reneegavin

I'm just wondering in PANDAS, how often do flare ups generally occur? My 12 yo dd, who has not been clinically diagnosed with anything, is usually fine for 2 weeks, then awful for 1-2 weeks. I'm not sure if at this point, it's related to PMS or something else. She's always had anxiety, but it never came and went before.

I could not find a doc who would even consider antibiotics! The psychiatrist she saw said that she just didn't fit the PANDAS diagnosis. Do you just give the ibuprofen during a flare up?

I am also considering putting my dd on a low dose of Zoloft. Everyone in the area is saying it couldn't be PANDAS, and I don't have the funds to fly her to a doc who does! Truly, I wish I did, but a psychiatrist who treats kids w/PANDAS is saying she just doesn't fit the mold. She needs some relief from her symptoms, so I'm not sure what else to do.

.

I've been reading more about PANDAS, and it's looking like kids usually outgrow PANDAS between 12-16?? Has anyone seen this to be true? I'm not sure that my 12 yo dd has PANDAS, but she does seem to be having more relaxed time periods.

Well, my dd had her bloodwork..will wait for the results. She locked herself in the bathroom at the doc's, then backed into a corner, refusing to let themdraw blood.. Hubby had to hold her down! She dreads the throat swab worse than bloodwork! I'll wait on this before I pursue anything else. I e-mailed Dr. K. How does he diagnose without seeing the patient??

How do you get in touch with him, and where is he located?? The thing that's making me think it might not be PANDAS is the fact that when she had a bad sore throat a few years ago, we had her swabbed and the test came back negative.

Well, I just canceled the dr. appt for the swab, figuring I would jsut wait until she went back to her allergist. When I called to see if they could move up her appt., they told me they don't do swabs there! I'm going to wait for the results of the thyroid panel, then wait and see what happens. I will ask the allergist what he thinks also.

UGH!! I just got off the phone with my dd's psychiatrist. I asked him if he was familiar with PANDAS, and he said that he was very familiar with it. He said however, that my dd's symptoms did not fit the PANDA profile. He said from her history, she just doesn't fit. She doesn't have too many OCD tendencies. It's more anxiety and now minor tics. I reallly don't know what to do at this point. He is a highly recommended psychiatrist and apparently treats many kids with PANDAS.

I just read the article by "Buster", and now I'm more confused. My dd symptoms do not get worse when she is ill. They wax and wane for apparently no reason, but don't get worse when sick. As a matter of fact, she's rarely ill at all, but often anxious and off and on episodes of minor tics. Does this mean it is most likely not PANDAS?

I just called her ped. back and said I would like a throat swab anyway. I didn't talk to the doc., just the receptionist. So who knows what she'll say when we show up! If it does come out positive, I'm going to ask if, just out of curiosity, can we try a round of Zithromax, because I've talked to someone whose child had it, and it worked. If she refuses, I'll ask if she can refer me to someone who can, even if it's a specialist.

The pediatrician basically said "What's PANDAS"? When I told her, she said that if she's a carrier, the cells are not active, so it can't cause problems. SHe's seen tons of kids who are carriers, but they don't have anxiety. She said when they went for seminars about strep, they were told not to treat the carriers, because as soon as you stop the antibiotics, it will come back. She doesn't want to keep any child on antibiotics long term because of the resistance issue. I am going to call today and say I would like her swabbed anyway. It's possible that she is not even a carrier and it's not even an issue, but I won't be able to rest unless I know! She's also being tested for thyroid levels. Does it usually come back once you stop antibiotics? Also, her symptoms started before her first active strep. She was colic as a baby, sensory issues and OCD nighttime ritual as a toddler, constant worrier as a young child (all before her first strep).

Hello everyone, My 12 yo dd has had anxiety and minor OCDish symptoms since I can remember. She's been in therapy for the past 1 1/2 years without a ton of improvement. Lately, she's also develped minor vocal tics and sadness. I'm sure some of the sadness and mood swings is in relation to her age and getting ready for her period. However, we took her to an allergist for her excessive throat clearing, and he told us that she had a pocket in her tonsils that was causing a chronic minor tonsilitis. He asked if I wanted her swabbed for strep? She was already a nervous wreck, so since he said it wasn't a big deal if I did, I chose not to. He said it's possible she could be a carrier, but if she is, it wouldn't be a big deal. I then started to wonder...if she's a strep carrier (which I don't know for sure), could it be causing PANDAS and the source of her problems? I know I'm grasping a bit, but our next step is a thyroid profile, then a very low dose of Zoloft, which I'm not thrilled about. I asked her pediatrician, but she said that swabbing wouldn't make sense, because even if she is a carrier, it probably would not cause PANDAS, because it is not active, and she wouldn't treat it anyway. She said even if she gave her antibiotics, once she stopped taking the, it would come right back, and she won't keep a child on antibiotics permanently. My question now is, does this even sound likely to be PANDAS??? She had active strep once. We thought she had it again a few years ago, but when they did the swab, it came back negative. The symptoms for PANDAS come on very suddenly and strongly, right? Because my dd's did not. They grew over time. I don't want to miss something, but I don't want to grasp at straws either!