JSL25

We are new to long term antibiotics. DD has been taking Azitrhomycin 1x day since November and Dr. L wants her on it until June. Things have been relatively stable, but she’s just got over a virus and complained tonight of an earache. I’ll take her to doctor tomorrow to check that out. But what happens if she does have and earache? Or if she had strep or sinus infection...if she’s already on Azithro, would they give her another abx?

Some of the things you listed at the bottom of the post could be considered OCD. For example, my daughter’s OCD is around clothes and how things “feel”.

My daughter’s two chief complaints, and the VERY first symptoms of this disease, were leg pain and stomach pain.

Does anyone else’s PANDA get peeling fingers and toes from time to time? My daughter has this issue at least once, maybe twice a year. I’ve asked her regular ped about it several times and they always kind of shrug it off. She just happened to have a stomach virus and fever for two days, but seems over it. She is in a bit of a PANDAS flare right now, which I attributed to the virus. She’s on daily Azitrhomycin (going on 2 mos.) and is also doing a Zeolite detox right now. Also takes a daily probiotic.

We are two years into this awful disease and our specialist wants to put our daughter on Azitrhomycin until the end of the school year and then start again at the start of the next school year. We see good improvement when she takes an antibiotic, but I’m so scared to have her on it long-term. I worry about what it will do to her body now and for the future. How do other parents reconcile this?

Has anyone seen this neurologist? I read about him on a local Facebook page. I'm not far from Lancaster and would love to find a doctor who can help my daughter. In the two years we've been battling this, I still haven't found a doctor to help us. After seeing Dr. L in DC for our initial consult, she has been unresponsive to subsequent flares. Our regular ped doesn't believe in PANDAS, and the CHOP neurologists don't either.

Hi, My daughter has been a patient of Dr. Chugani for a couple of years, and I just received a letter from his office about a month or two ago that he has moved back to Chicago area. He has a position at one of the university hospitals there (can’t rememver which one). Keep that appt with Dr. L. It might be your best shot.

Thank you, bobh. I tried to clarify with my ped whether this meant it was Group B strep, but she said, “we can’t tell which group, except that it’s NOT group A.” So I guess my daughter may have any of the other types, but they don’t know which. And oddly, my doctor doesn’t seem interested in figuring that out. But that seems to be the theme in my struggle to get my daughter help for this past 1.5 years.

DD (5yo) has been struggling with PANDAS for 1.5 years. Tested positive for Group A strep at first onset, but never again. Has tested positive several times for non-group A, however, often coinciding with a flare. Pediatrician, who tries to help but is a bit of a PANDAS skeptic, says that this kind of strep is just colonized in some people and that it doesn’t cause illness and doesn’t need to be treated. Dr. L has not been responding to my calls and emails. Not sure what I should do. Has anyone else dealt with non- group A strep in their PANDAS child? I’m wondering if a tonsillectomy is necessary.

Hi Bttrfly1, I could have written your exact post this week. My daughter (5yo) had a perfect past 4 mos. Not a single tic, no rage, etc. Then this week the hyperactivity, obsessions and rage started with a vengeance. I have no idea why and I’m devastated. I’m sure the tics will follow shortly. She started a day camp this week - is she overtures? She has a slight stuffy nose - maybe a virus? We saw Dr. L last January but she has been unresponsive to my calls and emails. I put in three calls and emails to her last winter when we were going through and she never responded to us (even though we paid her $1200 fee and drove three hours to see her in Jan.). My ped is not helpful and doesn’t do any investigating beyond a strep test, and I can practically see her eyes roll every time I show up requesting another one I’m curious to know what her response to you will be. Will you please report back when you hear? And may I ask, how old is your child? good luck.

Will you please share what brand of turmeric capsules and what dosage you give your 7.5yo? Thank you.

When you take him to the hospital, use the words autoimmune encephalitis. Maybe they’ll be more helpful looking into that and treating that.

My daughter, age 5, has not been able to find any relief from her PANDAS symptoms which began at age 3.5 with a strep infection. That first flare was her 2nd strep throat infection of her life, and in addition to that, she had two perianal strep infections at the age of 1 and 2. So a grand total of 4 strep infections in her 5 years. Since that initial onset at 3.5yo, she has NOT tested positive for strep again, despite many swabs/cultures. However, her PANDAS symptoms have been waxing and waning since then. Dr. L has suggested a tonsillectomy and we found a local ENT willing to do it. It’s now up to my husband and me to decide if we want to subject our daughter to the risks of anesthesia and surgery even though she really has not had that many strep infections, and hasn’t had one in 1.5 years. This is proving to be a very difficult decision for us. We are desperate to help her find relief from this nightmare illness, but I’m just not convinced it will help. She is in the worst flare yet right now and there has been no strep preceding this one. Steroids and antibiotics aren’t helping. Any words of advice? Thank you.

DD has been on several abx over the last few months for a variety of illnesses, but her PANDAS symptoms have been relatively under control. After the the last round of abx to treat an ear and respiratory infection, her PANDAS symptoms have flared like NEVER before. She usually responds well to ibuprofen during a flare and I can get her back under control pretty quickly, but this time nothing I do is helping. Everyday her rage and emotional lability is worse. And her tics are bad, and she’s up at night multiple times. I think she had a vagknsl yeast infection during the last abx but i thought it seemed much better after a few vinegar baths. I’m wondering if this flare is due to her gut flora being off from all the abx or maybe due to yeast. How can I correct this??

Bigmighty- how do you give it to your kids? And how big are you kids (trying to figure out how much to give)?