Dr L..did you have to 30d taper before pex approval

[Fixit]

I scheduled to see doc L in august.....I REALLY want pex, as son is mainly a ticcer.

did you have to do a 30 day taper before she perscribed pex???

i started taper yesterday as per scott's knowledge of her protocal..and he does think it's great i see her...

but at end of taper is our visit...will ds present with enough to warrent pex...scott said he would talke with her on phone any time..

he said she will get get it and has seen enough kids to see where he is even with steriod...

 

i also want to give him a break as his tics and be single but also chain together and they are still about every 10-15 seconds..so imagine after an hour..after a full day...

on the burst it took 21 days..but there were about 5 days of soft spread out tics...i had to actually watch/watch to see them...

currently you can hear him..and you can hear his motors as he snaps his arm/wrist so hard it actually snapps...if it gose to his feet..there can be stomps or what ever...

as he is getting older..i can tell he is becoming more self conscsiousn...and i see him try to hold his head or other parts of his body to have it stop....

 

but i don't want to go in august ..then have to do a taper then and then get pex...that would put us at least into Oct/nov....i want to get what ever i need out of the way..

this onset will be 1 year 4months in august and he will be 10 1/2 by then..

 

i am tired of making the life deciding decesions...if you screw up...months of recovery..months of going back to see if it changes..months of waiting for appointments...months of healing at marginal increments

 

as you may remember i was denied approval for ivig..so might as well go for the big guns.

any input welcome....

Edited July 2, 2010 by Fixit

[LNN]

We did do a 30 day pred taper prior to pex, as well as a T&A. I always felt her support of a pred taper was to give relief as much as it was for any diagnostic information. When she examined my son, she didn't see him at his worst. He was much better than he was before the taper, but our report of how things were before and after were sufficient. Our DS didn't need to be super sick for her to believe us. Even tho his tics had gotten much better after the taper and a T&A in the two months prior - the clinical picture, the health history, the Cunningham test and the physical exam all played a role in her support of pex for my son. I think her intent was to help my son find relief as quickly and as thoroughly as possible. We didn't need to keep him sick until we were able to see her. I would not hesitate to do something that got you to a better place. Besides, a positive response to the prednisone will be a confirming thing. Why would you want to do pex if a poor response to pred left a question mark.

[Fixit]

We did do a 30 day pred taper prior to pex, as well as a T&A. I always felt her support of a pred taper was to give relief as much as it was for any diagnostic information. When she examined my son, she didn't see him at his worst. He was much better than he was before the taper, but our report of how things were before and after were sufficient. Our DS didn't need to be super sick for her to believe us. Even tho his tics had gotten much better after the taper and a T&A in the two months prior - the clinical picture, the health history, the Cunningham test and the physical exam all played a role in her support of pex for my son. I think her intent was to help my son find relief as quickly and as thoroughly as possible. We didn't need to keep him sick until we were able to see her. I would not hesitate to do something that got you to a better place. Besides, a positive response to the prednisone will be a confirming thing. Why would you want to do pex if a poor response to pred left a question mark.

 

THank you so much for replying so quickly and the info..

 

how long after pex did you keep her at home...out of school???

 

even if this time we didn't get a great response...as i have heard people say that each kid they have, responded different and sometimes even if they did the same thing again, ie..steriods.abx it may not have worked the same or at all, like it worked the first time not the second...didn't work the 1st 2 times but worked the third time//

also doc k has said even if there is no response to burst, doesn't mean it won't work....it just may not be as likely to work...

 

that only leads me to why i think alot of studies that they say that failed with ivig as a respones(or pex) didn't work..is because they may need 2...they may need a combo pex then ivig...were all other infectins cleared..are there food allergies

I know i'm just preaching to the quire on the last bit...

 

since i was denied ivig...maybe it was blessing and is pushing me harder to get pex and then ivig if i need it...because...if we got ivig i am almost certain i would need 2.....

Edited July 2, 2010 by Fixit

[tpotter]

No we did not do the 30 day prednisone taper with her (but had done a shorter taper with Dr. K. prior to going to Dr. L.)

[Fixit]

No we did not do the 30 day prednisone taper with her (but had done a shorter taper with Dr. K. prior to going to Dr. L.)

 

 

Thanks...how long was your taper....

what was the time difference..from taper to actual pex....

 

fianlly...not trying to be annoying,,,really....i think it just comes naturalll

how long did you keep ds out of school...

i thought we would have done at least ivig by end of june...and had 6 weeks to recover...

i could go now an pay out of pocket...but i might as well wait 4 more weeks and see doc L..see if it's covered with her and get pex>>>>