MarylandMama

We scored a cancellation appointment and were able to get into our neurologist today. She advised against a second vaccine dose for our child and wants to do blood work to see antibody response from the first dose. Our child's heart rate has been quite elevated as well so she's referring us to cardiology to just check and see if there has been any heart inflammation from the vaccine as well. After the blood work, we can do a small steroid burst to manage the rest of this flare. Not exactly how I hoped this appointment would go and I'm anxious about not getting a second dose but I understand why the neurologist made the recommendation that she did.

We aren't able to get an appointment with the neurologist until the end of July but the scheduler told me that their office has had a flood of calls due to flares after a COVID vaccine. We are going to delay our child's second dose of the vaccine until we can get direct guidance from the neurologist if there are some measures we can take to help her get the next dose without making things a lot worse. In the meantime, we will be attempting to self-treat and try to calm the inflammatory response until we can get into the office. If anyone has info on that side of things, let me know. Best of luck, ejh, and all!

I came to this site, hoping that other people were talking about this topic. My 13 year old has been symptom free for about 4 years and is having a flare after receiving her first dose of the Pfizer vaccine. We have a message in to her previous neurologist to seek guidance about what to do about a second dose. Will pass along anything I hear and will check to see if anyone here continues to have information or experiences to share.

Thanks! Fingers crossed for a good, healthy time!

I don't know whether I'm being vigilant or paranoid, so I'd appreciate feedback. My 9 year old daughter has PANDAS and is doing pretty well right now--there are still some bumps in the road but she's doing well overall. Dr. Latimer has her on a low dose of antibiotic for the whole school year to try to stave off any reinfection. I have a trip coming up in 2 weeks to visit with several friends that get together once per year. Plane tickets bought, multiple people flying in from various locations. The friend that is hosting this year has been dealing with recurrent strep in her house recently. A few weeks ago her and her 2 kids were diagnosed and treated and one kid was rediagnosed today. My daughter is not coming on this trip with me but I'm feeling anxious about going and coming back carrying strep. I know there are people with strep out there all the time that I'm likely interacting with and don't know it and I certainly don't want to bail out on this trip if possible but I'm feeling worried about not wanting to knock my daughter back at all. Thoughts?

DD has been improving over the summer and the lower stress of being out of school has helped. She did a month of antibiotics and steroids and it was a miserable month--she got so much worse during that time--but seemed to really make some big strides on the other side of it. We have our follow-up with Dr. Latimer on Tuesday and I have no idea or expectations about how that is going to go. I'm wary of going back down the rabbit hole of worsening symptoms if there are more treatments to do and wary of being told that further treatments are more of a risk than are warranted for her. Her OCD has improved a good deal and she is back to spending most of her free time talking about non-OCD things and has cut the confessing behavior down to almost nothing. I am concerned about what is left of the obsessional issues and I'm working with her doing exposures for them. My big concern now is about her reading. This kid was the most avid reader I had ever seen before all this. She'll be going into 4th grade and last year was tested at reading at a late high school level. She read several good size books a week, reading at the table, in the car, whenever. All that changed this summer. She didn't read anything at all for about 6 weeks and just recently she's been reading shorter things--mostly non-fiction books where each section is only a couple of pages. She picked up a couple of fiction books but only read a little bit. She can't articulate why this is happening but she knows it's because something is harder now. I know that ADHD symptoms can pop up with PANDAS kids but I'm not sure what to do with this right now. Is this something that indicates more systemic medical treatment or do folks end up treating the attention issues separately? Anyone else see this with reading?

Thank you for the idea to indulge a bit since she's been struggling so hard. I took your advice and surprised her with a trip to the swimming pool. When we were there she said it was the happiest she had felt in many weeks. That made my day. It made the rougher spots of the day easier to bear.

My 8 year old daughter just saw Dr. Latimer for an evaluation last week and is starting treatment for PANS/PANDAS. The lab couldn't figure out her order form and has been trying to get clarification but hasn't been able to yet so we just went ahead and started on the medications she prescribed--30 days of clindamycin and a 30 day tapered dosed of prednisone. She has had 5 full days of medications at this point and it's been a rough few days. I have read about herxing and don't know if that's what's going on here but things are worse now than when she started the meds---disturbing obsessions, more compulsive behavior (she was previously almost all obsessional), urinary frequency issues, perianal irritation, and just more generally tied up in all of this. I'd say things were mild-to-moderate before treatment and she is solidly in the moderate range now. Still able to go to school and activities but just kind of miserable. We were supposed to have a follow-up at 1 month but due to the doctor's schedule we don't have a scheduled appointment until August. I am so anxious and unsure about everything and just want my daughter back. I was so relieved for a few minutes when the doctor seemed confident about being able to treat my daughter but now I'm so worried that this is all getting worse. I'm giving her a couple kinds of probiotics and trying to help her as best I can. I could desperately use some encouragement and some perspective on what the next month might look like. Thanks.

Do you know if I can request this kind of bloodwork from my regular pediatrician somehow? I know there is the Cunningham panel that you can have your physician order but can these other tests be ordered through normal lab work? My pediatrician is very responsive and I'm sure would help but just isn't PANDAS aware. I was able to get a consult visit with a specialist but not until the end of May and it seems like time is of the essence to 1. capture what's going on right now in the midst of an acute episode and 2. have as much info as possible before showing up to a specialist so answers can come quicker.

Hi! I'm desperate for help and hoping someone here might be able to throw me a lifeline. My daughter had a terrible OCD overnight onset when she was about 4 years old. It was awful. We were on several waitlists for months for a therapist or psychiatrist. Her pediatrician did a strep and Lyme test at my request, both negative. Somehow, by the time the appointments for the psychiatrist and therapist rolled around, she was fine again. I am wracking my brain to try to remember if she got antibiotics for some kid illness during that time and can't remember. I've been on high alert ever since but all has been fine and she was a pretty well-adjusted kid, though a bit on the anxious side not interfering with life that much. Until now--she's almost 9. It crept on a wee bit slower this time (more like a week or so) but then absolutely exploded in the last couple of days. It's constant obsessions, needing to confess constantly, telling me she was bed wetting, food restriction/fears of getting fat. I have the names of some CBT therapists that come highly recommended in my area but my gut tells me I need to look at PANS. She did have the flu just a few weeks ago. I have zero idea how to get PANS help in my area (Maryland/DC). Her pediatrician is great for most stuff but has no idea on this. I need help fast and have no idea where to look. I tried the PANDAS network list but there's one pediatrician, one psychiatrist and one psychologist in my area listed. I have zero idea what to do first. I don't want to waste one second and need to know how to get her the help she needs ASAP. Can anyone please advise on how best to proceed?