new here - daughter hospitalized

[HT's Mom]

Amazing but sadly not surprising that they would "rule out" Pandas and not run any additional tests. If she has not been on ANY antibiotics at all she needs immediate full testing to pin down the correct antibiotics to try but there is little or no harm on starting her on a course of Augmentin or zith while waiting for results. They may not want to do it because she tested negative for strep but insist - so many of our kids do also but abx help anyway. Meanwhile, you can also contact Dr. T to get a phone consult within a week or so - he will prescribe all necessary tests. and abx.

[norcalmom]

LLMD stands for Lyme Literate MD.

Getting a full Lyme work up- by an LLMD can be very helpful, even if your child doesn't have Lyme.

 

1- they are really the only qualified doctors to rule it out, or if they can't rule it out( because the tests for it are extremely unreliable) they can at least give you a risk assessment for it

 

2- they know more about antibiotics than ANY other doctor you will meet, and if they suspect Lyme or any if its co-infections (which my son had) they will know the best way to treat it.

 

I hope you can get a hold of Swedo. I would imagine she knows a doctor or two that are at your hospital. One of the best pandas researchers, Mady Hornig, is at Columnia. She is a researche not a climician- but between Swedo and Hornig -,they may know someone with privileges at your hospital.

 

The right doctor is key. 99% don't have a clue- or think they do based upon reading the NIMH website. You need an experienced pandas doctor.

Here is Mady Hornigs web page. You could email her and ask if she is aware of any docs with pandas experience at your hospital. Good luck and keep us posted on how your daughter.

 

http://www.mailman.columbia.edu/our-faculty/profile?uni=mh2092

[rowingmom]

I agree with norcalmom. Our LLMD realized right away that bartonella was causing DD's PANS symptoms. She (the LLMD) clinically dx DD with bartonella at our first appointment, and when her tests came back positive for bartonella the LLMD said that if we could bring down the bart load, the PANS reactions would subside. The LLMD used several different abx combinations to get DD to a place where she didn't immediately relapse upon abx withdrawl.

 

DD still has positive IgG bart titers, but they have significantly declined from her original tests, as have her PANS/PANDAS symptoms. No other doctor I know would have had the knowledge to combine abx in the way our LLMD did. LLMDs are very openminded regarding the causative effects of infection (bacterial or viral) on psychiatric disorders.

[rowingmom]

The ILADS website gives referrals of ILADS recommended/trained LLMDs. Please don't let the doctors now treating your daughter bully you into disregarding PANDAS as a possibility. So many of us have found improvement in our children by addressing infection.

[JuliaFaith]

If you are talking about the tests that I mentioned, they are not "PANDAS" exclusive so it seems the word "PANDAS" was making doctor uncomfortable. Any good doctor could run any of the tests mentioned. Most of them could be done with one blood draw.

 

A top LLMD is a good lyme literate medical doctor.