Viewing 9 posts - 1 through 9 (of 9 total)
  • #194662
    Vaccine for 12 to 15 year olds

    Hello, my Son is 12 years old and has a congenital myopathy which requires him to have overnight non invasive ventilation via bi pap, which he has had from the age of 5 months. He has been a power chair user all of his life. He has now been shielding since Feb 2020. Today I had a phone call from our local hospital consultant to discuss him having the covid vaccine off license so that he could return to his mainstream secondary school.
    The Consultant who has never met Ethan, as he has recently taken over this post said he may not meet the criteria, as he does not go to a specialist school and does not receive a care package, even though we are visitors to Children’s Hospice South West and have been since he was a baby. How is this right? how can a child with muscle disease and requiring bi pap not be deemed to meet the criteria?!
    Any advice would be most welcome.
    Many thanks.
    Frustrated parent

    jasmine1
    Participant
    Posts: 16
    Joined: 27/05/2011
    #194663
    Reply To: Vaccine for 12 to 15 year olds

    We had similar issues with our daughter 15 [different heath issue] but won by being persistent.
    I must urge you to get a care package, however small.You can have Direct Payments [here anyway] I have found Labour councils much more likely to provide care than conservative councils.

    David

    Diggers14 Diggers14
    Participant
    Posts: 2
    Joined: 16/11/2014
    #194664
    Reply To: Vaccine for 12 to 15 year olds

    Many thanks we are at the end of our tether with it. We are in the process of applying for enabling hours weekly for Ethan, so hopefully that will help our case.

    jasmine1
    Participant
    Posts: 16
    Joined: 27/05/2011
    #194666
    Reply To: Vaccine for 12 to 15 year olds

    Maybe calling MDUK helpline could help advocate.

    It really upsets me that clinically vulnerable ventilated kids who would normally get the flu vaccine are not being protected with covid vaccine.

    Please let us know how you get on. The fact that they are giving it off licence I really dont see how they can dictate conditions like receiving paid care and type of etc.

    """""""What doesn't kill you makes you stronger""""""

    Cat Cat
    Moderator
    Posts: 1,002
    Joined: 20/09/2010
    #194667
    Reply To: Vaccine for 12 to 15 year olds

    We were informed that our daughter would get the vaccine if she was in a care home, not though as she lived at home! Which at least gave us another weapon to fight with.She had her second jab 10 days ago.

    David

    Diggers14 Diggers14
    Participant
    Posts: 2
    Joined: 16/11/2014
    #194668
    Reply To: Vaccine for 12 to 15 year olds

    Thank you that is definitely worth trying. Will let you know how we get on. All Ethan wants to do is go back to school and be with his friends again.

    jasmine1
    Participant
    Posts: 16
    Joined: 27/05/2011
    #194669
    Reply To: Vaccine for 12 to 15 year olds

    Jasmine, I wold not like to call this one for you but may I offer some thoughts. If the consultant is prepared to offer the vaccine “off licence” are they or the hospital prepared to cover the insurance, in writing, should something go wrong? Clearly the need to licence the product is to ensure that those it is used upon can be assured that it will be safe for them. I have just read in the news today that yet another different type of vaccine is being introduced. Thus again, you will need to ask, should you get to that stage, what type of vaccine they will be offering to Ethan. There may be one that wold be more appropriate than others. As for whether or not your son should have been considered because he was not on a package of some form it strikes me as being a paper excuse from the authorities. I would fully support what Diggers has said and keep banging on doors to make sure that you get all that you need to support him. It will be the only way that you will get help.
    Finally, whilst I am far from being a child, I too am on bipap, as my right lung has ceased to function the left lung has around 30% capacity left, along with generalised muscle weakness from FHSD and diabetes. I was never invited to joining the at risk group for vaccine. I really am as confused as you as to why your son did not get this help earlier on.

    Mike

    So many love songs, so little love.

    embayweather embayweather
    Moderator
    Posts: 8
    Joined: 02/11/2015
    #194671
    Reply To: Vaccine for 12 to 15 year olds

    Thank you Mike, I was advised that the Pfizer vaccine is the one which would be used if Ethan is accepted. It really means so much that people who actually understand that Muscle wasting conditions which are so devastating, take time to offer advice. I will certainly ask this question. Once again many thanks.

    jasmine1
    Participant
    Posts: 16
    Joined: 27/05/2011
    #194688
    Reply To: Vaccine for 12 to 15 year olds

    The off licence term is more to do with that they don’t normally test any drugs on children due to low enrolment cases to compare. Its not that its not safe its that they haven’t had 30000 kids exactly same as any one child to form data on. USA have studied and began the rollout on under 15s

    """""""What doesn't kill you makes you stronger""""""

    Cat Cat
    Moderator
    Posts: 1,002
    Joined: 20/09/2010
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