Jump to content
ACN Latitudes Forums

URGENT QUICK HELP needed - steroid dosage in next hour!


Recommended Posts

Hi, I'm posting under Colleen's account b/c I don't have time to get set up. I'm her sister, the one with the 9 year old daughter whose recent symptoms include the feeling watched. My doctor has just agreed to change antiibiotics and to try 3 weeks of prednisone. She wants to know what dosage Dr. Latimer prescribes and how she tapers it off. Please advise asap as we're going in to her office in an hour. It is 1:30 EST now.

 

Thanks so much,

Dawn

Link to comment
Share on other sites

Thank you. That is what she recommended too, but when I asked for 3 weeks as Dr. Latimer prescribes,she was concerned about the weaning off that would need to be done, and wondering if she starts out with a higher dosage and what she then tapers off to.

 

Anyone seen Dr. Latimer? I'm so thankful for these quick responses - I'm desperate! My daughter is in so much turmoil, it's painful to watch.

Thanks, Dawn (Colleen's sis)

Link to comment
Share on other sites

I know, I've searched too and can find how long but not the dosage! Anyway, if I don't get it by our appt. time, she can always call it in later - b/c shewants her to \change antibiotics first for 3 days then add the steroid, so if anyone finds this in the next day or so, please let me know! Also, does anyone have contact infor for Dr. Latimer so my doc could contact her directly?

Thanks so much! -Dawn

Link to comment
Share on other sites

found something http://www.latitudes.org/forums/index.php?...art=#entry35792

 

from this post (Kayanne)

We took her to Dr. Latimer on June 5th she prescribed liquid prednisone (5mg/ml) and azithromycin. She also noticed very mild chorea.

 

Started the medication on June 6th:

100mg azith daily—still giving it to her

DH went to 3 pharmacies…the third gave us pedia-pred (5mg/5ml)--we just had to adjust the mls: Day 1—20mg; Week 1—20mg 2x/day: Week 2—10mg 2x/day: Week 3 –5mg 2x/day; Week 4—5mg 1x/day

 

I'm pretty sure Kayanne's dd (if I remember correctly) is small (40 pounds?)...so it looks Dr. Latimer did a higher dose 40mg/day (1 mg/lb, not kg...so it's almost 2 mg/kg, roughly) for week 1, then 0.5mg/lb/day for a week, then 0.25mg/lb/day for a week, then 0.12 mg/lb/day for a week...

 

Maybe someone else can double check my math?

Link to comment
Share on other sites

hi All--

 

Our d is on 10mg 2xs a day for 7 days (64 lbs.) and then tapering down for the next 5 days.

 

The aforementioned prescription seems high compared to what we have been on, definitely check in with Dr Latimer for the correct amount!

Best to you--

Link to comment
Share on other sites

Guest asaxon
Hi, I'm posting under Colleen's account b/c I don't have time to get set up. I'm her sister, the one with the 9 year old daughter whose recent symptoms include the feeling watched. My doctor has just agreed to change antiibiotics and to try 3 weeks of prednisone. She wants to know what dosage Dr. Latimer prescribes and how she tapers it off. Please advise asap as we're going in to her office in an hour. It is 1:30 EST now.

 

Thanks so much,

Dawn

 

Dawn, My neurologist started my child at 1 mg/kg/day for two weeks, then 0.5 mg/kg/day for two weeks, then 0.5 mg/kg/every-other-day for a week, then further tapering for then next week or two (I don't have the bottle in front of me but I will update this post later today). We saw no improvement until the end of the second week, so we decided to extend the 1 mg/kg/day dose for an additional (third) week. This will of course require additional tapering.

 

We are currently in week four of the prednisone treatment (now at 0.5 mg/kg/day). Side effects have been present--insomnia, increased appetite, some hyperactivity--but manageable. The insomnia, however, makes my child very tired late in the day which exacerbates symptoms. There was an improvement at the end of the second week that was dramatic (maybe a 75% reduction from pre-prednisone), and our child was markedly better than we had ever seen her since the explosion of symptoms seven weeks prior. However, the improvement lasted only about four days, and then there was some worsening during week three (maybe down to a 30% improvement from pre-prednisone). But now, in week four, we are seeing a gradual improvement (maybe up to 50-60% reduction), and we grow increasingly hopeful. The 0.5 mg/kg/day dosage is causing less side effects.

 

I have seen studies of prednisone treatment for Sydenhams Chorea ("SC") (another strep-related autoimmune attack on the basal ganglia), that suggest that predisone treatment has a much quicker effect (and perhaps leads to a more complete cure) on patients who are treated with prednisone immediately after showing symptoms of Sydenhams Chorea, rather than those who are treated after having lived with the disease for months. The patients in the study with short-term SC showed a big improvement within days, while the long-term patients in the other study got gradually better over a twelve week period (four weeks of 1 mg/kg/day, then tapering). (SC and PANDAS are different, but the disease mechanisms are thought to be similar if not the same, and these were two unrelated studies, but it is interesting to compare them anyway.)

 

Note: My child is also on a prophylactic course of 250 mg/day penicillin along with the predisone--this is important because this dose of prednisone suppresses immune response and so prophylactic antibiotics are needed to help fight off any new bacterial infection (including, of course, strep). I also recommend a high-quality powdered Acidophilus (the expensive refrigerated stuff from the natural food store) mixed with yogurt to help the digestive tract deal with the antibiotics and prednisone. Acidophilus works great for anyone taking antibiotics.

 

-asaxon

Link to comment
Share on other sites

Every case was different in regards to the steroids she prescribed. Ours was 3 weeks 30mg, 20mg, 10 mg per day. Hope that helps. Andrew is 50lbs.

Bless you! Thank you SO SO much for finding this! We're on our way out the door with print out in hand!

You guys are the best! -Dawn

Link to comment
Share on other sites

Hi Asaxson,

 

that is really interesting about SC being more responsive to pred if caught early. So, it makes one wonder if the same thing would happen if PANDAS were caught early enough, and could be arrested with pred and antibiotics...and if the PANDAS has been going on for several years, the response to pred would take much longer. I also wonder if it is possible for these kids to not respond to pred at all if the pandas has been going on for many years (like Michele's son)??? (And, this might explain why my dd took 2 weeks to respond to the pred...instead of the usual 3-10 days.)

 

I also wanted to check since you mentioned that your child is on 250mg/day of pennicillin for prophylaxis...due to its short 1/2 life, Pen needs to be given twice daily to be an effective strep prophylaxis. In one of Swedo's lectures she mentions this. She said if a single dose of pen. is missed, your child is essentially unprotected against strep for the next several days. I believe the standard pen dose for this use is 250mg 2x daily.

Link to comment
Share on other sites

found something http://www.latitudes.org/forums/index.php?...art=#entry35792

 

from this post (Kayanne)

We took her to Dr. Latimer on June 5th she prescribed liquid prednisone (5mg/ml) and azithromycin. She also noticed very mild chorea.

 

Started the medication on June 6th:

100mg azith daily—still giving it to her

DH went to 3 pharmacies…the third gave us pedia-pred (5mg/5ml)--we just had to adjust the mls: Day 1—20mg; Week 1—20mg 2x/day: Week 2—10mg 2x/day: Week 3 –5mg 2x/day; Week 4—5mg 1x/day

 

I'm pretty sure Kayanne's dd (if I remember correctly) is small (40 pounds?)...so it looks Dr. Latimer did a higher dose 40mg/day (1 mg/lb, not kg...so it's almost 2 mg/kg, roughly) for week 1, then 0.5mg/lb/day for a week, then 0.25mg/lb/day for a week, then 0.12 mg/lb/day for a week...

 

Maybe someone else can double check my math?

 

Sorry I didn't respond to this thread sooner...we were away for the weekend

 

Yes my dd wa 43 lbs at the time Dr. Latimer prescribed the month of prednisone.

 

We saw baby steps of improvement up until there were only 3 doses left (we switched from pedia-pred to prednisone intensol), and then she seemed to improve A LOT! She was so close to her old self that we asked to extend the prednisone....she took it for six weeks...the last three of those weeks she was only receiving 5mg once a day.

 

Even after she stopped the prednisone on July 18th, she was still improving....we now believe that she is 100% back to us.

 

Good luck...I hope it works

Link to comment
Share on other sites

Guest asaxon
I also wanted to check since you mentioned that your child is on 250mg/day of pennicillin for prophylaxis...due to its short 1/2 life, Pen needs to be given twice daily to be an effective strep prophylaxis. In one of Swedo's lectures she mentions this. She said if a single dose of pen. is missed, your child is essentially unprotected against strep for the next several days. I believe the standard pen dose for this use is 250mg 2x daily.

 

Thank you very much, I will check into that.

Link to comment
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
×
×
  • Create New...