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plagiocephaly in older children advice please? so worried.

mindy-bargain-hunter
Posts: 15 Forumite
wont go in to it all but basics, my son dylan is 4 1/2 had plagiocephaly (flat head syndrome) as he was squashed in womb and got worse, health visitors lost notes till he was 2 so we thought it was not a prob, now he is 4 1/2 had development delay, possible asd/adhd/aspergers, under going tests ect, chromosome texts all ok, fragile x ok too, but they picked up on his head.
had appointent with nurosurgeon on nov just gone, told all is on, just purely cosmetic but he will discuss with another top nuro to see if treatment needs to be dont, if so we will be called back, but they prob wont,,,, well, we have been recalled to go to the women and childr's hosp to see anothe nuro surgeon in 2 weeks.
i am so scared, he is too old to be fitted with a helmet, and his head and ears are out of line ect, i am so scared he will need the 14 hr operation, which has a very high fatality rate.
i cant find any info anywhere of this condition in older kids apart from a few in remote villages of poor people in another part of the world. even the dr looked clueless and he is one of the top nuro's in england.
please advise me, i am so worried.
thanks
amanda x x x
had appointent with nurosurgeon on nov just gone, told all is on, just purely cosmetic but he will discuss with another top nuro to see if treatment needs to be dont, if so we will be called back, but they prob wont,,,, well, we have been recalled to go to the women and childr's hosp to see anothe nuro surgeon in 2 weeks.
i am so scared, he is too old to be fitted with a helmet, and his head and ears are out of line ect, i am so scared he will need the 14 hr operation, which has a very high fatality rate.
i cant find any info anywhere of this condition in older kids apart from a few in remote villages of poor people in another part of the world. even the dr looked clueless and he is one of the top nuro's in england.
please advise me, i am so worried.
thanks
amanda x x x
''Amanda used to go out with an Agrophobic. Not very often though.'':p
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Comments
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Not something I know much about but must be a real worry for you have you seen the Plagiocephaly Care Uk websitelink is to their page of other links. Hopefully someone can offer you more support there.Booo!!!0
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I hope the link Violetta has provided is useful.Signature removed for peace of mind0
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