Daisy's testing
We have started a process of getting some testing done on Daisy, relative to her diagnosis of urticaria pigmentosa... some of you probably don't know what I'm talking about, so I'll back up. Ever since she was a few months old, Daisy has had some dark spots on her trunk and diaper area. For awhile, they seemed to be multiplying, but then they seemed to level off. A dermatologist diagnosed this as "urticaria pigmentosa," a condition that ranges from not serious at all to extremely serious; in the not-serious cases, the spots should fade away eventually (possibly not till she's about 18, however), and in more serious cases, there can be problems with internal organs and even cancer.
When the dermatologist initially made the diagnosis, she told me she didn't think Daisy had the serious kind, although blood testing could help make sure of it. I'm not positive how this happened, but somehow it seems we never got those blood tests. I must have allowed myself to be reassured by hearing the dermatologist's opinion... but we never followed up. For a series of reasons too long-winded to go into, I decided to do the blood test recently, and it happened on Friday. It was HORRIBLE. We asked to have someone at the lab who was good with children, and instead they gave us (I quote Mark) a female prison guard. She was so harsh and no-nonsensey, and blaming of us when Daisy cried. Mark was supposed to hold Daisy in such a way that she absolutely could not move, which of course freaked her out, and then they stuck her in a vein that was too small and tortured her for awhile, finally concluding they couldn't get enough blood... she was screaming and crying by then and almost throwing up. Then they looked at her other arm and saw a much better vein--hallelujah! We wondered later why they didn't look at both arms FIRST, and try to determine which would be better to go for.
This time they got enough blood, thank God. The testing is for a level of a certain protein in her blood--tryptase--which will indicate whether it's likely she has a condition called mastocytosis, associated with the urticaria.
The bright lining on the whole unpleasant experience was that, down in the lobby of Kaiser, there were two women playing harp and recorder. Daisy was enthralled; as you may know, Daisy is fascinated by orchestral music right now and the harp is her favorite instrument. We watched for awhile, and we bought the women's CD-- proceeds go toward bringing more live music to hospitals, which seems like a great idea. It was very touching to see the way various people in the hospital were responding to this music.
Daisy has been listening to her harp CD and practicing conducting the music... I may post some video demonstrating her conducting skills.
We get the results of the blood test in a week, but unfortunately, they may not tell us anything definite; they may only simply point the way toward whatever next test is called for. I'm not sure we can go through with a whole bunch more testing, if it's going to be this agonizing every time... well, it will depend on how crucial it really seems to be. I think we're going to consult another dermatologist and try to find out how crucial it is, after we get the results of this blood test.
When the dermatologist initially made the diagnosis, she told me she didn't think Daisy had the serious kind, although blood testing could help make sure of it. I'm not positive how this happened, but somehow it seems we never got those blood tests. I must have allowed myself to be reassured by hearing the dermatologist's opinion... but we never followed up. For a series of reasons too long-winded to go into, I decided to do the blood test recently, and it happened on Friday. It was HORRIBLE. We asked to have someone at the lab who was good with children, and instead they gave us (I quote Mark) a female prison guard. She was so harsh and no-nonsensey, and blaming of us when Daisy cried. Mark was supposed to hold Daisy in such a way that she absolutely could not move, which of course freaked her out, and then they stuck her in a vein that was too small and tortured her for awhile, finally concluding they couldn't get enough blood... she was screaming and crying by then and almost throwing up. Then they looked at her other arm and saw a much better vein--hallelujah! We wondered later why they didn't look at both arms FIRST, and try to determine which would be better to go for.
This time they got enough blood, thank God. The testing is for a level of a certain protein in her blood--tryptase--which will indicate whether it's likely she has a condition called mastocytosis, associated with the urticaria.
The bright lining on the whole unpleasant experience was that, down in the lobby of Kaiser, there were two women playing harp and recorder. Daisy was enthralled; as you may know, Daisy is fascinated by orchestral music right now and the harp is her favorite instrument. We watched for awhile, and we bought the women's CD-- proceeds go toward bringing more live music to hospitals, which seems like a great idea. It was very touching to see the way various people in the hospital were responding to this music.
Daisy has been listening to her harp CD and practicing conducting the music... I may post some video demonstrating her conducting skills.
We get the results of the blood test in a week, but unfortunately, they may not tell us anything definite; they may only simply point the way toward whatever next test is called for. I'm not sure we can go through with a whole bunch more testing, if it's going to be this agonizing every time... well, it will depend on how crucial it really seems to be. I think we're going to consult another dermatologist and try to find out how crucial it is, after we get the results of this blood test.
posted by Sarah Goss at 10:18 AM
1 Comments:
I've had to take little Sarah (I feel like I need to identify her as "little Sarah" on your blog) for blood tests twice. If you need to go again (hopefully not) I would recommend going on a Sunday. They were less busy and two staff members came in to help, overall it was a much better experience.
We'll have out fingers crossed for Daisy that this round turns out okay, please keep us updated!
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