water on the brain?

#1 02-13-2005, 05:05 AM

Hi everyone. My son is two years old with PWS on his face, head, and neck. We had a ct scan when he was three weeks old and everything came back fine. I was wondering if that was the only time we needed to do that or should we have it done periodically? Our pediatrician said that the birthmark could cause water on the brain.

Also, Corrinne, thank you for recommending Dr. Buckmiller. We are seeing her next month!!

Thanks,
Valerie

hankbartenbach · #2 02-13-2005, 05:13 AM

Hi Valerie,

I personally have never heard of water on the brain. I have Sturge Weber Syndrome, how I have it is where my PWS is on my face and head, it is on the brain in the same places. A MRI would tell you if your son has SWS on the brain. I would suggest getting the MRI taken before seeing Dr. Buckmiller, so Buckmiller can see the results at the appointment.

Hank

nickbar · #3 02-13-2005, 08:55 PM

I agree, Buckmiller will want to see the films. Is the PWS above and below the eye/eyebrow area?

Glad you are going to see her soon.

Corinne

#4 02-14-2005, 05:34 AM

The closest the PWS comes to his eye is just a little light mark on his temple. the rest is on his cheek, neck, and head. It's not even on his forehead. I haven't had him checked for glaucoma. Should I? Also, what's the difference between a ct scan and an MRI?

Valerie

#5 02-14-2005, 03:29 PM

Hi Valerie. A cat scan is better at identifying "hard" matter. An MRI is better at seeing "soft tissue or other Vascualr issues.". A cat scan is usually used in regard to SWS to check for calcification. AN MRI can usually see the angiomas or other changes in the brain that are indicitive of sws or other vascular issues.
Most docs opt to wait till the child is a year old to do an MRI. If it is done earlier, they usually repeat it when the child is near a year old. The angioma's are not always seen early on. Calcification is also not always seen early on. AT present, the test of choice to rule out SWS, is a MRI with contrast.
For the child to be at risk for Galucoma, the pws uaually has to be on the upper or lower eyelid. If it is "near" the eye, some doctors may still reccomend that you see an eye doctor.
I hope this helps.
Elena

hankbartenbach · #6 02-14-2005, 03:58 PM

Hi Valerie,

It probably would not hurt to get checked for Glaucoma, better to be safe.

Elena was right on about the MRI. Look into it and see what Buckmiller thinks.

Hank

imported_missy · #7 02-14-2005, 10:57 PM

Totally off topic

I had a friend in college who had water or fluid on the brain, but only on one side. When she was tired or drinking or studying, her head would shake... like she was saying to herself, "no, no, no."

If you sat and talked with her long enough, you would also shake your head, in time to hers.

If other people came and sat down with us, they would also shake their heads.

Soon, there would be a table full of people in the bar, library, class, where ever we were, all shaking our heads!!

I haven't thought about Holly in years... I might go "google" her and see if she's out there!

Thanks for the smile, no matter if it was backwards!

Missy