Update on My dd post steroid burst

[momaine]

Jan. 13th began a tapering dose of prednisone. 24mg first day, 4 mg less each day, spread throughout the day.

 

Day 1 noticable change. (stopped advil which was a mistake)

Days 2-3 worse, no advil

Added Advil back in on the night of day 3 and was back to her norm for the rest of the burst. Not seeing the benefits that day one on the highest dose gave her.

 

12 or 13 days after BEginning the burst she has seen marked improvement her ocd. She asks FAR fewer reassurance questions, has begun sleeping in her own bed (with me in the room at first but its upstairs which she has avoided for MONTHS) She showers daily and brushes her teeth more often than previous. Her mood is better over all. I am VERY pleased.

 

Day times have been mostly fantastic. (minus 1 24 hour period a day ago that was horrible and which resolved when I finally remembered to give her an extra Advil) However, sleeping in her own room has brought out some behaviors that she doesn't struggle with when she does not go upstiars. She struggles to go up the stairs, go through her bedroom doorway, and stay laying down. She repeats words more when she is up there as it is stressful. BUT, (and its a big BUT) she has felt able to cope with the difficulties that going upstairs brings and is happy to be sleeping in her own room again.

 

so, the shortened version is. GREAT DAYTIMES, Difficult bedtimes brought on by her willingness to tackle things that she previously felt unable to even contemplate.

 

She has also gone up to the barn where she used to takeriding lessons and ridden horses two days in a row. The first day she had such trouble leaving the barn that she vowed not to go back again. (which is why it has been avoided for some time now) but the next day she kept the lesson she had scheduled and even stayed longer to ride a second horse. Things were less difficult the second day.

 

One thing that breaks my heart through all this is the places that she avoids because of the behaviors that are triggered. One is our own barn which she will only go in if we have company that will go with her. She has an old but much loved horse out there that she misses interacting with terribly. I can't WAIT until she feels empowered enough to go see her every day, and not just from afar.

 

I'm hopeful and scared and I think the post tramatic stress thing is right on the money for us moms. I always feel like I'm waiting for the next bomb to drop.

I can't wait till this nightmare is over.

 

I read Against Medical Advice yesterday. What a sad story that sounds exactly like PANDAS. Too bad they never figured it out and included that in the book. I cired through the whole thing practically.

 

Angela

[simplygina]

I read Against Medical Advice about two months ago. Last night as I was trying to fall asleep (started antibiotics yesterday and I'm just a nervous wreck because I want to see improvements SO BADLY) I'm not sure why but I was thinking about it and I was thinking the same thing. I bet it was PANDAS. After all the kajillion doctors and specialists and meds they had that poor kid on, and the alcoholism and weight gain and self-esteem issues he had to go through, no one ever once that it might be PANDAS? I wondered that the entire time I read the book. Thank God it just went away for him. I think it was great how close he felt to his parents the whole time and I know without a doubt that they were doing the best they could, but I just kept thinking about him smoking and drinking and eating so much crappy food. That had to make the inflammation so much worse. I don't think it is much of a coincidence that once he totally cleared his body of all the toxins by going on the mountain retreat that his body responded and so much of it started to go away. It was such a touching book.

[mama2alex]

MomMaine, Thanks for posting the update! It's wonderful to hear that your daughter has made such great progress - especially since it means that she can enjoy some things that she couldn't previously. I hope she continues to get better.

 

I know what you mean about the PTSD - the stress of this is incredible. Hang in there!