peglem

I think insofar as PANDAS interferes with normal development, it can cause autism. However, the thing I have been thinking about with the CamK scores is that they don't know if or what other things might also cause increased activity. This is as far as I know...hope somebody will correct me if that's wrong. Especially with the 11yo, who has some other health issues- I'd wonder if those are related, or if they stem from the same cause or what...It definitely complicates the clinical presentation. How did the boys do with the antibody tests (anti-lyso, anti-tubulin, D1, D2?)

My son has been "jaw popping" and "teeth grinding". Has your son been doing "jaw popping" and "teeth grinding" always or it comes and goes? Have you found the solution? My daughter did have a jaw popping thing @ six years ago, looked like she was trying to unblock ears from a change in altitude. Just a few years ago she had this thing where she's open her mouth and flutter her eyes at the same time. Not sure if it was a tick or some type of seizure. It did go away when we started lamictal.

Oh, yes! I wouldn't try this w/o any idea what the effect would be. Good point, WD!

No need to apologize! It is so frustrating when we know our kids are struggling and suffering and we NEED the help of a physician, but they won't help, or don't even recognize the problem. What's the big deal @ doing a rapid strep test? Now if he does have strep it'll have to wait before you start abx...I get why you're upset. I've been there many times!

We have a trip in January from Phoenix to Maryland. (to see dr. Latimer). We just saw the psychiatrist yesterday and she prescribed diazepam (valium) for the flight. Well sort of, my daughter already had an "as needed" prescription for the 5mg tablets- but this prescription amount was for when she was about 1/2 the size she is now, so we let her know that the 5 mg. wasn't gonna cut it! When my daughter goes to the dentist the dentist prescribes 30mg, 20 for before the appointment, and another ten to use in case the 20 isn't working well enough. So we know already the effects of the higher dose for her. So the psychiatrist made the new script for 10mg tablets and told us to experiment on the weekends with dosage to make sure it will be effective the day of the flight. If we lived closer, I'd drive...Anyway, talk to the doctor about it.

LOTS of doctors and specialists do not think strep is a problem unless you are showing signs of infection...

I'd take him to urgent care and get a strep swab done there. I think 11 days after abx is not too soon to get a + result. (we've gotten them as early as 3 days out).

His anxiety/tantrums are a red flag, in my opinion. Suggest you look here to see if your son has some unrecognized OCD. http://www.latitudes.org/forums/index.php?showtopic=6133 Dx criteria from the NIMH site: Q. What are the diagnostic criteria for PANDAS? A. They are: 1. Presence of Obsessive-compulsive disorder and/or a tic disorder 2. Pediatric onset of symptoms (age 3 years to puberty) 3. Episodic course of symptom severity 4. Association with group A Beta-hemolytic streptococcal infection (a positive throat culture for strep. or history of Scarlet Fever.) 5. Association with neurological abnormalities (motoric hyperactivity, or adventitious movements, such as choreiform movements) But here is a better guide, developed by parents on this forum: http://www.latitudes.org/forums/index.php?showtopic=6142 Hope that helps. Its lots of reading, but very helpful. Any further questions you have, feel free to post. We'll help as much as we can!

Thanks, part of my problem is that I really don't know how things work and what can be done. Both Allie's pediatrician and the referring rheumatologist have spoken to Dr. Latimer, particularly about her Cunningham results. Per the rheumatologist, she found my daughter's score to be "very impressive". My daughter's pediatrician is completely cooperative- well he goes beyond cooperative, so that helps. But, I don't see how I can insist that they schedule a procedure before Dr. Latimer has examined my daughter to determine if she needs it or not. Faith told me that Dr. Latimer no longer does phone consults because they became too much to deal with. I think she may make an exception for Allie's doctor, because of the high CamK - 242%, which actually puts my daughter in the SC range.

I talked to Faith (I think that was her name, not Andrea anyway) and asked if we would be able to do plasmapheresis during the same trip, if Dr. L recommended that treatment. She said we'd have to return for that because arrangements would have to be made at the treating facility. But, my daughter's ped. is contacting Latimer to find out what bloodwork she wants done in advance so we can have that all done before we get there. The local immunologist said he will do IVIG for us on Dr. Latimer's recommendation, and he also said he thought my pediatrician has people he can work with to get the plasmapheresis done locally as well. I haven't talked to the pediatrician yet this week, so not sure if that's true or not. (the immuno had been discussing with the ped, so possible!) I don't know anything about "fast tracking" this, and the person i spoke with at Dr. L's office seemed to not be especially appreciative of the distance we are traveling just to get there for this...but maybe I read her wrong. I don't want to call and bug them again with questions, but I do really need to know- if we're making airplane reservations, it'll be really hard to change plans once that happens.

Benedril would almost guarantee a meltdown! A bloody mary would be great for me! I've talked with the very nice people at the US Dept. of Transportation, disability rights unit- They said i should bring a note from her physician stating that she is capable of completing the flight w/o medical assistance and explaining the effects of the sedative.

So we have an appointment with Dr. Latimer in January. After checking out all the transportation options, flying really seems like the only option. The trip is 2500 miles one way! The psychiatrist has prescribed valium for sedation, but we are still afraid of "breakthrough" panic attacks-fight or flight episodes. We do not want a nationally advertised flight incident! Any ideas for this? Anyone done this?

How nice of Lynn to keep us updated. Didn't catch inside edition- but here's the writen version: http://www.insideedition.com/news.aspx?storyId=3726 from there:

We sort of suspected PANDAS- All we had at that point was the NIMH website. What we knew was whenever my daughter's behavior would worsen, she would test + for strep. The surgery did not cause PANDAS. The exacerbation was most likely because we were unaware of her carrier status, and did not use abx beyond 10 days recovery. The resulting exacerbation was extreme, and she continued to test positive when her behavior worsens.. She may have fewer sinus infections, but we started prophylactic abx @ 4 months later-

Well, anyway, too late to put them back!

It sounds like the Doris Rapp allergy test. I saw her speak once (years ago) and she demonstrated this with, hmmm, a can of soda(?) and a member of the audience. Then she did this thing with pushing gently upwards on the ethmoid sinus area, and after that the soda didn't weaken? Okay, I just realized I'm probably not remembering this right! , but the testing strength of the arm while holding the food, that I remember for sure.

Glad it made you laugh, i had meant (sorta) for it to be funny!

I'm sorry I said that Melanie! My hub is finally coming around, but there were so many times in the past that I would explain, and explain- he would seem like he understood, even agree, only to turn around and do something that made things worse! I'm the one here doing all the research, too. I'm glad your hub is trying to understand- its hard to see your very intelligent child struggle like that and you KNOW she has done better work! My apologies!

PEglem, interesting. My son has never had strep, to our knowledge. I wonder if it would be the same for him. If your daughter was already prone to strep, maybe that was an indication. I just feel like both his dad and mom had to have their tonsils out and that genetically, there may be good reason to do so as well. Just an unfounded hunch but... I am absolutely not giving advice, just sharing experience. Also, I should have pointed out that my daughter's tonsils were not infected at the time of her surgery and were not swollen or enlarged, either. It was done solely to try to get rid of the strep, when we didn't have very much information about her condition. It was an act of desperation! She only had a 10 day course of amox. after surgery and was not yet on prophylactic abx. The ENT did not believe in PANDAS. It was 2 months after the surgery before she was swabbed for strep again-we all just thought that that would take care of the problem...

My daughter had the worst exacerbation ever after her T&A (maybe we should start calling them A&T's so I can get over this adolescent sense of humor about it!) and she still got strep afterwards. Turns out she's a carrier and tissue damage in the throat/mouth facilitates strep release in that case. Just telling our experience with it.

I know he's young, but it might actually help if you can very simply explain to him about PANDAS, and that you think this might be what's happening. The doctor needs to do the throat swab to see if the strep germs are there. You know its hard, but need him to be very brave. Try to include him in the discussion with the doctor so he feels more in control, instead of things just being done to him. Our kids have a lot of things that just happen to them. Just a suggestion- of course you've been living with him and know best.

Personally, i'd give DH a valium and do homebound!

We just finished a 10 day course of rifampin+augmentin. We're continuing on the augmentin. Very nice improvement in anxiety levels...I'm just afraid we need a longer course of rifampin... Thank you so much for sharing this info.

I watched online here: http://today.msnbc.msn.com/id/26184891/vp/34325311#34325311 For West Coasters this comes on a bit early! I liked it. Poor Lauren looks so tired! It needed more Trifiletti, less Dr. Laura!

We're probably just splitting hairs. Then how do you tell the difference between tics, compulsions and "stims?" I've never gotten a satisfactory answer to that one. Its just that my daughter has some very complex movements that I'm sure are involuntary (she doesn't have the physical coordination to do them voluntarily). Autism people call them stims- self stimulatory behaviors. I'm not entirely sure that the banging her head isn't a tic or compulsion, or the kneeing herself in the face. These things are so hard to watch, and I see her trying to resist doing them...then they explode out. I'm going to try to get some of this on film for when we see Dr. Latimer in January- in case Allie doesn't do them in her presence.