Steroids Day 5

[melanie]

Just thought I would update the steroids day 2 (lol) Hes still doing much better.He just left for Basketball and that will be a real test of how hes doing.Last Sunday was a disaster so this week we will see.

 

Melanie

[Suzan]

I am so glad you are seeing an improvement. Good luck today! I hope you see a drastic difference from last week!!

 

Susan

[thereishope]

yeah! How long is he scheduled to be on steroids?

[melanie]

yeah! How long is he scheduled to be on steroids?

 

 

i SEE dR T tomorrow so I guess Ill know more then

 

Melanie

[melanie]

Im sitting here with dan and he seems to be kindof off not what i would like to see.BB wasnt great but wasnt horrible either.He really didnt play to much kept saying hes not good enough.This always seems to be a big obsticle for him not doing things perfectly. Oh well I may have had higher hopes than I should have .

 

 

Melanie

[momaine]

Just thought I would update the steroids day 2 (lol) Hes still doing much better.He just left for Basketball and that will be a real test of how hes doing.Last Sunday was a disaster so this week we will see.

 

Melanie

 

 

Melanie,

Can you remind me what dose he is on? My dd is on day 5 as well. She was on the tapering dose that is given spread throughout the day. Day one was fantastic. Best day in months. It was the only day that she had 8mg at once in the morning. Then I stopped giving Advil at the same time and the dose decreased so that she never got more than 4mg except at bedtime and the results were not quite so good. Definitely noticed things worsened without the Advil and I added it back in on day 3.

 

After that it was not obvious that anything was different than with just the Advil. =( But that first day it was fantastic. She spent a quiet morning doing crosswords and Sudoku's while I painted the bathroom. She even told me she felt really good. This does not happen easily becasue even when she seems to have a good day to me, she still struggling in some way. So, when I ask her how she's doing, she almost always says, BAD. But that day, she said something like...really good.

 

Dd's dose was 24mg the first day, spread out throughout the day. The pills were 4mg pills and each day it decreased by one. I'm thinking that a higher dose, or one given all at once in the morning would make a difference for her.

 

I need to discuss it with her doctor and see where he wants to go from here.

 

Angela

[melanie]

Just thought I would update the steroids day 2 (lol) Hes still doing much better.He just left for Basketball and that will be a real test of how hes doing.Last Sunday was a disaster so this week we will see.

 

Melanie

 

 

Melanie,

Can you remind me what dose he is on? My dd is on day 5 as well. She was on the tapering dose that is given spread throughout the day. Day one was fantastic. Best day in months. It was the only day that she had 8mg at once in the morning. Then I stopped giving Advil at the same time and the dose decreased so that she never got more than 4mg except at bedtime and the results were not quite so good. Definitely noticed things worsened without the Advil and I added it back in on day 3.

 

After that it was not obvious that anything was different than with just the Advil. =( But that first day it was fantastic. She spent a quiet morning doing crosswords and Sudoku's while I painted the bathroom. She even told me she felt really good. This does not happen easily becasue even when she seems to have a good day to me, she still struggling in some way. So, when I ask her how she's doing, she almost always says, BAD. But that day, she said something like...really good.

 

Dd's dose was 24mg the first day, spread out throughout the day. The pills were 4mg pills and each day it decreased by one. I'm thinking that a higher dose, or one given all at once in the morning would make a difference for her.

 

I need to discuss it with her doctor and see where he wants to go from here.

 

Angela

 

 

Hi Angela

 

hes on 20 mg am 20 mg pm I see Dr T tomorrow I dont know what im going to do He was very good for day 2-3 and 4 today he was very ticcccccy whenever you speak he ticcs (verbal)lots of foul language and cant sit still kept smelling his fingers,into his head OMG this is going to kill me.I am not even sure if this is what is soposed to happen because I havent gottn alot of response from other moms and dads about the steroids used with their kids.I know its soposed to be an idicator of how the IVIG will work.I hope you guys ae doing better than us today .

 

Melanie

[momaine]

Melanie,

Hugs to you. Sorry you guys are having such a difficult day.

 

Today with my dd it has been like a regular day that includes Advil. Advil makes life bearable most days. Her tics have not worsened since starting the prednisone. Her vocal tics have been gone since a few days after starting Zith. She still has facial motor tics but they have not worsened. I'm not seeing a noticable difference with the Prednisone today though she's down to a very low dose. She had 4 mg before breakfast and 4mg with her lunch. No more till bedtime then only another 4 mg.

 

My dd has company today and that always makes things easier. Though last night we had company for the night and a good thing came of that. Our company is my dd's friend and her mom. the girls usually sleep upstairs but last night the friend and her mom both fell asleep on our huge couch while they were all watching a movie. I had already gone to bed. When the friend didn't go upstairs for the night, my dd went to her own room and went to sleep alone. She has not slept in her own room without me laying with her while she goes to sleep (without a friend) since summer time. I was shocked to find that out this moring. Pleasantly surprised.

 

Angela

[melanie]

Melanie,

Hugs to you. Sorry you guys are having such a difficult day.

 

Today with my dd it has been like a regular day that includes Advil. Advil makes life bearable most days. Her tics have not worsened since starting the prednisone. Her vocal tics have been gone since a few days after starting Zith. She still has facial motor tics but they have not worsened. I'm not seeing a noticable difference with the Prednisone today though she's down to a very low dose. She had 4 mg before breakfast and 4mg with her lunch. No more till bedtime then only another 4 mg.

 

My dd has company today and that always makes things easier. Though last night we had company for the night and a good thing came of that. Our company is my dd's friend and her mom. the girls usually sleep upstairs but last night the friend and her mom both fell asleep on our huge couch while they were all watching a movie. I had already gone to bed. When the friend didn't go upstairs for the night, my dd went to her own room and went to sleep alone. She has not slept in her own room without me laying with her while she goes to sleep (without a friend) since summer time. I was shocked to find that out this moring. Pleasantly surprised.

 

Angela

 

 

Angela

 

Glad to hear she is doing well.why is she on such a low dosage how much does she weigh?

 

Melanie

[momaine]

Angela

 

Glad to hear she is doing well.why is she on such a low dosage how much does she weigh?

 

Melanie

 

Melanie,

That is what Dr. T prescribed. It started out with 6 (4mg) pills over the course of the day and tapers down by one pill per day for six days.

Dd weighs around 90 lbs. She is 13 years old.

Angela