peglem

"Tics are sudden, repetitive, stereotyped motor movements or phonic productions that are often perceived as involuntary but that are sometimes accompanied by premonitory sensory urges." So perhaps the only real difference is whether they are repetitive. Buster That makes sense.

It's possible it is a compulsion rather than a tic. Is your daughter able to hold off on the gesture or finish it in some other way? So what would be the difference between a compulsion and a tic?

Aye yai, yai! Can't believe we forgot to mention the "Cunningham test": There is a doctor at the University of Okalahoma immunology lab who has been working on finding biological markers for Sydenham's chorea and PANDAS. It's only a study and they will not be testing anymore blood samples until the middle of January (I think mid Jan.), but she seems to be on to something and many here have gotten some guidanance from the results of that test, along with clinical presentation. The results of this test, and talking to Dr. Cunningham on the phone is what finally convinced my child's pediatrician that my daughter did have PANDAS and that there was more that can be done to treat it. He has since identified 2 other of his patients who have PANDAS as well. AND he's thrilled to the gills to be able to help these kids that he wasn't sure what to do about before.

Thank you! His tics have been CRAZY for 8 weeks so I'm hoping the pediatrician will do the strep culture. We have an appt on Friday. Gosh there is a little hope inside of me that maybe this has been the cause of anxiety/tics all along for years perhaps. So interesting. GOTCHA! I completely agree with being very proactive bordering on pushy with the drs. They are so passive when it comes to most things. So with the strep test it will be either positive or negative, right? And if postive, we may be dealing with PANDAS. From what I read, even if it is negative, it could still be PANDAS. What is the next step if it is Neg? If the doctor is willing, try the abx anyway- full strength augmentin or full strength Zithromax. Also, try round the clock ibuprofen- it reduces inflammation and can sometimes help.

I think it will be harder to see if medication is masking symptoms, although we have tried many meds with my daughter and exacerbations still made things worse. I would suggest when you see tics waxing to get him swabbed for a strep culture. Even if that comes back negative, see if you get a reduction with a course of antibiotics. That's what I'd recommend for starters.

They sound like they could be seizures..but I'm no expert! Don't want to scare you!

Oh, wow! I'm so excited to be having some reliable information from a reliable source aired, especially including information about more than 1 case! Thank you Dr. T!

I'm certain the NIMH will not officially post vaccine warnings, especially since the Scientific evidence is not there. Here, on this site, on FAQ, in posts- no problem. We can do our part to help parents make careful vaccine decisions, but as far as official govt. sponsored sites, IMHO we need to leave it off. Great point!

The problem with linking to vaccines is that there are so many variables and in most cases, parents didn't notice vacine proximity- especially if the child was fairly young. I have my suspicions, but nothing I can nail down. But, since this is an immune mediated condition, it makes sense to look at what has been done to the immune system

I'm afraid that's just a part of life here-everything gets exploited for somebody's profit. Capitalism at work!

When my daughter did a five day course of prednisone, she started getting sick on the 4th day with a upper respiratory infection. This may have been because she was cutting molars. Although she had a very good behavioral response to the pred, I wish I had made sure she was cleared of strep carriage before we did it. She was on full strength antibiotics at the time. I just think, like Buster said, suppressing her immune system allowed the strep to grow.

But, we don't want it too overwhelming, either. Maybe put a statement at the top or bottom directing people to post to the forum if they have further questions or need clarification about anything.

WOW, Dr. Manny did his research! The newspeople didn't really get it, but, That was good! Thanks for posting the link!

I think Dr T uses repferin(sp)I saw on his site Im glad things are good Danny is on the spectrum too.Its a double wammy.Sometimes Im not sure which is what.When you say itchy do you mean just Vaginal itch obviously danny doesnt have that but he does seem a little itchy.I thought it was just the dry skin but maybe he has some yeast build up .Is there Any natural products that help that? I think Im going crazy sometimes!!! Melanie I don't think its a double whammy in our case- I think the autistic symptoms are caused by the PANDAS disrupting development. Remember, autism is just a label for a collection of symptoms. The yeast is likely from the antibiotics. Kirkman's has an anti yeast product. Allie takes prescription meds for yeast. And yes, the itch (for Allie) is vaginal yeast.

Saturday- the 1st day w/o rifampin, and we gave the diflucan. Yeast "itch" is waning-we've also been treating with monostat cream. She's still on the 875 augmentin 2x/day. OCD is still there, but anxiety, rages, fight or flight...extremely reduced. She had just 2 wee episodes today. All I had to do was tell her to come let me know when she needs help- then she was okay. This is so good.

I think most of us here are willing to answer the same questions over and over, or at least find for you where it has been answered before. There is such a wealth of information here- it can be overwhelming to new members. We are here to support and help in any way we can.

I told the immuno the other day, when he said this was a rare disease, that I thought maybe it was just rarely diagnosed because not many physicians are aware of it yet. He said that may be the case, since its a newly recognized disorder. But, my recent experience w/ medical people is that they are beginning to come around. They were much more willing to consider it now, than they were 2 years ago. We're just impatient because our kids need it NOW, but I think in a few years it will be much better.

I didn't even know there was a delay. Is she sure she is signed in when she tries to post?

Hearing this has made my day!

I was wondering if anyone else has seen eating problems as a result of being unable to disengage from compulsive behaviors. My daughter is lining things up- I can spoon feed her during it, but she will not come away from it to eat or feed herself.

I don't know a thing about Namenda, so can't help you there. We, unfortunately, are intimately familiar with the rages and meltdowns- really, I think these are extreme reactions to fear (the source of which seems to be not being able to satisfy some compulsion)-the fight or flight thing. For us, too, getting the strep under control with abx seems to be what helps the most. Valium does seem to help my daughter, if things are not too extreme. When she is in full exacerbation it doesn't help much, but when we are going into a situation that we know will be stressful, it does help her through- like blood draws, doctor appointments... It takes the edge off enough that we can coach her through the anxiety. Anti psychotics are the worst for her and I've told her psychiatrist that these are completely off the table and will not even be considered. We've tried several SSRIs and I don't think they made her worse, but never saw any improvement either. For sleep (isn't that why your son is on seroquel?) we use 1.5 mg of melatonin, 900mg of valerian root, 400mg of ibuprofen, magnesium (not sure how much, because the bottle is gone-but 1 tablet). The melatonin works to get her to sleep, but will not keep her asleep more than 4 hours after dosing. The valerian relaxes her (similar effect as valium) and helps her stay asleep. The magnesium is also relaxing-especially for muscles-she has problems with muscle twitches in her sleep that sometimes wake her up. This combo works for her most of the time. Can your son swallow pills? I don't see any way to get the valerian in any other way. Also, the valerian will only make you sleepy if you are tired. It is something that you can also use during the day if he has had good rest at night. As far as managing the rages when they do happen- I've found this site very useful- doesn't solve the problem, but helps to manage it: http://www.members.tripod.com/LeeLydon/rage.html My heart goes out to you Laura. I think this is the very worst problem to deal with. God bless, Peggy

We did a 5 day prednisone at the end of September, while on Keflex. I think my daughter was a carrier at the time. We saw improvement on the first 3 days, but she started getting sick on the 4th and 5th days and was definitely sick when we went off of them.

Laura, please go have a strep test done....if its positive you'll get abx and that could help.

Will the minute clinics culture if the rapid is neg? If so, I'd take him there. When we 1st discovered strep in my child, she was treated with Keflex for 14 days. @ 5 days after that the behaviors came back and i took her back for another swab- I heard the doc. and nurse talking outside the exam room: N: I think it looks positive. D: That's impossible, she's just had 14 days of Keflex! N: Well it looks positive to me. D: Send it in for a culture. The doc did give us abx that day, and the culture did come back positive. Sometimes doctors are so confident in the treatment, they will not recheck.

I just realized that we refer to the "PANDAS Doctors" by one letter names on here! I totally see the whole name when I read that! Sorry Laura, glad you mentioned it! Dr. L=Dr. Beth Latimer in Bethesda, Maryland. Dr. T= Trifiletti in New Jersey. Here's a post where he introduces himself to the forum: http://www.latitudes.org/forums/index.php?...mp;hl=greetings