anneca

[thanks for your reply. I wonder if it matters what time of day we take the Rifampin- we you taking yours at a certain time of day when you were getting the headaches? We are taking it around noon right now. quote name=NancyD' timestamp='1322384175' post='126472] Both my DD and I got bad headaches in the first few weeks of taking Rifampin. Mine came in the afternoon and evening every day. After a few weeks they stopped. Now I never get them.

has anyone's child had this symptom? My son has woken up twice this week at 2 or 3am with a severe headache and nausea. He does go back to sleep after an ibuprofen and with an icepack on his head. Wondering if anyone has come across this. Headaches are not uncommon for him, but not like this. Previous to this week it has happened twice since starting the antibiotics. My son (11) has been on 450mg of Rifampin as well as azithromycin for a few weeks now for bartonella treatment. thanks!

thanks for the replies! i will try orange juice and/or rice milk tonight. And i will also let him know there are others out there taking it right along with him! :-)

my son's LLMD has started him on a couple of herbal things, the first of which is called Blt "microbial balance #1" . I hear it's supposed to be very good for bartonella, which my son has. The taste is extremely bitter, and my son (11) has great resistance to taking it. Is anyone out there using it, and had either successful results, or found a way to mask the taste in food? It has such a strong taste that nothing i have tried has masked it so far... thanks! Anne

thanks so much for all the replies. All your info helps greatly. I am going to go on my own because it seems doable, (though not ideal). We have a flight home the late afternoon of the 2nd day, so i am just hoping we make it back before the aftereffects hit. It's good to know i can get a wheelchair if needed. And i am also having him drink tons of fluids before we leave tomorrow. I will hope for the best!

I am flying to Chicago this week with my son to do our first IVIG. My husband is concerned that it will be difficult for me to handle alone and wants to know if he should go with me. Our son is not hard to handle (11 yrs. old) but wondering if any of you could advise me. We are booked into the La Quinta and have a rental car. Is there any difficulty between the first and 2nd day? I feel like it will be no big deal, but what do you all think? thanks very much. Anne

My son, age 11, who was recently diagnosed with PANDAS (though i believe he has had it for 5-6 years), did 7 days of steroids a few weeks ago, after having a phone consult with dr. K. I was expecting some type of change but i have seen nothing, except if anything a slight increase in tics. My son is also on 125 mg of zoloft and i'm wondering if this could blunt the observable effect of steroids. Anyone else out who had no luck with steroids? Thanks.

My son's psychiatrist thinks he has PANDAS, so we did the Cunningham test, and the additional tests Dr. K asked for, and sent him a medical history. The next step is the 1 hour phone conference with him. I'm wondering if there's anything else i need to prepare to be ready for this. Anyone been through this before that can help? thanks. Anne in Calif.

thank you so much for the quick reply. we will probably do a phone consult and go to Chicago for the treatment. At least that's what our ped's other PANDAS patients do... haven't made any plans yet. thanks for allowing me to sleep tonight!!

This is my first time posting, so forgive me if this question has been posted before. My son recently started seeing a psychiatrist who suggested PANDAS. Dr. Thienemann suggested sending blood samples in to dr. Cunningham's study in Oklahoma. The results came back clearly in the range for PANDAS. So after a round of antibiotics that did not help, I contacted Dr. K in Chicago and forwarded him the Cunningham results, to hopefully go forward with IVIG. He requested additional testing (ASO, IGG, Dnase) and just today i saw that the results came back in the normal range. What does this mean? It seemed to me that the Cunningham results were conclusive, but do normal results on the other tests mean he might not have PANDAS?? I was so hopeful that something might be able to help with his OCD, Tics, separation anxiety, etc.etc.... Wondering if anyone might have had a similar experience. i would so like to get some feedback... thanks very much...!! Anne in Calif.