism-is-often-a-misdiagnosed-and-sometimes-life-threatening-medical-condition.html

Ours is exactly what was described, the yellow covering that looks like it's the result of not brushing but it's not... My dentist really just told me to leave it and let her take care of it when he goes in.. He is 8 and has no cavities and says his teeth are healthy.. His was from liquid antibiotics.

We have this issue with my son even on short term antibiotics...I brought him to our pediatric dentist all upset about it and she said his teeth were fine and she cleaned it right up.. said it wasn't something brushing at home could take care of but when she used her brush it cleaned right up. His teeth were cleaned and then he wasn't even onl long term antibiotics anymore but had his tonsils out so he was on them for 2 weeks and the discoloration was back... but now I feel better knowing I didn't permanently destroy his teeth. I have noticed with azith and amox.

Ok, that to me would be a fight worth fighting.... for an aide. It might be worth a call into a lawyer who specializes in education... I don't know the laws about nurses for children with special health needs and who is responsible for what but when I subbed prior to teaching I subbed in a few classes where students travelled with nurses for various reasons. They were in special ed classes but that is because the health issue was not their only issue.

Thanks for taking the time to answer my questions. Had you done the western blot in the past without it showing anything? Do you suspect you have had it even longer and that it is related to your son's issues (I remember you posting about that in the past). I don't remember, have you had the igenex done on Lauren or is it something that has to wait a certain amount of time from the ivig? I hope the herxing is just a quick temporary phase for you and that you find the healing you are searching for.

Have you considered trying to get a one on one for her? I would not expect my school to allow me to sit in on the class but I would expect them to find a way for my child to have an appropriate education potentially through having a trained one-on-one. If a child had epilepsy my guess is they would travel with a nurse if necessary.

laurenjohnsonsmom, what are your symptoms of lyme? What made you look into it? I see SFmom said that ivig is not the solution for lyme but rather a means to give some relief with co-infections. Did you try the antibiotic regimine for the lyme first or are you going straight to the ivig? If you don't mind my asking, were you able to get your insurance to cover ivig for lyme? Have you been seeing a lyme specialist as well?

My ds had frequent nose bleeds too but I didn't mention it.... I have lots of friends with non pandas kids who also had/have frequent nose bleeds so I didn't consider it someting related.

I didn't mean to suggest I thought she belonged in special ed or that it was ok for a teacher to react that way.... just was suggesting that it could be more out of fear than anything that the teacher responded that way. I know how nerve wracking observations can be and feeling like you are being observed every day when you are not used to it could just have her not knowing how to handle it. I am not defending her actions. Just if she realizes that it's not her being watched and that you are just there for your daughters safety it might put her more at ease.

Of course a teacher doesn't just get to decide which child get special education. It's definitely not that simple. The teacher never should have approached you about it in that way.... I really would go in with a bit of compassion for the teacher rather than angry. I know that sounds crazy but it has got to be a very difficult situation for a teacher to have the same parent in the room on a daily basis. I mean my kids have pretty open classrooms and the teachers have always welcomed us in for anything but that is different than if we sat down every day and watched. I know fantastic teachers who would still be a bit rattled by this and whom it would take some getting used to for. I imagine it also can be difficult for some students as well. I would try it from the point of view of "I know this is an unusual situation and I understand it can be uncomfortable for you but...." Then you can be clear and direct about what you want and expect without attacking the teacher or writing it off as she just doesn't want to deal with your child. I taught special ed and while I was confident in what I was doing in my classroom, it still made me a little nervous when parents were in (not for parties but while teaching)

Thanks!

So the frequent urination was not the exacerbation but just part of it right? Meaning it wasn't the only symptom at the time right?

If your child had the issue of frequent urination or frequent urge to (without actually always going) did it go away on it's own or did it go away as the result of antibiotics? If it just went away was it after a long time or a relatively short lived problem? If this was in hindsight the first major sign of pandas for your child how long was it before you started seeing other symptoms?