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-   -   Our son born with a PWS. We need help please. (http://birthmark.org/board/showthread.php?t=6528)

irolfi 10-13-2013 09:45 PM

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

moondancer 11-23-2013 09:33 PM

My son has had 2 checks for glaucoma, both time when he was awake. First time they put a metal thingy to open his eyes (he was less than 1 day old!!) The second time, i breastfed him and he opened his eyes long enough for the doctor to see them. I am not aware that they have tobe under GA for the check up.

irolfi 11-24-2013 08:55 AM

Thank you very much for your answer.

kelmel 03-08-2014 03:28 AM

Hello. I hope you have found the answers you needed by now. if not, here are a few more..

My son has gone under GA more than a dozen times and no side effects so far. The GA is necessary for the MRI. We waited 10 months to have the MRI and I am so glad we finally did. Knowledge of either having SWS or not puts you at ease. Not knowing is very hard.

It is not necessary to have GA for the glaucoma test. With a somewhat willing baby and a patient provider, it can be done. That being said, I have an unwilling baby and have had the test done while he was under GA for a laser treatment.

I know there are good dermatologists in Europe who do treat very early, but do not know their names. if you would like more info, send me a PM and I'll look into it for you.

Good luck.


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