Dedee Posted February 21, 2011 Report Posted February 21, 2011 I had left a message for the NP who is seeing my dd for PANDAS that I thought we should try a steriod injection because she kept getting worse and it was starting to affect her in school. Her assistant called me back on friday and told me that she agreed and to bring her in. When I got there the NP told me that her protocol is to give the steriods slowly IV. I agreed because we were drawing more labs and the Cunningham test anyway, so the stick was coming no matter what. So she got her IV steriods and everyone kept telling me that I may see worsening of symptoms for a few days. However, she really had a pretty good week-end. We had to go out of town for a wedding, and as usual she was stuck by my side the entire time but no rages, defiance or tantrums. She hand one episode of anxiety, so clearly the seperation anxiety and panic tendencies are still there but her frustration tolerance is much better. For those of you who have used steriods, do you think we will continue to see improvement or is this all we will get? The NP said we could do another round in a couple of weeks if she does well with this. She was very worried that she may get worse, but so far we have only seen improvement. She still has a long way to go, but at this point we are willing to take anything. Dedee
dcmom Posted February 21, 2011 Report Posted February 21, 2011 Dedee, good news- what was the dosage? My one daughter improved dramatically, immediately after the iv steroids - only to relapse (although nowhere near as bad, due to illness, within two weeks. My other daughter had a horrific day immediately following IVs, but since then, over the last month has improved steadily. Both girls still have OCD- but ARE so much better, stable, and pretty happy most of the time. The solumedral really pulled us out of crisis- we were not able to function prior. We are now trying to clear the remaining OCD.... I think you will continue to see improvement (with some hiccups along the way).
Christianmom Posted February 21, 2011 Report Posted February 21, 2011 Dedee and dcmom, What was your dosage of IV-steroids?
Dedee Posted February 21, 2011 Author Report Posted February 21, 2011 She gave 80mg SoluMedrol and said we could repeat in one to two weeks. I just cant imagine going through that again. They had to sedate her to put in the IV and she still fought like crazy. Just getting her back in the office is going to be a major issue I'm sure. If we did it over several days we could leave the IV in. I guess I will just watch and see what progress we make.
dcmom Posted February 21, 2011 Report Posted February 21, 2011 Dedee how much does your dd weigh? Do you know how many mg/kg it was? Just wondering if she tolerated it well if there is room to go higher. Possibly ask about having it done in home- might be more tolerable for your dd. Hopefully sh will improve to a place that will make the medical intervention easier....
Dedee Posted February 22, 2011 Author Report Posted February 22, 2011 My daughter weighs 52 pounds. If she gave the same amount every one to two weeks for a total of four times (like she said is her protocol) that would be close to the 7mg /kg you mention. My daughter had a major rage last night which was discouraging but this morning was a great morning again. Two steps forward, one step back......
dcmom Posted February 22, 2011 Report Posted February 22, 2011 My girls had 7 mg/kg per dose x 4 doses
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