craniosynostosis??
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There is a really helpful fb group where I have seen this mentioned... https://www.facebook.com/groups/169764948019732/?ref=share I'm on it as my little boy had torticollis and slight plagiocephaly and have found it useful!
My three year old was born with it. She had surgery at 3 months old. She wore her helmet until one year and after that you can’t even tell. The leading up to the surgery was the most difficult part for me and seeing her in recovery. She’s doing absolutely amazing and as wild as ever.
@Danielle he’s currently 4 months and we’ve just been to our children’s hospital after a GP referal they are doing a CT scan at end of month to diagnose as it isn’t clear. His head shape was clearly ‘abnormal when we was small but has massively improved so we’re very confused tbh. The neuro specialist has stated possible biocoronal craniosynostosis :/ it was the whole ‘there are only 4 hospitals in the country that specialist and can do corrective surgery’ that has sent my head into a spin 🙈 I haven’t dare allow myself to google too much around the procedures yet x
@Alicia I’d never even heard of it before this. It’s suspected bicoronal type and Google is very confusing. His CT scan is at the end of the month to give a diagnosis and they aren’t sure yet. X
@Chelsea yes, GOSH alder hey, Oxford and Birmingham do the surgeries. Do you live close to any of those? AH diagnosed my son just by looking and touching his head no ct scan needed they know what they are doing, so maybe worth asking go to refer you to your closest of the 4 to cut out aditional testing. I’d never heard of it either until my son was born it’s a minefield! The thing that gave me the most reassurance as head you automatically think brain, but the skull is bone, it’s bone surgery, took lots of the stresses and anxieties away. There’s a great group on Facebook called Cranio ribbons and Cranio ribbons parent support group, lots of parents in the same situation and lots years on down the journey xxx
My nearly 11 year old was born with craniosynostosis feel free to message me lovely xx