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-   -   5 month old with facial PWS (http://birthmark.org/board/showthread.php?t=6415)

Mary1978 06-05-2013 01:40 PM

5 month old with facial PWS
 
Hi,

I am mum to a beautiful 5 month old baby girl with a confirmed PWS isolated to her on her right eyelid and patchy on her forehead and scalp.After the initial distress of the asthetics of the birthmark, my concern has naturally moved to the possible existence of SWS. We have seen an ophthalmologist, dermatologist and neurologist so far and an MRI has been scheduled for when my baby is 7 months old but I'm not even sure we'll avail of it as I'm concerned about a false negative.her first laser treatment is scheduled for Age 1 under GA. I would prefer a LA option as we could then avail of more treatments when she's younger but this doesn't seem to be available in Ireland. Some questions I hope you can help with:-

1. At what age will be MRI be conclusive? Our neurologist seemed to suggest Age 1 so perhaps we should defer?

2. Is there anyone out there who has a PWS on the eyelid and forehead who doesn't have SWS. Although it appears to manifest itself in 25% of cases I can't seem to find anyone despite trawling the discussion boards.

3. In the absence of a seizure what other signs should I be looking for in my baby? She is a lovely smiley baby but quite needy and I do have concerns about her fine motor development (she uses left and right equally)

4. Is laser administered in the UK under LA and does anyone have any idea of costs for a private patient( we can't avail of NHS as we live in Ireland)

Thanks so much in advance,

A worried Mum

missy 06-05-2013 08:42 PM

Hi and welcome!

I will answer the questions that I can, or try to.

1. If I read correctly, the time frame is either 7 months of age, or 12 months of age? If you're talking a difference of 5 months, I would be comfortable with the decision to defer. I do know of patients with SWS who did not develop either glaucoma or experience seizures until adulthood. If you really feel that you can get a more conclusive result at one year of age, I think you should do that. *That's an opinion... as a parent, I would be comfortable with that.

2. I do know of families that we've helped that have pws in that region with no SWS indicated. If no one posts here in the next couple of days, I'll see if I can track someone down for you.

3. Make sure you always, always, always continue with regular eye exams to check for glaucoma.

4. I have no idea about costs in the UK.

As things progress, if you have more questions of a detailed nature, try to write to Dr. Anne Comi. You can reach her via:
http://birthmark.org/experts.php She is usually very prompt with answers.

And, try not to worry, Mum. I know it's hard not to worry ... that's what mothers are programmed to do! But take a deep breath and go play!

That age is so fun, especially when they are all smiley!

Missy

Mary1978 06-06-2013 01:20 PM

Thank you so much for your reply Missy, I will certainly contact Dr. Comi.

kelmel 07-07-2013 05:02 AM

Hi Mary. My son has a PWS that cover most of the middle and lower part of his face. The V2 and V3 regions. However, it also extends partially over his eyelid and to a small portion of his forehead. He had a MRI at 10 months confirming no SWS.

He is now 3 years old and still quite needy. My 5 year old without a PWS or SWS is also rather needy. So don't let that get you down. :)

Hope this helps.

jenjay23 07-10-2013 07:33 PM

Hi Mary,
Our daughter has PWS'ing on eyelid and forehead, it extends on her head, and down most of her body to her feet. She has undergone 3 MRI's so far (she is 9 now) and it has been confirmed no SWS.
Hope this helps


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