Steroid burst improvement

[michele]

So sorry to hear about the bad times you are having. I don't have personal experience with the steroid burst but have talked to someone who had it and she said her symptoms were much worse before getting better. We did get the email from Dr. K to so it but haven't yet because I don't know what I'd do next since we don't seem ready for the IVIG yet. However, I am a bit fearful of the worsening of symptoms. My son has rages now and it is all that I can do to settle him. I pray this passes quickly and you get prugress around the corner. The girl I spoke to thought she was greatly improved with the steroid burst. She remembers it being more helpful then the IVIG. All the best.

 

Michele

'

Yesterday was day 4 on steroids - absolutely no improvement whatsoever yet. She had a fever 100.6 Sunday evening and c/o headache, sore throat, nausea as well as a decrease in appetite. My ex brought her home a little early. I brought her to pediatrician yesterday. Strep test was negative; I asked him to culture it, so he did send out one for culture. He also did a flu test, which was negative. Her eyes have had a reddened, sick look since he brought her home Sunday night, but fever was gone Monday.

 

No improvement noted yet on the steroids. Yesterday morning, I told her about the MD appointment that morning when I made it (she was in the room while I was on the phone making it and I confirmed after I got off the phone when she asked about it), but by afternoon, she had forgotten about it and became very upset that she was "not told". She became aggressive and attacked me, and when I asked her what she was doing, she said she was going to kill me. When I asked why, she said because I tried to kill her last night. Her talk during these rages gets more and more extreme and alarming. She refused to shower, but continued grabbing at me as I tried to shower, grabbing my back as I entered the shower and hitting me with her fists, kicking me. I finally got her to put on underwear and change from a pj shirt into a regular shirt, but still refused socks and shoes (crocs were the compromise) and to brush her hair. Night before last, she was pulling out strands of hair just after one episode and before another.

 

Our pediatrician is ordering a CT scan today (partially at my request to rule out anything there) and I am working, so I will have to leave work and take her from there (I am working in the clinic in her school) if it is today. We are also dropping her prozac from 20 mg back down to 10 mg where she had been.

 

I have not heard a thing from Dr. Swedo about an MD in our general area who handles PANDAS cases. Our pediatrician said he will increase his efforts to reach Dr. K over next couple of days; I emailed Dr. K yesterday telling him that our pediatrician has been trying to reach him and hopefully they will connect in next couple of days as our daugther seems to be getting worse and her dad and I are concerned. She had no memory of him returning Sunday night for one of the episodes. Sometimes, she will recall later.

[browneyesmom]

CT scan is scheduled for Monday morning, March 16 at 8:30 am ET. Her dad said that he will be there also.

 

Goofy me, forgot to give her the steroid this morning (she is down to 20 mg today), so my husband just brought it over to her dad (she is with him for visitation right now). I don't know what I was thinking! I guess I was so focused on trying to get her out of bed (she was refusing to get out of bed - would anyone not on this board actually believe that?) to get her to school that I forgot about that.

 

The dose was 60 mg for 2 days, 40 mg for 2 days, 20 mg for 2 days, 10 mg for 3 days. This is day 5. I do wonder if she had some viral situation over the weekend confusing the issue, but there is no question that she has been more aggressive recently. No idea if it is the steroid or the prozac, but we reduced the prozac back from the 20 mg to the 10 mg she had been taking, just in case.

 

I'm starting to consider homebound instruction, even though I have been adament about wanting to keep things as 'normal' as possible for her. I'm not ready to jump into it just yet, but I am concerned about how she is falling behind in her classes and the daily refusal to attend school, so I am going to find out what is involved and if she would qualify.

[browneyesmom]

Yesterday was day 6 on the steroids, down to 20 mg. Today, day 7, she will go down to 10 mg for 3 days, then stop.

 

School refusal yesterday morning was difficult, but no aggression. Once she was finally dressed and in the kitchen eating, she kept pacing quickly in circles around the island in our kitchen. I asked her to sit at the table for breakfast, but got no response, so I let her be. I did see urinary urgency, lots of time in the bathroom. No aggression last night either; she seemed pretty happy during dinner, but after dinner, while doing homework, she seemed to have a difficult time suddenly with one part of a spelling worksheet. She wanted to hang something in the "welcome" instead of the "steeple" of the church. I tried to talk her through it, but it wasn't working. She started hitting her head and calling herself stupid. She would not stop. I held her hands, she tried to use her knees to hit her head. I called my husband to come help hold her. She tried to bite herself. It went on for nearly an hour.

 

I called my ex at one point when she had settled down a bit to report to him, but she came back in the room, with only her underpants (goodnights because she's had some incontinence recently and requested those) and started again. I had to put the phone down and call my husband to come help again. She did not seem to notice or mind that she was not dressed, which is unusual for her. We dressed her. Tried to talk with my ex about temporary homebound education, but he refused to consider it, saying he sees that as a 'bad thing'.

 

Unfortunately, I see this pressure on her, the probable social issues, the falling behind in schoolwork, etc. as a bad thing. Initially, I too, wanted to keep her at school, but at this point, I am willing to try something else for a while to see if we can get her caught back up in her classes. It's nearly impossible to get all her homework done in the evenings at this point. I would love to see her getting more rest; I really think she needs that. I pressed the issue pretty hard as I am so concerned about her in the current situation and want to try something else to give her a break and decrease the pressure on her. He said he wants to see how she is at the end of the steroid burst, which she completes this Saturday. I agreed to do that.

 

She came home from school yesterday upset that her friend told her she overheard the homeroom teacher tell another teacher that our daughter is a 'drama queen'. If that's true, it's completely inappropriate. We need to look into that now also. I've decided to withdraw from the two classes I signed up for this spring. I've been unable to do any work on them and don't foresee being able to give them any attention anytime soon. This has to take priority now...almost time to wake her.

[michele]

I totally understand that the school just doesn't get it. Probably because it is psychiatric and the school probably is used to behavior issues and not pcciatric conditions in kids. I wanted to tell you that the IEP group on Yahoo has mentioned to me several times to look into cyber schools. Not sure about them myself and maybe others here could explain more. I just know it has been brought up as an alternative. I hope you see improvements very soon.

 

Michele

Yesterday was day 6 on the steroids, down to 20 mg. Today, day 7, she will go down to 10 mg for 3 days, then stop.

 

School refusal yesterday morning was difficult, but no aggression. Once she was finally dressed and in the kitchen eating, she kept pacing quickly in circles around the island in our kitchen. I asked her to sit at the table for breakfast, but got no response, so I let her be. I did see urinary urgency, lots of time in the bathroom. No aggression last night either; she seemed pretty happy during dinner, but after dinner, while doing homework, she seemed to have a difficult time suddenly with one part of a spelling worksheet. She wanted to hang something in the "welcome" instead of the "steeple" of the church. I tried to talk her through it, but it wasn't working. She started hitting her head and calling herself stupid. She would not stop. I held her hands, she tried to use her knees to hit her head. I called my husband to come help hold her. She tried to bite herself. It went on for nearly an hour.

 

I called my ex at one point when she had settled down a bit to report to him, but she came back in the room, with only her underpants (goodnights because she's had some incontinence recently and requested those) and started again. I had to put the phone down and call my husband to come help again. She did not seem to notice or mind that she was not dressed, which is unusual for her. We dressed her. Tried to talk with my ex about temporary homebound education, but he refused to consider it, saying he sees that as a 'bad thing'.

 

Unfortunately, I see this pressure on her, the probable social issues, the falling behind in schoolwork, etc. as a bad thing. Initially, I too, wanted to keep her at school, but at this point, I am willing to try something else for a while to see if we can get her caught back up in her classes. It's nearly impossible to get all her homework done in the evenings at this point. I would love to see her getting more rest; I really think she needs that. I pressed the issue pretty hard as I am so concerned about her in the current situation and want to try something else to give her a break and decrease the pressure on her. He said he wants to see how she is at the end of the steroid burst, which she completes this Saturday. I agreed to do that.

 

She came home from school yesterday upset that her friend told her she overheard the homeroom teacher tell another teacher that our daughter is a 'drama queen'. If that's true, it's completely inappropriate. We need to look into that now also. I've decided to withdraw from the two classes I signed up for this spring. I've been unable to do any work on them and don't foresee being able to give them any attention anytime soon. This has to take priority now...almost time to wake her.