Our son born with a PWS. We need help please. - Vascular Birthmarks Foundation Forum
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Old 10-13-2013, 09:45 PM
irolfi irolfi is offline
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Join Date: Sep 2013
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Default Our son born with a PWS. We need help please.

Hi, Our son was born on August 28th 213, so he is 45 days old now. He was born with a PWS in his cheek. We still need to do the examinations to rule out the SWS and glaucoma...also decide what to do about the laser treatments.

We are afraid from the general anesthesia, the risks of it, the possibility that it may harm the child brain.

When should we do the MRI? Should we have to repeat it during life? It can be done only with general anesthesia? Being that this is a procedure that lasts approximately 1 hour, does this long anesthesia harm the child brain?

Regarding the eye: I know we have to measure the pressure of the eye under anesthesia and I know we have to check it regularly. Does this mean that we have to put our son under anesthesia everytime? Does this hurt his brain?

Regarding the laser treatments: We live in Albania, Europe. I know the laser treatments in USA start very early, 1 month of age and are done very frequently, every 4 weeks. In Europe the treatment starts later, 1 year of age, or even 2 and are done every 3 months. Which is the right procedure in this case? ...and most importantly being that these treatments are done so frequently, does the anesthesia hurt the child brain? Do you know any first class clinic in Europe for these laser treatments?

Also one important question I have is regarding the costs of laser treatments. How much does a laser treatment cost with and without anesthesia in USA and if you know in Europe?

God bless you all

Last edited by irolfi : 10-13-2013 at 09:53 PM.
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