Dr. Latimer's Presentation at the IOCDF Conference

[Kayanne]

There has been a lot of discussion about Dr. K's presentation, and I truly appreciate everyone's input because I was not able to go.

 

For those of you who attended, could you comment about Dr. Latimer's presentation. In particular, I am curious if she addressed a success/failure rate with a month of steroids?

[LNN]

I may have missed something, but I don't recall her discussing any success/failure rates on prednisone. She did discuss that it's part of her protocol, but it was during an outline of her thinking/steps she takes. It wasn't discussed in depth, although the parent who co-presented did say that they had very good success with tapers (as we have).

[Kayanne]

Thanks Laura!

[Fixit]

I may have missed something, but I don't recall her discussing any success/failure rates on prednisone. She did discuss that it's part of her protocol, but it was during an outline of her thinking/steps she takes. It wasn't discussed in depth, although the parent who co-presented did say that they had very good success with tapers (as we have).

 

 

i know you've posted this before, but could you tell me again...

 

 

how long from the time you started taper till you saw 90% or so, or complete remission..not sure if you are 100%??.

did healing still continue after taper??

 

And how long from the start of taper till now...6months...9months...1year...i dont remember

 

PS how many tapers have you done..

do you know how many tapers the speaking parent did??

Thanks

Edited July 21, 2010 by Fixit

[Kayanne]

Fixit, I can give you our success story with the pred too.

 

In March/April 2009 was my daughter's first recognizable PANDAS episode. She was having symptoms for about a month and a half before Dr. L prescribed prednisone. We saw steady improvements, by day 27 she was about 75% better, but by no means were we happy (I was gearing my mind up for PEX or IVIG)...she still had a long way to go. On Day 28, she began to speak and socialize again. It was like she suddenly went from 75% to 98%. Since she was so close, we extended the prednisone (5mg 1x/day) for 2 more weeks...she was still about 98-99% at the end of that.

 

Her minor issues were ones that only we her parents noticed...in August, she began to write independently again. By Sept, her reluctance to go to the bathroom had stopped. So for us, yes the healing continued after the prednisone.

 

She had no problems last year at school.

 

Feb, 2010 my other 3 children were positive for strep, and my daughter's PANDAS symptoms ramped up again. We saw Dr. L again, she started another 5 week taper of prednisone. Within 2-3 weeks the PANDAS symptoms were gone. She is still fine.

Edited July 21, 2010 by Kayanne

[Fixit]

Fixit, I can give you our success story with the pred too.

 

In March/April 2009 was my daughter's first recognizable PANDAS episode. She was having symptoms for about a month and a half before Dr. L prescribed prednisone. We saw steady improvements, by day 27 she was about 75% better, but by no means were we happy (I was gearing my mind up for PEX or IVIG)...she still had a long way to go. On Day 28, she began to speak and socialize again. It was like she suddenly went from 75% to 98%. Since she was so close, we extended the prednisone (5mg 1x/day) for 2 more weeks...she was still about 98-99% at the end of that.

 

Her minor issues were ones that only we her parents noticed...in August, she began to write independently again. By Sept, her reluctance to go to the bathroom had stopped. So for us, yes the healing continued after the prednisone.

 

She had no problems last year at school.

 

Feb, 2010 my other 3 children were positive for strep, and my daughter's PANDAS symptoms ramped up again. We saw Dr. L again, and 8 days after we were sure the PANDAS was back, she started another 5 week taper of prednisone. Within 2-3 weeks the PANDAS symptoms were gone. She is still fine.

 

 

THANK YOU, THANK YOU, THANK YOU,......

what a wonderful story

can i pick at a couple of details..

 

1 was there any gap between taper and the 2 weeks of 5mg...

2 how old was your daughter then and how much did she weigh

3 so she finished taper mid june ish...and you had about 7 months w/o a relapse!!!

4 is/was your daughter on any propholactic abx???

 

does doc L think the system is in overdrive..and any thing can trigger it..and body on high alert...(as in, until you do pex)

or does she think this could do it and eventualy the body will stop reacting this way??

i realize you may not know???

if your daught relapses again...will you do the same...or at some point and age do you need to go for more

 

Thanks Kayanne

[LNN]

how long from the time you started taper till you saw 90% or so, or complete remission..not sure if you are 100%??.

did healing still continue after taper??

And how long from the start of taper till now...6months...9months...1year...i dont remember

 

PS how many tapers have you done..

 

We've done two tapers. In both cases, we started to see improvement within 3 days. Serious (50%?) improvement within 10 days, and 100% improvement by the end of the taper.

 

After the first taper, we could see things ramping up a bit but we did a T&A 2 weeks later and pex a month after that and from there we saw steady healing.

 

After the second taper, we enjoyed complete remission, even the brain fog, for a few months. But then things ramped up from a new exposure. We did IVIg shortly after. I love the effects prednisone have had, but I didn't feel comfortable relying on it multiple times a year. We felt we needed to try to boost the immune system with something stronger. If it weren't for the long term side effects of prednisone, I would've been ok using it as an episodic treatment.

 

And how long from the start of taper till now...6months...9months...1year...i dont remember

 

Can't answer this. Prednisone was part of what brought us full remission (once strep was gone in taper 1). It brought us back to baseline in taper 2 and that did not fade until re-exposure. But we have yet to enjoy 6 months symptom free because we can't seem to keep him away from sick people. (another reason we felt IVIg was our next step, since he is so susceptible).

[Fixit]

how long from the time you started taper till you saw 90% or so, or complete remission..not sure if you are 100%??.

did healing still continue after taper??

And how long from the start of taper till now...6months...9months...1year...i dont remember

 

PS how many tapers have you done..

 

We've done two tapers. In both cases, we started to see improvement within 3 days. Serious (50%?) improvement within 10 days, and 100% improvement by the end of the taper.

 

After the first taper, we could see things ramping up a bit but we did a T&A 2 weeks later and pex a month after that and from there we saw steady healing.

 

After the second taper, we enjoyed complete remission, even the brain fog, for a few months. But then things ramped up from a new exposure. We did IVIg shortly after. I love the effects prednisone have had, but I didn't feel comfortable relying on it multiple times a year. We felt we needed to try to boost the immune system with something stronger. If it weren't for the long term side effects of prednisone, I would've been ok using it as an episodic treatment.

 

And how long from the start of taper till now...6months...9months...1year...i dont remember

 

Can't answer this. Prednisone was part of what brought us full remission (once strep was gone in taper 1). It brought us back to baseline in taper 2 and that did not fade until re-exposure. But we have yet to enjoy 6 months symptom free because we can't seem to keep him away from sick people. (another reason we felt IVIg was our next step, since he is so susceptible).

 

Thank you ....that is my fear too...not only sick people...but we always get an episode end of March begining of April...Height of allergy season.that very last week week when it peeks....he does ok feb, begining of march..and you can see he's fighting it..puffy eyes, conjestion...and then his body just gives....

if we could just make it through that week,2 weeks!!!

[Kayanne]

Fixit, I can give you our success story with the pred too.

 

In March/April 2009 was my daughter's first recognizable PANDAS episode. She was having symptoms for about a month and a half before Dr. L prescribed prednisone. We saw steady improvements, by day 27 she was about 75% better, but by no means were we happy (I was gearing my mind up for PEX or IVIG)...she still had a long way to go. On Day 28, she began to speak and socialize again. It was like she suddenly went from 75% to 98%. Since she was so close, we extended the prednisone (5mg 1x/day) for 2 more weeks...she was still about 98-99% at the end of that.

 

Her minor issues were ones that only we her parents noticed...in August, she began to write independently again. By Sept, her reluctance to go to the bathroom had stopped. So for us, yes the healing continued after the prednisone.

 

She had no problems last year at school.

 

Feb, 2010 my other 3 children were positive for strep, and my daughter's PANDAS symptoms ramped up again. We saw Dr. L again, and 8 days after we were sure the PANDAS was back, she started another 5 week taper of prednisone. Within 2-3 weeks the PANDAS symptoms were gone. She is still fine.

 

 

THANK YOU, THANK YOU, THANK YOU,......

what a wonderful story

can i pick at a couple of details..

 

1 was there any gap between taper and the 2 weeks of 5mg...

2 how old was your daughter then and how much did she weigh

3 so she finished taper mid june ish...and you had about 7 months w/o a relapse!!!

4 is/was your daughter on any propholactic abx???

 

does doc L think the system is in overdrive..and any thing can trigger it..and body on high alert...(as in, until you do pex)

or does she think this could do it and eventualy the body will stop reacting this way??

i realize you may not know???

if your daught relapses again...will you do the same...or at some point and age do you need to go for more

 

Thanks Kayanne

 

1. no...we continued on the 5mg for a few days, waiting to hear from the Doctor...we would have stopped then if we were told to, but she said to go for 2 more weeks

 

2. she was six then and weighed about 42lbs

 

3. last dose of pred was on July 18, and I would say yes, we had 6-7 mos without PANDAS symptoms. She even had some mild colds, allergies and the flu...

 

It is a little hard to explain, but she did have a BAD head bang in November, and we gave her the H1N1 vaccine--and we began to see a "slowing down" like a sub-clinical ADD...ya know always cutting it too close and almost or being a few minutes late...but it never got worse, and it actually seemed to get better by Jan. In Jan, we took her to the ped because she was complaining that her urine would still leak onto her leg when she was done...urine culture was negative. I was telling the ped about her slowing down, and how it seemed to be getting better.

Looking back, however, we were seeing a lot of reluctance to eat again...not enough for alarm, but it felt like a several weeks of my husband and I giving each other sideways glances. There was a persistent cough in our house. In Feb, eleven days after confirmed strep in my house, we were sure the PANDAS was back. Who knows? If we didn't get strep again, she may have been fine.

 

4. Yes. June-Sept. 2009 she took 100mg azith daily.

 

Sept-Feb 2010 she took 200mg pen vk 2x/day.

 

Feb she was put on full strength omnicef 150mg 2x/day, and she is still on that...follow-up is in Aug...and I would like to get her back down to a prophylaxis dose of a more narrow spectrum antibiotic...I'm hoping for a cephalosporin...but I don't know if there is such a thing as a narrow-spectrum cephalosporin.

 

From speaking to other parents, whose kids are treated by Dr. L, then I would say yes she believes that other illnesses can set this off once the process has started. She told us a couple of times...this is "immune mediated"

 

She has told us, that in our daughter's case, we will probably be able to manage this with prednisone, and she has mentioned other cases where she treats with pred once a year. However, I do believe that if we need to go the route of IVIG or PEX, she will do it.

 

If we see a relapse, and it has been several months since the last taper, then yes I would do it again. If she didn't respond to prednisone, I would have to weigh the risks vs. benefits of the other procedures---and I would seriously consider doing one of them.