when  i had my middle child PHOENYX, he was completely normal at birth as was all of his anti-natal scans bar his 20week scan showing one of the left chambers of his heart had grown into a shepards hook shape {this wasnt put into his antinatal notes as they hoped it would grow out normally, at his 6week check he got rushed straight into hospital with suspected heart problems when the doctor listened to his heart, he also had very regular absent fits, he had a heart scan which came back clear the chamber had grown into the normal shape, {the however at 10 weeks old,was he also had scans as medics thought he had cerebal palsy or a similar diagnoise due to him not being able to support his head at all and his back soft spot had fused by 6 weeks old.his head was at birth on the 25th centile but by 6 weeks it was on the 96th centile. this scan showed nothing a completely normal head and skull. he also had an eeg to rule out epliepsyso we were seeing the peads very regularly he also got tested for rickets and many other conditions. he still at 10months couldnt support his head at all, his head just flopped there. after the peads had ran all the tests they could we got referred over the the cranial facial team @ the john radcliffe hospital, we continued to fight until phoenyx was 20 months old and got referred over the the neuro-surgeons who said straight away about performing an Intercranial pressure monitoring test and operation where a probe is put into the centre of the brain to monitor pressures then hooked to a computor less than 6 foot away however he had to stay in bed and couldnt be unhooked, this showed raised pressure within 2 weeks we had a further ct scan which clearly should cranialsynostosis and mild hydracephaly, due to phoenyxs unusual presentation, they couldnt find anyone else on record or any other teams at the conferences that had dealt with a patient presenting the condition in this way, they decided they needed to operate,a life threatening operation {we were told if they nipped an archery that runs under the skull then he'd be gone in seconds there would be nothing that they could do}so  going down to theatre @ 7:30am and not returning to the ward until 4:45pm, the most tense hours of our lives.he was operated on at 22.5months.

phoenyx has now had 4 i.c.p monitorings and 2 further ct scans as he still constantly complains of head aches, and shows all the signs he did before his diagnosis however his icps have been clear. so we are currently being reffered to the neurology department.

he has been diagnosed with macrcephaly {big head syndrome}, saggital synostosis, mild hydracephly {non problematic}, dyslexia, and currently being assessed for an asd / adhd.

 

phoenyx is now 7,headlines are the cranial facial support network who are always on the end of the phone or email or facebook with a friendly supporting ear, on face book it helps other families contact and support each other. they really do do a massively helpful job and i want to show them my appreciation for the help and support they have given us over the past few years.

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