Where are Dr. Latimer's patients?

[Stephanie2]

Mom MD, did you go into it planning to do 2 treatments 8 weeks apart or did you decide to do the 2nd tx when the first didn't bring about the results you were looking for? Why 8 weeks instead of 3 months like Dr. K recommends? I'm just wondering what Dr. Latimer's/your thinking is on this. We just did 1 mg/kg for my 5 year old and I'm not sure what to do from here. Considering waiting 2.5 to 3 months and then doing 1.5/kg if needed.

 

Thanks,

Stephanie

 

I don't know what she recommended but we did 1mg/kg for two days (a total of 2mg/kg). He had two treatments 8 weeks apart. He is doing really well.

[dcmom]

Stephanie-

 

I am here! My kids were patients of Dr L's, we were away for the weekend.

 

My kids are doing really well, though not 100%, and not cured. I read the forum every day, but have tried to limit my time and my posting to focus on life for a bit.

 

My girls both had PEX, and that was a lifesaver for them. They still suffer from some ocd, in fact both are on a steroid burst now to see if we can push the progress a bit.

 

I can't say enough about Dr L. She has saved my kids and my family. She has fought for them with our insurance co. Sure, she is busy and not perfect- but when we needed her- she really was there for us.

 

I plan to post an update on both girls in a month or two, after we are a few weeks out from the current steroid bursts.

[MMC]

still here. Dr L. tried to get IVIG for both kids, but insurance denied back in December. Insurance approved plasmapheresis for son (go figure)... did this at Georgetown end of January, have seen about 25% improvement, better than nothing but still a long way to go. Dr L. had referred us to immunologist in NC, so we visited her this year and she found more immune deficiency evidence...she referred us to local neurologist who believes in PANDAS and treats with IVIG. IVIG was approved by insurance this time and son completed two treatments last week. Did 1mg/kg for two days, although had to stop half way thru last bag b/c of bad side-effects. We are hoping for more improvement...will eval in 4 to 6 weeks and do again if needed. We are still patients of Dr L's and get our abx thru her. Dr's in NC take insurance...very expensive to go to Bethesda and take both kids to Dr L. but we will go again if needed. Dr L. definitely took a lot of time with us and answered all our questions with compassion and got us on the right path...but we still have a ways to go.

[michele703]

Still here too! My son still is a patient of Dr. Latimer's and he is doing much better. He just had IVIG yesterday and broke out in hives. However, he has been on antibiotics and prednisone and we have seen great results from those two meds. However, not totally "cured" so Dr. L spoke with our local doctor here in Richmond and we had the IVIG infusion here! She was hard to contact at the beginning...but we stuck with her...and very happy we did so. She is a wonderful, caring and knowledgeable doctor. We have been a total of 4 times and will contact her if we have a set back.

[melanie]

Still here too! My son still is a patient of Dr. Latimer's and he is doing much better. He just had IVIG yesterday and broke out in hives. However, he has been on antibiotics and prednisone and we have seen great results from those two meds. However, not totally "cured" so Dr. L spoke with our local doctor here in Richmond and we had the IVIG infusion here! She was hard to contact at the beginning...but we stuck with her...and very happy we did so. She is a wonderful, caring and knowledgeable doctor. We have been a total of 4 times and will contact her if we have a set back.

 

 

What dosage did you use with the IVIG?

[michele703]

Still here too! My son still is a patient of Dr. Latimer's and he is doing much better. He just had IVIG yesterday and broke out in hives. However, he has been on antibiotics and prednisone and we have seen great results from those two meds. However, not totally "cured" so Dr. L spoke with our local doctor here in Richmond and we had the IVIG infusion here! She was hard to contact at the beginning...but we stuck with her...and very happy we did so. She is a wonderful, caring and knowledgeable doctor. We have been a total of 4 times and will contact her if we have a set back.

 

 

What dosage did you use with the IVIG?

Hi Melanie, Sorry it takes me so long to get back. I dont get a chance to get on here very often. My son was given 2mg/k for IVIG. He became very ill that evening after IVIG(nausea, vomitting, severe headache, body aches) These symptoms are now tapering off...however, a lot of his PANDAS symptoms seem to be reappearing. I have read on the forum that this is normal...I hope so!

[tpotter]

We're still here, too. One of my kids got IVIG last June, and then PEX in August (Did PEX after IVIG stopped working, instead of doing more IVIG.) The other got PEX in September. Both did incredibly better, but both starting to have major problems again. One is scheduled for PEX in the next few weeks, and I need to schedule the other for PEX or IVIG. She has been incredible. Even testified (by telephone) for my son's Due Process hearing (spent 1 1/2 hours answering tons of questions.) She was incredible (the school district didn't believe that he was really sick, and that PANDAS exisited...thought I made it up!) Boy, she set them straight!

 

As far as I know she is the ONLY one who does PEX. Does anyone know anyone else who does it?

[NancyD]

We had our first appointment with Dr. L last week. It was an exhausting trip...18 hours of driving in 2 days. Nearly had to hospitalize dd before we left for Bethesda. Severe rash all over her trunk (plus something nasty looking on her back that I thought looked like impetigo), combined with long rages and abusive behavior. I had taken her to pediatrician's and asked if it was scarletina, impetigo, or pityria rosea. Was told it was probably due to "first-time exposure to sun". I knew it was not that!

 

I was VERY IMPRESSED with Dr. L! She took her time, was very thorough, asked insightful questions, and seemed very open minded. She said the rash is definitely pityria rosea (mother spot on back). Unfortunately there is nothing we can do for that and it will take about 6-8 weeks to go away. She agreed we should take a break from the monthly infusions to let the antibodies settle and see what happens. Told us that dd14 has "catastrophically" low D levels and put her on 50,000 units per week. Also put her on 1000 mg XR Augmentin 2x daily and so far, she is doing great on it! After a horrible two weeks dd seems pretty stable. 'Course, the last high-dose infusion in March may have also kicked in.

 

We have a follow-up call scheduled for June and will decide then if we move forward with pheresis and/or future IVIg infusions. She thinks dd will be a good candidate for pheresis. She does believe in high-dose infusions and not doing them monthly.

 

Forjpj, it was awesome meeting you and your family and seeing how well your ds is doing!

 

Nancy

Edited April 28, 2010 by NancyD