I always find it fascinating to see the spots and their differences after. If you notice, along the outside of his face those spots are more white in the middle than the deep purple spots. This is part of his mark that has faded the most through treatments, thus not destroying as many capillaries during the laser therapy. The spots of his birthmark that are darker show the deep purple spots. I just thought that was interesting and wanted to point it out. :)
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| *This picture looks much darker than it did on my phone. I will get a clearer picture tomorrow, but you can still see the swelling. |
6 comments:
Hi Jena,
I've read through most your blog but did not see anything about an MRI being done. Was that not necessary? My daughter has a pws almost identical to Elliot's.
Hi! Thanks for reading. Our doctors determined that an MRI was unnecessary since Elliot had displayed no signs of cognitive delay, seizures or other health problems. Every doctor is different though!
Thanks for your response. Your blog has helped me see a different perspective after all the scary things on google. This is all so I overwhelming. Thanks for putting yourself out there and helping new scared moms like myself calm down a bit.
Diana,
You are more than welcome :) It was such a scary time when Elliot was born because I knew NOTHING about pws. Thankfully I was able to find a few moms online who had been on the journey we were headed and it helped my nerves so much. That's why I wanted to create this blog, was to help other parents in our shoes. :)
Jena, back to the MRI question. At how many months or what age did they decide it was not necessary since no seizures or delays. The options that they gave us were 1. Wait till she turns 1 yr for the MRI
2. Do a "feed & bundle" MRI now (6 week old)
I'm not to happy with waiting a whole year or the iffy feed & bundle which would require her to be completely still for clear results.
Hi Diana!
I asked for an MRI at 6 months and was told by both our pediatrician and our laser doctor that it was unnecessary. I doubled checked with them at about a year old and was told the same thing again. I know through research that if the child hasn't had a seizure or delays by 3 years old it is very probable that Sturge-Weber is not present. If I were in your shoes I would probably wait until she is a year and then determine. Certain placement of the birthmark makes it more likely that Sturge-Weber is involved. This is known as trigeminal distribution. Also, a bi-lateral distribution (that is if it is on both sides of the face) leads to an increased risk.
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