susie

Yes, we're doing high dose probiotics and oral amphotericin instead of diflucan. The spit bubbles and spaceyness are both pandas symptoms for my dd. I know this because they went away with the antibiotics alone. We started the amphotericin a few weeks after starting the lower dose augmentin, so I don't think it was the amphotericin that made it get better. Thanks for your thoughts- we're getting a stool culture soon so we should find out if there's yeast.

Holly, I buy a dye-free tablet from Walgreens- their "house brand".

My DD6 started a 5 day steroid burst on 9/1. She was already in a pretty good place after having been on a lower dose of Augmentin (250mg twice daily- she's 44 lbs). We saw a new doctor on 9/1 who doubled the Augmentin and started the steroid burst. She wants to get DD to 100% so we can then go to maintenance dosing of Azithromycin. So, now on day 3 of the prednisone and DD definately doesn't seem like she's better, but worse in some ways. Acting more spacey, blowing spit bubbles, stuttering worse. The Doc. said to continue on and finish the pred. and that this was likely a "healing crisis". So, how many of you saw things get worse before better and how long until I might see some good come out of the prednisone? The other thought I had was that perhaps the doubling of the clav. acid isn't helping. There was a thread a few days ago about how clav. acid regulates dopamine and seritonin. Maybe it's messing with those dopamine receptors or the dopamine itself. DD6 had Anti-dopamine 1 =2000 (range is 500-2000). Any input would be very much appreciated.

Wonderful! I'm so happy for you. My daughter starts first grade next week and I've been worried sick just like you, so this nice story couldn't have come at a better time.

we saw Dr T recently and he is good w/ finding infections and treating w/ abx. he does not do PEX or IVIG. he does do steriod bursts. Dr. T. told me that IVIG is an option if antibiotics don't work. I was also able to get a phone consultation with him quickly and get help quickly until the appointment with our local pandas specialist (took about 2 months to get in with her). He's very kind and caring, and is my hero for helping my kid so quickly. Just be patient with him, he doesn't really have an office staff to help him out with paperwork, answering emails and those sorts of things.

Those doctors should be ashamed of themselves. They pass out psych. drugs like candy, but won't listen to a parent that antibiotics are helping "psych" symptoms. What is going on? it's insane. I would order out of the country if I had to. I'd be afraid, but I would probably do it too if I had no other choice.

Cindy, Did any of the doctors say why they didn't want to treat? I'm very curious about that. I would think they would want to treat before he gets worse. (I thought I had read on this forum that each exacerbation can get progressively worse if left untreated.?) I'm so sorry you're having to worry about all of this now for your 5 year old too. I only have one child and I can't imagine having this worry X 2. Take care. Susie

Meg's Mom, Thank you so much for your detailed response. It made so much sense! I'm ordering the book you recommended today. And Vickie, thank you for the link. I have been wondering how good my daughter's therapist is. She told me that the only effective thing for OCD is medication. She also gave me the impression that she had her doubts about pandas (even though she saw with her own eyes the change in my daughters anxiety before and after antibiotic treatment). My daughter's medical treatment so far has been various antibiotics. Augmentin seems to work the best, but one of the doctors is worried about long term Augmentin use because of its wide spectrum of activity and the effect on gut flora. She also on high dose probiotics and we use various supplements that may (or may not) help with inflammation. I try to use the ibuprofen sparingly because she often complains of tummy aches (these started prior to antibiotics). We have an appointment on 9/1 with a local pandas specialist, so maybe then we'll come up with a long term plan. Thank you again. I'm touched by the time you took to reply to my question.

I've been lurking for a few months now and have learned so much from all of you. Thank you so much for this great forum! My DD6 was recently diagnosed with Pandas. Her main symptoms have been tics, high anxiety, and some of the miscellaneous things that I've heard others talk of like blowing spit bubble and mood instability and anger. She hasn't had any "classic" OCD symptoms, at least that I can recognize (hand washing, organizing). I would like some opinions though on a couple of things I can't figure out how to handle. She has become obsessed with matching clothes with her friends when she goes to meet one for a play date or at gymnastics. If her friend is wearing shorts and a tank top, then she must do the same or she will not be able to get it out of her head and enjoy herself. We now take large bags of clothing wherever we go so she can change. When I've asked her what bad thing will happen if she doesn't change, she says that she feels like she's going to burst . And she definitely acts like she might explode. So, does this seem like OCD? Am I making a mistake by catering to her obsession? At this time, our other alternative is to just leave the play date (with her screaming of course). She's seeing a counselor for the anxiety and I went over this with her, but she didn't seem to have any suggestions. I don't know what to do. I really really HATE PANDAS! Thank you for reading.

Do you have Emla cream? It works wonders for my 6 year old- she has no problems with blood draws (she actually likes going because she gets a beany baby from the lab each time). You just put a pea size amount on a tegaderm, then put it on the area where the blood will be drawn. Do this about 2 hours prior to the appointment and the area will be completely numb when they insert the needle ("the pokey thing" as my daughter would say). Also, be sure they use a butterfly needle so they're not moving the needle in and out when they switch out the tubes. I'm always completely amazed that doctors don't automatically give people a prescription for this when they order bloodwork for kids! Hopefully you can get some first thing in the morning. Most pharmacies carry tegaderm- it's expensive, but the Emla wont work without it. Hope this helps. Susie

Hi, Were you already giving the fish oil when the tics started? When my daughter began having tics, I added several supplements based upon things that worked for many of the people on this forum. Our doctor (M.D. with a holistic approach) suggested that we try krill oil instead of the fish oil that my daughter had been on for at least 2 years prior to tics starting. He said sometimes it works better. Well, for my daughter it made things worse. After switching back to fish oil for a while, I then just stopped that as well. Her tics quickly got much, much better. I still see an occasional tic, but they were pretty constant for several months (one would stop, another would start). I'd say the tics are 90%-95% gone after stopping the fish oil- nobody ever notices the tics except me now, and probably only once or twice per day. So, in my daughters case I feel like the tics were mostly caused by the fish oil. Others here have said that fish oil makes tics worse for some. Just something to think about.

Thanks for this post. My daughter has stuttered for about 2 years now and has developed motor tics over the past 6 months and vocal tics in the past month. I always thought that there was something a little different about her stuttering, but the speech therapist said it was just run of the mill stuttering. We did the Lidcombe program for about 6 months with very little improvement. The most improvement I ever saw in her stuttering was when we started her on GABA for anxiety. It almost completely eliminated the stuttering for a couple of months, but then it came back full force. Strangely, it seems that the stuttering has improved in the past month since the other vocal tics started. I'm really pretty sure that the stutter is a tic. The speech therapist wants me to get a neurologist to confirm that the stutter is a tic, but I seriously have doubts that a neurologist can do that. Do you remember the type of therapy that finally worked for your son's stutter? The speech therapist (who specializes in stuttering) is willing to try something different and I'd love to know what helped your son. Thanks so much. Sue

Greetings. I'm a pretty new member here with a 6 year old daughter who developed tics several months back. I've mostly been reading and learning and I'm so thankful for the wonderful people who share their knowledge here. I do have a question that I'm not sure anyone will have an answer to, but I'll ask it anyway. I bought Cardiovascular research Magnesium Taurate 125 mg at my local health food shop, then later ordered the Bontech brand thinking that since each capsule contained only 50mg of Magnesium the caps would be much smaller. Well, they turned out to be bigger. So, has anyone figured out why the Bontech brand (50mg caps) are larger in size than the Cardiovascular Research (125mg caps). I know they all use some filler, but I thought they used as little filler as possible to fill the cap. This has bothered me since I discovered it and I just have this feeling that one or the other is incorrect. I emailed Bontech but did not receive an answer to my question. Also, I've been unable to figure out how much Taurine there is in Magnesium Taurate. Anyone know? Thanks so much! Sue

Hi Newbie, I'm new here too, but one thing that comes to mind besides the chemicals in the humidifier is the possibility of mold in your home from having a humidifier running all the time. Mold is a pretty common tic trigger from what I've read. We actually have a de-humidifier running a lot of the time and it pulls about 2 liters of water out of our air every day. Since we started using it, there's no more mold growing in the corners of our windows. It's something to think about. Susie