Steroids are working

Sulwen sports a new tummy and chin on steroids while playing with toothbrushes - good dental hygenie is important at all ages.

It's Hailey Mama here with an update on Sulwen and how she is doing. As you have noted, she has been a very busy little girl with a very busy social calendar. Yesterday, she made the journey into Santa Rosa where she bravely, without tears, gave a lot of blood for lab work.

It appears that the steroids are working. They are producing all the side effects they are known for: increased appetite, mood fluctuations, restlessness, irritability. They also seem to be keeping her symptoms at bay: no more fevers, rashes and physical discomfort.

For me, the most difficult side effect is the way it affects her mood. You could say that she throws "tantrums on steroids." Sulwen is prone to fairly aggressive outbursts several times a day/night that last as long as 30 minutes and involve all of her being. She is quite uncontrollable and this little package of 21 pounds is the strongest little force when the rage and adrenaline hit. It is physically and emotionally exhausting for everyone. I believe this is why Sulwen has spent most of her days eating, sleeping and just "being" without much play or other activities - she just doesn't have the energy for more. I know Tanna and Stephen long for a quiet night with only a few tears perhaps. Hopefully this will come when Sulwen tapers off steroids.

The great news is that when she isn't suffering from an attack, she spends time smiling and being content at home with all the activities going on around her. In fact tonight after a bad spell, she came through it and played more than she has since she has been home. Stephen, Tanna and I played with her using her music machine and other toys. She crawled and tried to walk, alternating going between the three of us (but mostly her parents). She was one happy little girl.

And then the phone rang...it was the doctors with the lab results from yesterday. Guess what? Steroids are working! Sulwen's counts were ALL within normal ranges - normal. They thought she looked great on paper! In fact the doctors, Tanna and Stephen made a decision to start tapering Sulwen off her steroids tonight. It is a very small percent that they reduce at a time, but it is a start. Sulwen has an appointment at LPCH Rheumatology Clinic next Thursday, so they will see how she does with reduced doses for just over a week.

I left the family tonight as they were headed off to their meditation and to hopefully lull Sulwen into a restful sleep for a few hours. I pray that their night has fewer outbursts with reduced intensity. They all could use a break - especially to reflect on the good news that tonight brought.