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My name is Sarah, mother of two sons: Jack 3 and Finley. Finley was one on 24th January 2007 has been diagnosed with severe brachycephaly (a widening of the skull with a flat back of head) This blog is here to create awareness of his condition and for us to keep a record of his progress.
7 comments:
Finley's head looks great! He's so adorable. Thanks for posting the follow-up pictures. I can't wait to hear what his final measurements are.
My son is 9-months-old and home measurements show he's around 91% in severity. Our doctor has been telling us since he was three-months-old that it will improve, but it hasn't. Good to see that it's not too late to do something about it.
How resent are these pictures and how old is he now? Did he keep on sleeping on his back when you stopped the helmet?
My son is 12 months now. We started repositioning him on his sides at 6 months (too late) and he has since then been pretty much completely off his back. He has had a Starband since he was 9 months but we have seen minimal improvement, he is a slow grower. CI% is down to 93 from 96 but when he takes a bath his head still has a cone shape and a very distinct edge to it. We will keep going with the helmet for another two months and hope for the best.
Petra
These pictures were taken in Oct - Finley will be 4 at the end of January so he was 3 and 3 quarters in these pics. I cant remember whether he continued to sleep on his back. Right now he sleeps in all sorts of positions! Good luck with the treatment.
Sarah
Just read through the blog posts, was a really good read about your patient journey. I don't know if you still keep up with the goings on in the world of plagiocephaly care, but I am sorry to say that the NHS response from many healthworkers and GPs hasn't changed much in the last few years!
Looking through the earlier pictures, and then at Finley more recently, you can really see the difference, especially considering the severity of the initial condition, and it really makes you wonder when attitudes will change.
Wow his head looks amazing and perfectly normal to me! I am really concerned about my 2 year olds head, he has Brachycephaly and looks similar to the early pictures of your beautiful little man. We have been seeing a paediatrician since he was six months and he will not do anything to help and told us not to get a helmet as they wont work, I feel terrible as lots of people say they do :( he still has a very odd shaped head and I keep hoping it will get better like the dr's say but it's not looking promising I hope one day he will have a lovely shaped head like your little one xx
My 3 year old sons looks very similar to Finleys! It doesn't look awful (no one would point and stare)
However! We are having so much trouble with sports helmets.
He has a hockey and bike helmet are a similar size that a 10 year old would wear. This makes me worried: when he's ab adult, will he be able to find helmets?! Will he have to miss out on activities?
What have you found/researched?
I'm beyond stressed
It's been 7 years since you updated. Finley should be around 11 years old now. I wonder whether Finley's head has continued to improve? I have a 3 year old with pretty severe uncorrected brachycephaly.. I can relate to the feelings of "failing him head-shape wise". I can only hope for the best for him..
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