PANDAS - WWYD re Latimore's 4 mo. wait list?

[Anonymous]

We have an HFA/ADHD young child who is very prone to strep. He has it now. The symptoms were different this time - no fever and sore throat to start but it was paired with sudden onset of tics and digression in behavior.

Our mainstream ped put us on a standard course of amoxicillin, of course.

I called Latimore's office but the first new patient appt is end of Jan and we would be 30 something on the wait list.

Any other good options if we choose to go down this road? Any constructive advice (not that anyone on this board would give anything different, other than trolls)?

Thanks!

[Anonymous]

My son who is now 20 was diagnosed with pandas in third grade. He was kept on antibiotics until age 15. I am not aware of any long term effects. The main thing is that you need to keep the amount of strep infection in the blood stream at a controlled level. We used dr. Paul pebbles who is a pediatrician in Bethesda.

[Anonymous]

Anonymous wrote:We have an HFA/ADHD young child who is very prone to strep. He has it now. The symptoms were different this time - no fever and sore throat to start but it was paired with sudden onset of tics and digression in behavior.

Our mainstream ped put us on a standard course of amoxicillin, of course.

I called Latimore's office but the first new patient appt is end of Jan and we would be 30 something on the wait list.

Any other good options if we choose to go down this road? Any constructive advice (not that anyone on this board would give anything different, other than trolls)?

Thanks!

Wait list. Call back daily to see if there are cancellations.

[Anonymous]

Yes--definitely put yourself on the wait list and call several times a week to see if there is an opening. Their wait list management isn't the best, but they do get cancellations fairly often because a lot of patients come from long distances. Because you are near, you are an ideal fit in for a sudden cancellation.

In the meantime, see if you can locate a pediatrician who is willing to treat PANDAS with longer-term antibiotics at least temporarily while you are waiting to Dr. Latimer.

[Anonymous]

I'm pretty sure with some sleuthing on the local Yahoo boards, you can find a doctor who would keep him going on the antibiotics.

While you wait or search for an interim dr, you can get started now on the probiotics. Be sure and get one with S. boulardii. Our DS is on long-term antibiotics for Lyme disease (he had tics plus dozens of other symptoms) and his dr recommends Primal Defense Ultra which I buy from Amazon. Make sure you give it 2 hours away from antibiotics. We do it at bedtime along with kefir drink to swallow it down.

Also, we found magnesium helped some with the tics (although antibiotics worked best). We tried Natural Calm but it gave him diarrhea so we switched to Magnesium Malate.

Good luck - it so stressful.

[Anonymous]

Also, sign yourself up on latitudes.org. They have an active PANDAS forum and some are from the DC area. They may be able to give recommendations for a sympathetic pediatrician, likely by private message. An unwritten rule of the boards is to not refer to doctors by name, although the best known names like Latimer will be referred to by initial--she's Dr. L.

[Anonymous]

Re the latitudes forum...is that still active/more active than the various fb groups devoted to pandas?

[Anonymous]

also any neurologist can order the antibodies blood test --- so find someone else to get started.

[Anonymous]

Anonymous wrote:Re the latitudes forum...is that still active/more active than the various fb groups devoted to pandas?

There is a local facebook group, which is one place you would want to be for this. It's been a couple of years since I've done this, but at the time they were all closed groups and you had to be recommended to join.