Trying to decide whether to continue treatment or take a break - Vascular Birthmarks Foundation Forum
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Old 08-09-2007, 09:42 PM
snickelfritz snickelfritz is offline
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Default Trying to decide whether to continue treatment or take a break

My 4 year old dd has had 8 laser surgeries on her PWS. We started when she was 1 and went every 3 to 4 months. We have tapered off and now we schedule around holidays and such. I just moved the next one back to avoid surgery right before the new school year.

We want to take a break. She reacts horribly the day of the procedure. She won't cooperate for so much as a blood pressure cuff. The entire day is full of holding her down for them to even do the admission procedure. I tried going into the room while they sedated her and she still wouldn't cooperate, so I left. I don't think it went much better after that, since they told us they need to up her dose of Versed for the next trip.

We're resigned to the fact that it won't completely go away. We do want to keep it from getting darker and thicker. On top of that, our insurance covers it and we don't want to stop and have them decide it really isn't necessary.

Maybe this is just the typical pre-surgery dread creeping in. Is it common to keep going every 3-4 months indefinitely? When talking to the surgeon, the typical answer is "It's looking good. Come back in 3 months."
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Old 08-10-2007, 12:27 AM
nickbar nickbar is offline
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Are you seeing clearing each time? Is it darkening in between treatments? It might just be a good break for both of you and see how things look in 6 mnths? Of course ask your doctor's opinion on waiting too. Dr. Nelson can also give you info (ask the expert) how waiting awhile might help or hinder or neither if you wait. I would keep in mind that once she is older (teen-twenties) treatment might be necessary to control any thickening of the lesion.

take care. Enjoy a "vacation" from the dreadful fight. When she is older maybe she will be able to communicate (and you with her) on what she wants and what is in her best interest.

Corinne
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