greeneyes48072

I just wanted to chime in and second EAMom's suggestion of the steroid burst. It should at least give him a temporary break from it all and also help confirm PANDAS for you...

Thanks guys. I also read about the IgA deficiency problem, so I will be asking for that test. I also read how it puts a strain on the heart, lungs and kidneys so he should probably get a check up too. It is good to hear that some of you did see an improvement with the tics (Pat), as I was really worried. I saw the case study from back in '99 where the follow up showed no improvement with tics for the group that received IVIG. Wish me luck with getting his father on board. As of now he is still against it. I myself would do it today. I was hoping it wouldn't come to that, but he is not improving, we are at 16 weeks now and it's just getting worse (outside of the short improvement from the steroid burst)...

Thank you. Sure sounds like you have a lot to deal with right now too. I'm trying to move forward, but his father, my ex, is a road block right now...

On top of everything with the tics, when I got home last night most of my son's eyelashes were gone. It seems I have passed my trich onto him. I think we're ready to check into the IVIG. Right now his symptoms are: verbal tics, motor tics, chorea arm/hand movements, fear of the dark/trouble sleeping alone, hyper activity and now eyelash pulling. For those of you that did the IVIG, what preliminary bloodwork/tests need to be done to see if there is anything that would make a child ineligible? And for those of you who did IVIG and your child had tics, how did the tics do after the IVIG? That you all so much!!

My son's father wants to try this stuff. Has anyone else checked into it? I feel like it's just a product that is trying to use the theory of a real treatment (adult stem cell transplants done in germany) without real results. Maybe I'm just too untrusting these days... http://www.subtleenergysolutions.com/stemenhance.html

My son (age 7) has a CT scan done about a month ago through the ER....it showed nothing...

My son has just the last few days been saying that he keeps seeing a burglar outside the window. I mentioned it to our Dr and he said he believes it's more age related than PANDAS related. It had only happended at night when I had first spoke to him, but then yesterday as we were driving home from school, he claims he saw the burglar on the side of the road. He was also complaining about blurry vision. It worries me since this has not happened before...

Oh my, I'm so sorry. I do know the first days on our steroid pack, my son's hostility blew up, which I was told by a friend of mine to expect with a steroid. How many days is your burst? The pack my son was on was 24mg day one, 20mg day two, 16mg day three, 12mg day four, 8mg day five and 4mg day six. The hosility mellowed out once he was on the lower dosage, about day five...

Does he play piano? No. He does the same thing, he uses his middle finger for stuff without knowing it. I notice it when he types on the computer a lot too.

My son does. We consider it one of his tics, I believe my Dr said it is a chorea movement...

I just wanted to say, my son's primary symptom is tics with his PANDAS. We tried both Tenex and Clonodine (front runners for tourettes) but in his case they made the tics much much worse. The worse they have ever been over this whole ordeal (which is just over 3 months for us now). I do know I read somewhere that the traditional meds for tourettes make things worse for PANDAS kids, which we found to be true. Another thing that is very interesting is the steroid burst. I have heard that steroids make tourettes tics much worse, which is the opposite for these PANDAS kids. And trust me, when you see it, you know. My Dr did his own version of a burst. He used a prepacked 21 pill 6 day Methylprednisolone pack. We saw an 80% reduction on day five (nothing the first 4 days). It was great, but short lived. But great to have it to help with confirmation that it is PANDAS.

I'm still trying to research this apocynin. I don't even know if it's an oral drug. I found this article: http://www.thejobcure.com/reuters_article....119scie004.html When I search for apocynin, I find how it's antiinflammatory effects are being found useful for all sorts of autoimmune disorders. Has anyone ever heard of it? I could not find it on drugs.com. I was thinking, since the steroid burst causes improvement, it must have something to do with the antiinflammatory effects, or the autoimmune suppression effects, or both, and started doing searches on brain inflammation and found the article. Just thought I'd throw it out there...I'm having internet problems at home so I'm not sure when I'll have time to find out more about it, and just in case it would be useful, wanted to let you all see the article...

We are in Mi. We are pretty limited with antibiotics-allergy to penn, sulfa, and cextriaxone....

One of the best/most informative I've seen...

I'm just checking in. My son has now been on Azith 250mg for 30 days and we are at the 12th week since onset. We saw a bit of an improvement with attitude, ability to fall asleep and a reduction in his verbal tics, though the motor tics had continued. But since Thursday we lost all improvement in all areas and Monday he showed signs of a cold. It seems just a simple cold has caused a reoccurance or possibly even a worsening of his symptoms. Our local Dr is consulting Dr K today. I have this feeling that when Dr K hears that just a simple cold caused all this, that he is going to say that IVIG is about the only hope we have and my son's father is not the least bit on board with trying it. The last 12 weeks have sucked the life out of me and now it looks like I am starting at ground zero again...

Here's Dr K's site: http://webpediatrics.com/pandas.html

I posted last week how my son was unable to speak in school and that sent us on a trip to the ER, joy. Well, after a normal CT scan the dr is not worried, but it has happended a couple more times, lasting an hour or two each occurance. He can't even whisper when it happens, it's like he can't get his vocal cords to do a thing. The Dr thinks it's just a type of tic. Seems strange to me. Has anyone heard of this being a type of tic or have any thoughts on it? It really concerns me (on top of everything else of course).

Yes, she one of the main 8 neurologists they have on staff. Have you heard back from them? How did it go, with the results? I would love to hear how Gaby is doing and how Children's may be helping you guys out...

Our peds Dr already let us do a burst. We saw an 80% reduction with the tics. I like him. He always wants copies of any emails or websites I find with info. I'm not sure if by law he could write across state lines though. But he has been around a loooooooong while, so maybe he knows someone in your area. His name is John Dorsey. http://www.iparenting.com/experts/bios/88.php http://www.bhpediatrics.com/

We had seen Dr Majkowsi, after being admitted through the ER. I had heard just a tid bit of PANDAS and she refused to even speak about it. Even though we had a positive strep test at Beaumount, she said she wouldn't even consider it unless she proved for herself via titers that he had indeed had strep. She was using bloodwork taken just 4 days after his positive strep test, and of course all of the levels were within "normal" range, though no one would tell me the levels. She then said she couldn't see us for 8 weeks. When I called two weeks after the ER visit and left her a message indicating he was worse and couldn't even attend school, I never got a call back. Not even to this day...I hope you do much better with them...

If you hit a wall finding someone, let me know and you can try our peds dr in Bingham Farms. We are at the 9 week mark and my son's tics don't seem to be fading. We are 12 days into our attempt at 250mg Azith daily. He is a little less irritable and sleeps better, but tics are still going. After reading Dr K's info, our dr is slowly moving towards IVIG if we don't see improvement. He made the comment that he would want to call Dr K if we go that route, so that leads me to believe he's willing to do it...Good luck!

Hey Pat, Could you let me know how it went at Children's. The Dr we saw there was horrible. I'm just currious if you had better luck... Rachel

He's a pediatrician. After I started seeing him I found him online at places like Nickelodeon.com (http://www.iparenting.com/experts/bios/88.php). He seems to love his job just for the sake of it. I don't know what the restrictions are to cross state lines. He know's of Dr. K, but I don't believe he has contacted him as of yet. He's also trying to provide heathcare to kids of incarcerated parents who are falling through the system...ppmkids.org. You may find someone good close to home too... BTW I think I sent his info to the wrong person...sorry about that...

Hi Michele, I don't know how far you are willing to Dr, but my Dr is out of Bingham Farms Mi. He only needed to see us one time and does all follow up by phone...let me know if you would like his number...

Though I'm a newbie to this as well, my local Dr was the first to actually bring up the SC. He told me that the two are similar but not the same (when he saw my son, he said it was definately PANDAS not SC). He said SC is not as prevelant as it was when he was treating it 30 years ago. He said SC does not have the OCD and hyperactiviety issues and he said that the movements are very different. That they are slow fluid movements with SC, unlike the tic/repetative one with PANDAS. Hope that helps a little...