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plagiocephaly in older children advice please? so worried.

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
''Amanda used to go out with an Agrophobic. Not very often though.'':p

Comments

  • Violetta_2
    Violetta_2 Posts: 3,588 Forumite
    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!!!
  • Savvy_Sue
    Savvy_Sue Posts: 46,920 Forumite
    Part of the Furniture 10,000 Posts Name Dropper
    MOVING THREADS FOR BETTER RESPONSES

    Hi, Martin’s asked me to post this in these circumstances: I’ve asked Board Guides to move threads if they’ll receive a better response elsewhere (please see this rule) so this post/thread has been moved to the Health board, where it should get more replies. If you have any questions about this policy please email [EMAIL="abuse@moneysavingexpert.com"]abuse@moneysavingexpert.com[/EMAIL].

    Having said that ...
    MEDICAL ADVICE

    Martin’s asked me to post this: Sorry, giving or asking for medical advice is not permitted on this forum as it’s not what this site is about. While discussing medical insurance policies, cheaper ways to see consultants, cashback for alternative health treatments and how to get specific medication cheaper (legally) are all perfectly acceptable we ask you specifically not to discuss what to do in the event of certain medical problems (please see this rule on the Health Board). If you have any questions about this policy please email [EMAIL="abuse@moneysavingexpert.com"]abuse@moneysavingexpert.com[/EMAIL].

    I hope the link Violetta has provided is useful.
    Signature removed for peace of mind
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