Today was not a good day. Ayden Jane woke up this morning saying she had a headache. I let her stay home and she hung out with Noah and Kayla. When I got home, the looks from Kayla and Noah told me that she not been easy to deal with all day.
A little PWS background is that they often struggle with emotional stability. This can mean a lot of things but in Ayden Jane, it means she can go from happy, smooth sailing to a melted down puddle of mush in about 3 second. Typically, she is this way when she is over tired or I am messing with her supplements. Apparently, she gets this way when adjusting to doses of Pitolisant as well. Good to know.
Basically, she was tolerating, in fact asking, to go up on the Pitolisant each week. I think it was all going well and she had no side effects other than that first couple days of a rough morning. Now pneumonia is gone, the steroids and antibiotics have worn off and she should be getting back to her old self. But there is something going on.
So, she woke up with a headache and couldn't go to school. The other odd thing was this evening when she was cold - inside the house! The child that is never cold. Well, never feels cold. The child that will turn blue and refuse a coat. She chose to put on a coat!! Her skin was chilly to the touch. I know that sounds like a strange thing to say but in the past, she looked cold but her skin was always warm to the touch. It was strange, but actually normal.
She is also having a hard time explaining what she is thinking. I believe she is just thinking faster than her mouth can keep up right now. It has happened in the past. Sort of like she has a complex thought and has made connections but she can't find the words to explain those connections. It is irritating for us and frustrating for her. In the end, I tend to get impatient and she tends to cry. Yeah... it's a lot of fun.
Anyway, I am guessing that our quick rise in dosing was not a great idea.
A little PWS background is that they often struggle with emotional stability. This can mean a lot of things but in Ayden Jane, it means she can go from happy, smooth sailing to a melted down puddle of mush in about 3 second. Typically, she is this way when she is over tired or I am messing with her supplements. Apparently, she gets this way when adjusting to doses of Pitolisant as well. Good to know.
Basically, she was tolerating, in fact asking, to go up on the Pitolisant each week. I think it was all going well and she had no side effects other than that first couple days of a rough morning. Now pneumonia is gone, the steroids and antibiotics have worn off and she should be getting back to her old self. But there is something going on.
So, she woke up with a headache and couldn't go to school. The other odd thing was this evening when she was cold - inside the house! The child that is never cold. Well, never feels cold. The child that will turn blue and refuse a coat. She chose to put on a coat!! Her skin was chilly to the touch. I know that sounds like a strange thing to say but in the past, she looked cold but her skin was always warm to the touch. It was strange, but actually normal.
She is also having a hard time explaining what she is thinking. I believe she is just thinking faster than her mouth can keep up right now. It has happened in the past. Sort of like she has a complex thought and has made connections but she can't find the words to explain those connections. It is irritating for us and frustrating for her. In the end, I tend to get impatient and she tends to cry. Yeah... it's a lot of fun.
Anyway, I am guessing that our quick rise in dosing was not a great idea.
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