will this prednisone high last?

[laure]

6 days after visiting Dr. B for first time, our dd9 is happy, compliant, reading again after 3 months of not touching a book, playing piano beautifully! It was so wonderful to hear her say after school yesterday "Mom, I read 12 pages of Harry Potter in personal reading time today, and last week I was only reading Amelia Bedelia! I can't wait to read it again tomorrow!" Still won't touch handles, faucets, or brush hair, etc. etc., but if she is pleasant and back to her old self as far as learning potential goes, and done with rages, I would be thrilled at this point. Dr. B put her on 15 days of tapered prednisone and zithromax 250 mg once a day. Not sure how long this will last, but most of these posts suggest that the steroid just takes problems away temporarily, and then they return. (( Is that what we can expect?

[Fixit]

6 days after visiting Dr. B for first time, our dd9 is happy, compliant, reading again after 3 months of not touching a book, playing piano beautifully! It was so wonderful to hear her say after school yesterday "Mom, I read 12 pages of Harry Potter in personal reading time today, and last week I was only reading Amelia Bedelia! I can't wait to read it again tomorrow!" Still won't touch handles, faucets, or brush hair, etc. etc., but if she is pleasant and back to her old self as far as learning potential goes, and done with rages, I would be thrilled at this point. Dr. B put her on 15 days of tapered prednisone and zithromax 250 mg once a day. Not sure how long this will last, but most of these posts suggest that the steroid just takes problems away temporarily, and then they return. (( Is that what we can expect?

 

we did a 28 day taper in july.... august was great and got about 80-90% better....

we lost some ground early sept, really took a dive, so sad..... so at that point we only maintained about 25-35% of the improvement...

we did TA 2 weeks ago...and have gained some ground back in our favor

[laure]

6 days after visiting Dr. B for first time, our dd9 is happy, compliant, reading again after 3 months of not touching a book, playing piano beautifully! It was so wonderful to hear her say after school yesterday "Mom, I read 12 pages of Harry Potter in personal reading time today, and last week I was only reading Amelia Bedelia! I can't wait to read it again tomorrow!" Still won't touch handles, faucets, or brush hair, etc. etc., but if she is pleasant and back to her old self as far as learning potential goes, and done with rages, I would be thrilled at this point. Dr. B put her on 15 days of tapered prednisone and zithromax 250 mg once a day. Not sure how long this will last, but most of these posts suggest that the steroid just takes problems away temporarily, and then they return. (( Is that what we can expect?

 

we did a 28 day taper in july.... august was great and got about 80-90% better....

we lost some ground early sept, really took a dive, so sad..... so at that point we only maintained about 25-35% of the improvement...

we did TA 2 weeks ago...and have gained some ground back in our favor

[lmkmip67]

We are on about day 4 of the steroid taper and have noticed some positive things as well. I hope it lasts. We are on the same antibiotics since we just saw Dr. B, too. I started charting his behaviors and such so we will have something to look back on and see it all in once place. When he is doing better it is easy to forget how low the bad points are, and during the low points it is hard to remember that things can improve. so I want that visual. So while I have no input as to if it will last, as we are in the same boat, I would start tracking. I hope it continues for your daughter.

 

Lisa

[laure]

We are on about day 4 of the steroid taper and have noticed some positive things as well. I hope it lasts. We are on the same antibiotics since we just saw Dr. B, too. I started charting his behaviors and such so we will have something to look back on and see it all in once place. When he is doing better it is easy to forget how low the bad points are, and during the low points it is hard to remember that things can improve. so I want that visual. So while I have no input as to if it will last, as we are in the same boat, I would start tracking. I hope it continues for your daughter.

 

Lisa

 

We must have just missed eachother. Are you doing the Cunningham test? We are all getting tested to see if we are carriers, but her titre #s are definitive, all very black and white apparently, so not sure why we need the Cunningham test...frankly the blood draw is a huge issue, so not sure I want to mess with that with her right now. We are tracking too...I just love having this kissing hugging smart kid back in my house ) Praying for that and yours too...7 year old boy, is that right?

[lmkmip67]

Yep, we were there Thursday. Yep, 7 year old boy. We are not doing the Cunningham test right now. We are all getting tested and Ian is having a few more blood tests too. I will see what those say and go from there. We may do the test if we don't see much improvement this month. I am doing this all out of pocket so am trying to spread it out a bit if I can. His initial titers were not high, so obviously not telling of anything. But again I keep hearing that doesn't mean anything. We are just taking it one day at a time and I am reading, trying to understand everything.

 

We are on about day 4 of the steroid taper and have noticed some positive things as well. I hope it lasts. We are on the same antibiotics since we just saw Dr. B, too. I started charting his behaviors and such so we will have something to look back on and see it all in once place. When he is doing better it is easy to forget how low the bad points are, and during the low points it is hard to remember that things can improve. so I want that visual. So while I have no input as to if it will last, as we are in the same boat, I would start tracking. I hope it continues for your daughter.

 

Lisa

 

We must have just missed eachother. Are you doing the Cunningham test? We are all getting tested to see if we are carriers, but her titre #s are definitive, all very black and white apparently, so not sure why we need the Cunningham test...frankly the blood draw is a huge issue, so not sure I want to mess with that with her right now. We are tracking too...I just love having this kissing hugging smart kid back in my house ) Praying for that and yours too...7 year old boy, is that right?

[Kayanne]

My daughter had very successful outcomes from prednisone tapers-twice. For her, it had lasting results. Both times, her PANDAS was caught early, and we don't have any other health complications.

 

I wish you both the best of luck.

[KaraM]

We got results just from the abx - we had started them a couple of months before seeing Dr. B - he may have put her on them otherwise.

Hopefully, by the time the steroids wear off, the antibiotics will be doing their trick.

It's amazing, slowly but surely the fears slip away...however, some ERP (exposure and response prevention) can help you get there faster. Have you tried any ERP?

Have her rank those fears from most to least. Pick one of the lower ones and slowly try to overcome it. For example, if she won't touch a door handle, see if she can touch some place on the door close to it. Get closer and closer each time. Then touch it quickly. Then touch it for a second...etc.

 

There are some books for kids - like Up and Down the Worry Hill (may be a little young for her) or the workbook "What to do when your brain gets stuck" that can help with the ERP.

 

Kara

[laure]

All good news from you moms! Kayanne, did your daughter have any ocd symptoms? How long were your prednisone tapers? My daughter will not admit to having ocd openly yet, it's like if she doesn't talk about it, it isn't real...which is a not so bad thing at school, because there she can feel normal. So the books Kara suggests, (which actually I bought in August) are sitting on the table. dc mom I think, said it might take awhile until she is fealing somewhat, before she can tackle the ocd and get any type of therapy. Do you moms think that 250 mg. zithromax once a day is enough for an 84 pounder? Something is working wonderfully, just don't know what it is right now.

[Kayanne]

All good news from you moms! Kayanne, did your daughter have any ocd symptoms? How long were your prednisone tapers? My daughter will not admit to having ocd openly yet, it's like if she doesn't talk about it, it isn't real...which is a not so bad thing at school, because there she can feel normal. So the books Kara suggests, (which actually I bought in August) are sitting on the table. dc mom I think, said it might take awhile until she is fealing somewhat, before she can tackle the ocd and get any type of therapy. Do you moms think that 250 mg. zithromax once a day is enough for an 84 pounder? Something is working wonderfully, just don't know what it is right now.

 

Yes, she had OCD...and possibly one tic (but I'm still not sure if it was a tic or a compulsion). The OCD shut her down, so there was no communication...we had no clue what was going on in her brain...so I can't answer if she was in denial...I don't think so, though.

 

The first taper was for 4 weeks...but we and her doc extended it by 2 weeks. The second taper was 5 weeks...the last 2 weeks were every other day.

 

I do think other parents have used higher doses of zithromax...but the 250 a day is probably okay. Perhaps someone with more experience with zith will chime in on that one.

[laure]

6 days after visiting Dr. B for first time, our dd9 is happy, compliant, reading again after 3 months of not touching a book, playing piano beautifully! It was so wonderful to hear her say after school yesterday "Mom, I read 12 pages of Harry Potter in personal reading time today, and last week I was only reading Amelia Bedelia! I can't wait to read it again tomorrow!" Still won't touch handles, faucets, or brush hair, etc. etc., but if she is pleasant and back to her old self as far as learning potential goes, and done with rages, I would be thrilled at this point. Dr. B put her on 15 days of tapered prednisone and zithromax 250 mg once a day. Not sure how long this will last, but most of these posts suggest that the steroid just takes problems away temporarily, and then they return. (( Is that what we can expect?

 

we did a 28 day taper in july.... august was great and got about 80-90% better....

we lost some ground early sept, really took a dive, so sad..... so at that point we only maintained about 25-35% of the improvement...

we did TA 2 weeks ago...and have gained some ground back in our favor

[laure]

All good news from you moms! Kayanne, did your daughter have any ocd symptoms? How long were your prednisone tapers? My daughter will not admit to having ocd openly yet, it's like if she doesn't talk about it, it isn't real...which is a not so bad thing at school, because there she can feel normal. So the books Kara suggests, (which actually I bought in August) are sitting on the table. dc mom I think, said it might take awhile until she is fealing somewhat, before she can tackle the ocd and get any type of therapy. Do you moms think that 250 mg. zithromax once a day is enough for an 84 pounder? Something is working wonderfully, just don't know what it is right now.

 

Yes, she had OCD...and possibly one tic (but I'm still not sure if it was a tic or a compulsion). The OCD shut her down, so there was no communication...we had no clue what was going on in her brain...so I can't answer if she was in denial...I don't think so, though.

 

The first taper was for 4 weeks...but we and her doc extended it by 2 weeks. The second taper was 5 weeks...the last 2 weeks were every other day.

 

I do think other parents have used higher doses of zithromax...but the 250 a day is probably okay. Perhaps someone with more experience with zith will chime in on that one.

[momaine]

Unfortunately for my dd, the benefits of prednisone did not last. She did however suffer from PANDAS for over 3 years before being diagnosed and treated with antibiotics and prednisone. It was extrememly helpful though while we waited for IVIG, to be able to use prednisone to keep the sanity in our home. It really was a wonder drug for my dd.

 

Angela

[laure]

Unfortunately for my dd, the benefits of prednisone did not last. She did however suffer from PANDAS for over 3 years before being diagnosed and treated with antibiotics and prednisone. It was extrememly helpful though while we waited for IVIG, to be able to use prednisone to keep the sanity in our home. It really was a wonder drug for my dd.

 

Angela

[KaraM]

Dr. B put my dd8 on 350 for a month then down to 200 mg. of Zithro. She's about 60lbs. But again, she did not do the steroids and she had already been responding to the 350 for 5 days then 175 mg dose the pediatrician had prescribed to her a couple of months before. So I think their cases are a little different...