momaine

Thank you for the update. I hope things continue to improve. My dd is on day 20 of Biaxin. Though it wasn't a perfectly easy 20 days, they were the best 20 days in a long time. A few days were very difficult (interspersed here and there) and she is still very frustrated with this disorder, but overall, she has improved. We start a another 5 day course of prednisone tomorrow and I'm hoping for continued improvement with that. Angela

Thank you for your concern and words of encouragement. Today was better - she did alot of fun things today and only acted out while she was winding down from her day. BIG difference from yesterday. I'm keeping a daily chart here, and will keep everyone in the loop. Thank you!!!! I used Buster's chart idea and made it my own. I listed her typical behaviors and I rate them every day on a scale of 1-9. then I use excel to see them on a line graph. It makes me feel better and its quick once you set it up and play with it for a bit.

I answered yes to having had symptoms before being tested, but wanted to clarify that that is only looking back 3.5 years that I can remember those symptoms. Nothing recent.

they are particularly difficult to handle because all of my hope goes down the toilet for the time being. Now that I've seen it happen once, I hopefully won't panic if it happens again. I'll first try to up the Advil and then just deal with it and try not to lose hope. I hope tomorrow is a better day! Angela

Steroid was started 7 days before Biaxin XL. Last time the steroid burst took 13 days before we saw progress. This time the dose was higher. (40mg per day for 5 days vs. tapering 6 day dose beginning with 24mg and lessening 4mg per day) Angela

Hang in there. My dd had one bad day a few days ago and then is back to her new and improved state, over all. A little difficulty here and there but much improved over all. Angela

no, but 2 of my nephews have Crohn's Disease. I've suggested they get tested for mycoplasma. Angela

Nomoz, Yay! So glad to hear you are seeing improvement too. Angela Thanks, and so glad you are seeing the same. We had a setback today, and I'm kind of down. But, I understand I should be looking for a sawtooth effect here - waxing and waning kind of recovery. Up until today, things were really really remarkable. Today, unfortunately, the old patterns of behavior took hold while I had her out shopping. "I'm NOT going to First Holy Communion. Do NOT buy me a dress.. I HATE GOD!!" right in the middle of Macy's... Believe me, at this point, I really don't even care what other people think.. but I hate that feeling of old wounds being ripped right open. Just when you think you are on the road to recovery, BAM, you are reminded that this is a fierce and fiery illness, not submitting easily. Sigh. I remain hopeful, just had to vent.... thx Noelle Hang tight. We had one day like that about 5 days ago and the next day she was back to her improved self. If Advil helps, maybe try to up it if she gets like that again?

That would be fantastic if other doctors learned from what you are doing. My concern is that most won't put themselves out there like you have. I thank God every day for doctors like you.

Nomoz, Yay! So glad to hear you are seeing improvement too. Angela

For us, there was a remarkable difference on day one, but that was also day 7 after a steroid burst (last steroid burst I saw improvement on day 13, but it was a lower dose the first time) so though it's hard to say for sure, it seems to me, it may very possibly have been the biaxin that made the difference. Angela

My dd is on the generic of Biaxin XL and has not had any problems with her stomach at all. She always takes it with food and takes probiotics twice per day.

Oh, and I meant to mention that dd had been on Augmentin XR for 3 months and Zith for two months when she tested positive for mycoplasma. Angela

And do you think that if we find the cause (for instance M.P.) and treat it with the correct antibiotics, that these kids will be cured? Or do you think they need IVIG to reset their immune systems? (Not sure if I've said that correctly, but I've read that Dr. K believes there is no cure except IVIG, just remission) Angela

I've thought about updating the board but didn't want to jinx us. ;P I've also been wondering how the rest of the Biaxin kids were doing. Thanks for the updates. Sounds positive, overall. Dd did a steroid burst a couple weeks ago and I am still not sure if the benefits we are seeing are from the prednisone or the Biaxin xl, but as more time goes by, I'm leaning toward the Biaxin. The first steroid burst she had, gave her good results of days 13-18 following the burst. (6 day burst, tapering dose) The second steroid burst (40mg no taper for 5 days) was one week before starting BIaxin. Coincidentally, (or not) the day she started Biaxin, her OCD symptoms diminished considerably. She went form needing me to watch EVERY bite she ate, to eating 95% independently, even going to get her own food. She also has begun to eat a slightly larger variety of foods. Her reassurance questions have gone WAY down and almost everything seems to be a bit easier. We are on day 13 now of BIaxin XL. (generic) 12 out of the last 13 days have been the best in a long, long time. 3 days ago, she had a very difficult day and I thought perhaps the steroid was wearing off and that the benefits may have been only from the steroids. But the next two days were good days again. (last time when the steroids wore off she declined steadily) Today is the 3rd day following that bad day and this morning has started out with some difficulties (and some positive things too) so I'm worried again, but we'll just wait and see. Wish I could be more certain of the cause of her improvement, but I'm just glad she's improveing. Maybe its the combination of both therapies? It's given me a lot of hope. Angela

IMO, He's only 2 1/2. with or without pandas, dinner should be a fun time and as long as or short as his attention span can handle. Why make dinner time a time where he gets time outs? Enjoy him all you can. They grow up before you know it and leave whatever stage they were in behind. =) (and I'd say that was even more importatn if his happy times are compromised with PANDAS) Angela

Melanie, We did the high dose a week and a half ago. We plan on waiting at least 3 months before we consider another one. I don't know if you will have to pay Dr. K's fee, maybe not if the contact is between your MD and his. Our pediatrician wrote him an email and he wrote her right back. We didn't pay any additional fees but we had recently paid for a 1/2 hour phone consult. The explanation I got for why low dose monthly doesn't work for PANDAS is that one, it isn't enough to turn off the immune system for a while which is necessary to change the autoimmune process, two, doing it too often is like aggravating a wound that is in the process of healing, and three, some of the antiboidies that get introduced through IVIG are the very ones that are causing the problem. That is why kids often flare initially before the improvements start. I do not want to present myself as some IVIG expert. But when it comes to PANDAS, I believe strongly after flailing around for a year that Dr K. is the undisputed PANDAS expert. Certainly possible that your MD, who I'm sure is fantastic, my hear his explanation and disagree. Most of alll, good luck and there is nothing I want more then for all our kids to get better. Alex Alex, How are things since the IVIG? Any changes yet? Positive or negative? Which hospital did you go through and how was that experience? Angela Angela

Try to get preaproved to see him before you go. Tell them you want a pediatric neurologsti who specializes in PANDAS. I didn't try to get approved before we went and had to pay for that one, but got preapproved to see him on subsequent visits. I have United Healthcare. Angela

My dd is 13 too, but we just discovered 3 months ago that her symptoms were related to an autoimmune issue. Hang in there. Maybe it will be over for you soon. Angela

No meds of any kind during pregnancy.

Has he ever been tested for Mycoplasma? Because I just read that Mycoplasma can sometimes cause Crohn's Disease. I have two nephews with Crohn's and my sil is now going to look into it. AS we talked she remembered that previous to one son's allergies starting out of the blue with Crohn's following shortly after, that he had a bad cough and when she took him to the doctor after listening to his chest they said he had cold induced asthma. He was never tested for MP. Maybe it was that after all and for him it went to his intestines instead of his brain? worth looking into, I would think. MP sounds like it can cause a range of autoimmune problems if left untreated. Angela

The only thing I can add to this conversation is that when my dd takes Advil or gets a prednisone burst, her symptoms reduce significantly. In my mind the ocd/tics are directly related to how much inflammation is in the basal ganglia at the time.

[quote Yah doc order biax xl but SHiiiii....they only hadclarithromycin er 500 ....i think it says generic of biax xl should i wait for the good stuff or go with this trying to call dr T as we speak We're also using the generic. I think it shoudl be fine. Angela

http://www.rain-tree.com/myco.htm more mycoplasma interesting article. Angela

http://answers.google.com/answers/threadview/id/469386.html This is interesting about IgG and IgM with MP. Angela