ajcire

I used social stories all the time at work.... I used to teach children with autism and we found that it really helped some of them out a lot. I used a program that my district let me purchase but can't remember the name of it now. I didn't check this out so don't know how good or useful it is but it looked interesting and free.. http://www.adders.org/socialstories.htm

What kind of neurological issues do you see in your litle guy?

I know that when I pieced things together with my son, when things got bad 2 years ago... it was August. No idea why it was... last year it was starting ramp up in August as well. We tried to blame it on the idea of school starting too but I know it wasn't... So far so good though this year...

I thought uveitis was like arthritis in the eyes?

But if it's not contagious being a carrier is only an issue for the unborn child of the carrier right?

SFMom, what symptoms do you have for lyme?

SFMom, I don't remember as I haven't read through all past posts but what is it that led you to believe it is LD with your son?

I didn't have my son's cultured but when I had his out the ENT said they were "a shriveled up infected mess". He has had strep (without ever complaining of a sore throat) in the past but didn't meet the criteria for removal based on total number of strep in a certain period of time. I had an ENT who was also open to learning about pandas and he understood that also one reason he might not have had more positive strep cultures technically is because he had been on antibiotics for quite some time. He was happy to remove them for me on the pandas basis alone.... He told me that often the ones that are infected the most look small and ok when you look... but in fact they aren't really so small, just shriveled and squished... ick. Basically he said the same thing when he removed my daughters (she had documented strep with sore throats enough to meet the criteria).... that her tonsils looked small and ok but he suspected they would show lots of signs of infection..sure enough they did. Interesting on a side note is that my kids dentist asked me if my son got sick a lot... he really didn't that I know of... I mean obviously with the exception of pandas... but not colds and infections that I was aware of and he had been strep free for a while I thought.... she said that the buildup behind his front teeth could be genetic or was an indication of infections.... my daughters were that way but she said having strep throat a lot and colds would do it.... Will be interesting to see if she notices a difference at his next checkup in how much build up since having his tonsils out... They have no cavities and no other teeth issues...

GREAT!!

Good questions: My son is just about to turn 8. I do worry that many of you described your kids at 8 like I do mine but now years later things have progressed to more serious. I have lost plenty of sleep over worrying about this but realize without a crystal ball I will have to just take each day as it comes. I believe this all started very young for my son and the first concrete thing I can trace back to is when he was 2 and I brought him to the dr. one day when he woke up with a constant eye blink...which won't be a surprise for you to hear was diagnosed as a common childhood tic and I was told not to worry... I can go back even farther and tell you that there was always something a bit different even as a baby..quirky.. .that in the end was attributed to his brightness. I taught special ed (my class was children with autism) and while I saw some traits in him that sometimes made me nervous he was so clearly not on the spectrum. EAMOM, no we have not tried a steroid taper. I'm not really sure I am even comfortable with that at this point. I don't know why.. maybe I'm just afraid of what I will learn. I don't know. Would I do IVIG if it was free? I will definitely say that the cost plays a role in things for me... it was a big deal for me to get dh to agree to see a pandas dr. and double hard being it wasn't covered by insurance.... that said if my son was in a place that so many pandas children are I don't think that I would have to convince dh of anything. It's the fact that my son is totally functioning both at home and at school that makes this harder. If my son was going through the severe episodes so many children are I think this would be more clear cut. If he was not eating, it would be a no brainer that we had to do something. If he was unable to attend school, afterschool activities, have friends, we would of course be taking bigger actions. BUT since he is... I don't think we would be able to justify IVIG even if it was free. Just like Kimballot expressed... what if we did something that turned our fully functioning child into non functioning. What if the turning of pages brought us things worse than anything we have seen in him before. What if they didn't turn back. I too have it sitting in my head that we should accept nothing less than 100% but then I think, heck.. who is 100%. I mean we all have personality flaws, quirks, less than perfect qualities and it is what makes us who we are. I don't know. It definitely all scares me. I feel a little bit better that if something should take a sudden turn I at least will have an idea of where to start. I feel confident that it is pandas for my son, we did the cunningham test, we even had the high titers, we have the positive throat cultures... but there is even the what if I am totally wrong here thought too... yet deep down I do really feel strongly that this is pandas and we did see a neurologist who agreed.... but what if... what if I am just crazy.

So what do you do if your child is already being age appropriate but has minor pandas symptoms? It seems impossible to me to justify the use of IVIG for that when he's already at what would be considered a success rate for more serious pandas kids... not sure if I am making sense.

Tantrums...don't have much to offer but big hugs... hang in there.

I just might be the only person not totally irritated by her. Everything is biased. People's opinions on doctors here are biased to who helped them as well. I think that just as irritating as it is for us to see her say you need high titers and that antibiotics are the way to go, I kinda feel equally irritated hearing that IVIG is the only way to go. Each child's needs are individual. Clearly pandas is not one size fits all...

I feel the same way. My son is very mild. He functions just fine. Really at this point it seems you have to be his mother to see it but yes, it's there. I remember reading here how people wouldn't accept that because it's not 100%. From my understanding Dr. K believes that IVIG is the only way.. but there is no way I could justify it for him. He's not even currently on antibiotics. I am fully aware that things can change for us and am most definitely storing up all the information I can take in but at this point, I have to accept 90%. P Mom - I am totally with you... my son does fairly well between exacerbations... he is happy and functional. I understand that IVIG will not remove exacerabations... so I am having trouble justifying it in our case. I need to talk to the doc more about this. It seems IVIG is really helpful for families who cannot get their kids into remission otherwise... but if you are able to go into remission and be functional without IVIG... is there a point to the treatment? Will IVIG reduce the number of exacerbations he has? That would be a reason to try it... I am still somewhat on the fence in our case.

Hi, just curious why when he had strep it was not treated with antibiotics? How was it treated?

Ah, I hear ya. I can tell you though that at one point it wasn't really up to me.... I was told my class was to be run as a TEACCH class at one point and it didn't matter if I thought that was best for the kids in it... Doesn't sound like that's the issue you are having though Don't want to sidetrack this thread too much (too late for that, I suppose), but let me just say ABA has been the bane of my existence! Teachers who just refuse to try anything else, when that CLEARLY is not working make me very angry. But, they don't get the tolerance, because they should know better, are supposed to know better and have made it their life's calling to know better!!!

I wouldn't expect people to always change plans for me and you definitely can't always accomodate everyone but I would expect a level of sensitivity in discussing it with me as an adult and especially if it was someone discussing it with my child. I was a sped teacher in my past life but not sure what you mean peglem

I wouldn't go and eat salads only because I wouldn't want to spend time with someone who was so inconsiderate... It would be one thing if she said to you, "Are you sure you can't find something on the menu that will work for you?" but to say what she said... just not acceptable. I know you have had issues with your mom not being supportive but this would be the perfect moment for her to stand up and tell her that she's sorry she won't get to meet her boyfriend but she will be dining at pf changs with her daughter.

Here are my son's... I guess I never gave them a second thought despite them clearly being elevated just because nobody could tell me what significance they had. CamK 141 and I had his blood titers drawn the same say as the blood draw for the cunningham test and his ASO was 480... Anti-Lyso 640 RANGE (80-320) Anti-Tubulin 2000 (250-1000) Anti-Dopamine 1 2000 (500-2000) Anti-Dopamine 2 8000 (2000-16000)

Did you already start the gluten free diet? Could it be connected? I know nothing at all about that stuff so don't know, is there a period of withdrawal? I did realize that yesterday, he really hadn't had ANYTHING to drink since breakfast - and it was late afternoon! YIKES! I had to tell him to drink water and he downed an entire bottle after arguing that he wasn't thirsty. Won't make that mistake again Scary! He pretty much eats all day long, on the go in smaller amounts, so it didn't seem like a blood sugar issue. I have noticed that though at other times when he was in low eating mode. I may just give him the motrin tomorrow then if he still wakes up moody and see how that goes. I suppose it's certainly worth a try. Feeling SOOOO frustrated here! It just seems like our "superfast" diagnosis is doing nothing to help us

I'm afraid to even read it being I am now concerned about my child post anesthesia... (not autistic but clearly some immune type thing or I wouldn't be here)...

Awesome!!!! Can't wait to hear what Dr. Cunningham has to say!!!!!

Just placed my last vote.

Awww I hope your daughter finds relief too.

Melanie, is your daughter having night terrors too? My ENT will only give me them for the week... He was willing to prescribe them for a few days pre-op and one week post op. Anything more and I too would have to request it from the neurologist. I decided that we are going to hold our breath and hope. I had taken my son off prophylactic several months ago as well so he was on nothing until a few days pre-op. So far my son has been relatively mild with pandas so I guess maybe that's why I am taking a leap of faith here.... if he was more severe maybe I would be pushing for more antibiotics. Do you think just being on the antibiotics for the rest of the week is okay? My dd just her tonsils out last Thursday and they just gave her antibiotics for 7 days. I am scared that when she get off her tics will pick up. I thought you were supposed to be on them for at least a couple of months after surgery. Her ENT said that if I think she is having PANDAS issues I need to call her neuro. She won't prescribe anymore for her. Thanks for posting this about the nightmares. I have been fretting all this week because I thought it was maybe strep wreaking havoc again. Melanie