TracyRee

Thank you all so much for the thoughtful and informative replies! I'd never heard of an alphasmart and LOVE the idea of it. I'm afraid DS wouldn't accept using it as he has a lot of anxiety about being different, but it's definitely something to think about. I am going ahead with the evaluation tomorrow. should be really interesting! We applied for an IEP going into kindergarden and were denied as they didn't know what special help he would need at that time. He did great in kindergarten and I ended up agreeing that he didn't need an IEP. First grade was when things started to surface. The other kids handwriting improved, whereas DS still struggled. Spelling tests became more difficult as he can only spell phonically. He NEEDS and IEP for second grade and I absolutely dread the process

DS is almost 8 and going into 2nd grade. His teacher was concerned about his spelling, handwriting and reading. We tried to get an evaluation through school since Decemeber, but it never got done. (long frustrating story) DS has been diagnosed with Asperger's as well as pandas. I'm pretty sure he has dysgraphia, but don't know about dyslexia. Definitely possible. I found an evaluator to have it done independently. I want his evaluative done this summer so that we can get the IEP request in as soon as the new school year starts. The evaluator can do it this Tuesday!! (after trying to get it done for so long I jumped at the appointment!!) It occurred to me last night that DS's pandas may effect the results as he's in a bit of an exacerbation right now. Not MAJOR, but it's undeniable. (mouth wiping tic and some behavior stuff) He was on omnicef starting about a month ago and now on flagyl as he ended up with major diarrhea. Sooooo. Is it better to have the evaluation during a pandas exacerbation and possibly get inaccurate results saying he IS dyslexic and therefore have more pull in getting an IEP OR Wait until he's doing better (hopefully a month??), and get better results and avoid yet another diagnosis?? Opinions?

This is ds's first pandas exacerbation without a positive strep test. In the past it was always clear cut, OCD symptoms led to positive strep test and antibiotics made symptoms go away in a few days. We couldn't keep DS strep free even on daily antibiotics, so he had a t&a last summer. Hasn't had strep since About 2 weeks ago he started wiping his mouth with his tshirt compulsively. Every 5 seconds. His lips ended up raw and swollen and bleeding. Strep culture came back negative, but he ended up with a nasty virus a few days later with double ear infections and double pink eye. I got the mouth wiping under control by applying a thick layer of lanolin every 1/2 hour. He hated the feel of his shirt sticking to the lanolin, and the lanolin healed his lips, so he stopped after about 5 days. He's on cefdinir for the ear infections but his behavior if way out of control. This is new for us and I'm at a loss how to handle him and what to do to get him back. He's explosive and over the top emotional. He screams and shrieks and weeps all the time unless he's playing a video game. He's turning 8 in a few months. I've never seen him like this and don't know what to do. I'm giving omega 3's and probiotics daily. Does anyone have any advice?

Thanks all. We've decided to go with the intracapsular. I found a few studies that found that there is no higher rate of reinfection for intracapsular. Traditional tonsillectomy removes 98% of the tonsils, the intracapsular removes 95%. Our ent thinks the difference is negligible and going back in isms removing more is an opt in for the future (hopefully won't be needed).

Arg, stinking autocorrect. I should reread what I typed. Yes, it's intracapsular tonsillectomy. I'm torn I've heard of intracellular strep... but I've not heard of an intracellular tonsillectomy. Could you tell us more about this procedure? oops - OK - I found intracapsular tonsillectomy while googling. Still - this was the first time I've seen this. Here is an article that discusses some of the pros and cons... http://findarticles.com/p/articles/mi_m0BUM/is_8_83/ai_n6200960/

Am going the t&a route for my 6 year old pandas son. Saw the ent today and was told he does intracapsular tonsillectomies, which leave a bit of tonsil behind. I'm wondering if we'd be better off going with the standard procedure for a pandas child.

We've decided to go ahead with a t&a for my 6 yo pandas son. The ent we saw today prefers intracellular tonsillectomies. The concern is that this method leaves some tonsil tissue behind. I'm debating on asking him to do the more common method. Thoughts?

Thanks all. The visit went well, doc recommends tonsillectomy, antibiotics and ivig 3 months after tonsils out. Glad to have a plan at this point. He's been tested for lymes and mycoplasma in the past, but not bartonella.

Thanks everyone. I'll definitely get some good probiotics and see what he suggests for his gut/immune system.

I've been off the board for a while, buried in denial. Ds's pandas started when he was three with him suddenly compulsively urinating. We went three weeks not knowing what was going on, getting test after test. Found a little info on panacea and insisted he have a strep culture. Came back positive and his compulsion disappeared after 24 hours on antibiotics. A year went by and we were scared, but nothing happened. Then school started and strep infection after strep infection. He never had any more OCD behaviors, but he was a different child. Angry, full of anxiety, defiant. We put him on prophylactic antibiotics for about a year and saw no improvement. In December we decided to take him off antibiotics. We hadn't seen any OCD since onset and his behaviors weren't improving. We thought maybe the urinatiion thing was a fluke, that his other behaviors are all due to his Asperger's, even though they don't totally "fit" Since March, he's had four confirmed strep infections, we think five in total. We were still in denial. Just a kid that can't fight off strep. We were going along with our local pediatrician that knows nothing about pandas and trying course are course of antibiotics and considering tonsillectomy. Yesterday the compulsive urinatioin started again. He's running to the bathroom every minute or two. So I'm back. I'm accepting that he does in fact have pandas and it's time to get serious on getting him in remission. I wonder how much of his Asperger's is really pandas. Tomorrow we see his DAN doc that knows a bit about pandas. He's already written a script for 10 days of augmentin. Im considering asking for a steroid burst as well. Lots to catch up on and relearn.

pming you

I'm stopping DS's antibiotics. I'm terrified, but feel like we've tried everything we can and need to pursue attacking the YEAST. DS has been on abx since January after getting strep 4 times last winter. He hasn't had a full blown pandas episode with tics since he was 3, almost 3 years ago. We've had a terrible year, dealing with major aggression, defiance, chronic irritability. I'vve blamed pandas all this time. I think I've been wrong. I think it's yeast. He's been on Nystatin all year as well, but a very low dose. In January he had a thick white coating in his throat that we were scared was step but ended up beign yeast. I think he still has a yeast overgrowth in his body causing all these behaviors. AM I crazy to do this now, strep season and all? I just feel like I can't keep him on the antibiotics anymore unless he's actually got an infection. His body needs to get the yeast under control. I'm putting him on Olive Leaf Extract, Grapefruit seed extract (in addition to the Nystatin) and Vitamin C. Thoughts?

Thanks Vickie. We're not seeing any ocd, tics, not eating, self harm... we're seeing chronic irritability, hitting, zero eye contact, social behavior problems. All things that fit the Asperger's diagnosis. I guess what I'm asking is could all these things we've chalked up to Asperger's actually be pandas symptoms and therefore treatable? Without tics and ocd as symptoms, do we assume it's not pandas related problems?

thank you, id like to treat more aggresively. what do i ask for? higher dose of abx and what else?

DS was diagnosed with PANDAS when he was 3, almost 4. We couldn't have missed it as he had compulive urination that we couldn't figure out for 3 weeks. I heard about pandas and insisted on strep culture that came back positive. His compulsive urination completely subsided after 24 hours on antibiotics. Things were fine for about a year, then he started having behavior problems. In this year he'd had some major life changes, so behavior stuff was to be expected. May of that year we had a baby. August that same year he started preschool (3 hours a day in hopes of making the transition to kindergarten easier for him the next year. he was 5 and we were holding him back from kindy one year) the preschool was concerned about his behavior (lack of social awareness, self care skills...) long story short he was diagnosed with asperger's in march of this year. s the year has progressed, so has his "behaviors" (eye contact almost non existant, chronic irritability, hitting when frustrated) with the two diagnosis, i'm completely at a loss as to what things we can seek treatement fro and what we need to work on with behavioral therapy. i mean, most of it can be worked on with behavioral therapy, but the chronical irritability.... could that be pandas and we could be doing more for him as far as medical treatemt? how do i know how far i need to go with treating for pandas when he has all these aspergers traits as well?? as of now, he's been on a 200mg twice a week dose of azithromycin since january of this year. what else can i do for him? we're walkign on eggsshells and miss him terribly.

DS hasn't had any tics or ocd since diagnosis 2 years ago. (obsessive urination, positive strep test and behavior subsided after 24hrs on abx) He's been on low dose abx since january. 200mg 2x per week zithro. his behavior problems continue. Chronic irritabily, aggression, zero impulse control... he's been diagnosed with asperger's as well. i was wondering if we should be pursuing a steroid burst treatment to see if it helps. thoughts? I WANT MY LITTLE BOY BACK!!!

DS has a pandas diagnosis and is on 200mg azithromax twice a week. DS had a fever on Halloween and seems better now. DH is sick and had a positive strep culture yesterday. I called the doc to take DS in and DH couldn't understand why I was taking him in as he's not sick. When do you take them and when don't you??

Ds just truned 6, pandas onset at almost 4. He's been diagnosed with Asperger's as well. He's on 200mg zithromax twice a week. He's on a GFCF diet and gets probiotics, nystatin and a multi daily. We had two amazing weeks after starting the GFDF diet, then he came down with a cold and we're back at square one. Every time he gets sick we have months of irritability, tantrums, monologues, rages..... I had resigned myself to thinking this was just who he is and trying to cope, but those two weeks were astounding. He was a typical kid (except of course I think he's much better than "typical"). He was HAPPY, flexible, remorseful when he made mistakes, pretend played, inquistive about other's perspectives. I hadn't seen him like that before, but I knew that THAT was HIM, the real him that is hidden under all this pandas crap. Now that I know what he can be, I'm desperate to get him back. What can I do???

I've been over in the pandas section fro quite some time, we've known about DS's pandas since he was 3. He's almost 6 now and was diagnosed with Asperger's this March. We've finally wrapped our heads around it and are starting him on a GFDF diet to see if some of his symptoms lessen. We haven't talked to him about his Asperger's, just seems way to early/young. He's been asking why he has to be gfcf so I've told him things like to help his eczema and see if it helps him feel better. I hate making him be on a special diet. He's ok with it when it's just us, but he gets upset when he has to have special foods in a group. Not sure what I'm saying here besides hello, here we are and any btdt advice would be great. DS is starting Kindergarten ina few weeks..shuld be interesting.

I'm putting DS on a GFCG diet and removing all food dyes. I HATE pumping him full of the red dye in his azithromycin twice a week. How can I get it without it? I understand I can have it compounded, but I'd have to have it shipped to me that way. It expires so quickly I'd have to be having it shipped every week. Ideas?

Stealing your line if that's ok.

Thank you both. He's on zithro twice a week, so we'll see what happens. He's always come back with a positive rapid, so I don't know. The waiting stinks!

I hate this. I hate constantly worrying that every behavior is a symptom, that at any moment he could get worse. I hate wondering if his Asperger's was caused by his pandas. I hate wondering if he could be "cured" if could just figure it out. Wow, didn't see all that coming. Now to my question. How do you decide when to go to the doc and get a culture? When do you chalk it up to "within the range of normal" and just keep an eye out? DS had a few hours of weird bathroom behavior twice this weekend. His sudden onset ocd when this all started was compulsive urination, so it's on my radar. Saturday and Sunday he spent a few hours in the bathroom saying "I feel pee, I have to pee". Of course after the first go his bladder was empty so it was just him standing there trying and getting a few drops every once in while. We went to the doc today and they're checking his urine and sending off a throat culture (rapid came back negative) So I was curious what things trigger you to take them in for a culture?

Thank you all for the replies. I do think the diagnosis will help him in school, he'll get the understanding and support he'll need. It's so hard having that nagging feeling that maybe it's really all pandas and can get better.... deep down I don't think it is as there were red flags that we didn't know were red flags long before his pandas onset. i guess the pandas just worsens it as it's gotten so much more pronounced. or development makes it so that it can't be ignored (no more "he'll grow out of it") regardless, i just want him to be happy.

Thanks, I agree that their brains "wrap everything up in the same package in some way". That's what makes it hard to know which way to attack it.