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Growth Attenuation therapy for severely disabled child

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carolinehn232323
carolinehn232323 Community member Posts: 3 Listener
edited November 2018 in Children, parents, and families
Hi,
I have a child with a progressive neuroloigcal condition . I have read a bit about GAT, which is growth attenuation therapy. This is when the child is given drugs to prevent them growing to full size. My child will benefit from this as it ks so much easier to take her places when she's lighter and more easier to clean and manage . I have not yet asked the doctor but have requested some more information. Any body out there who has done this with their child? Please share your experiences? Is it worth it? Any side effects?
Thanks in advance
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  • Sam_Alumni
    Sam_Alumni Scope alumni Posts: 7,671 Disability Gamechanger
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    Growth Attenuation Therapy (also known as Ashley Treatment) is very controversial and I am not sure what the availability of this is on the NHS.
    From what I have read, it is a huge decision to make and one that should be discussed with medical professionals.
    Some disabled people are extremely against this sort of therapy.

    Scope
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  • newborn
    newborn Community member Posts: 832 Pioneering
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    You have nothing to lose by making an appointment.  There will be the waiting list for a specialist to follow, unless you can see one privately.

    You won't be able to help her have much of a life, if she is too heavy to take out. You both  won't have much pleasure in life, if simply getting her washed and changed is next to impossible,  or results in permanent damage to your own health.

    You have looked into it, so you know the effects are not instant.  The sooner GAT starts, is possibly a saving of a lot of avoidable  heavyweight growth before it begins to slow.   Why not research all you can, while waiting for a gp appointment?  I'm afraid you might need to be certain, well informed, and determined.  Some people who don't  comprehend the difficulties of looking after a full sized human still think they have the right to impose their opinions on others. 

     You need to be prepared, just in case your gp is one of the ignorant but sentimental about a 5 stone child and the parent having no choice in the matter, but helplessly waiting as the child grows relentlessly to 15 stone.

    People may say silly things, imagining there might be a 'side effect' of 'impairing' the child's ability to marry and give birth, which in their fantasy is the happy ever after prospect for every female child, which they think the parents are ruining, for no reason.   Uninformed, emotional,  opinionated critics won't know what you know, about the prospects for that, for her, regardless of how big and heavy she becomes.

     You, for certain, want the best for your child, and you are aware of the future.  It isn't someone being kept small, who would otherwise go on to live a full ordinary life at the full ordinary size.

    I've know two similar situations, one where the child's disability itself kept her small, and her life short.  The other may live long.   She is in her 20s, but looks like a young child, which helps not only with lifting and taking her out, but also  with allowing her herself to get a little exercise, being so light she can still move about slightly within the house. 

     Her juvenile appearance also helps with the public treating her better, because she has the understanding of a 3 year old.
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  • carolinehn232323
    carolinehn232323 Community member Posts: 3 Listener
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    Thanks for both of those comments.

    I really appreciate that for some people it might seem a terrible thing to give your child as it's new and hormone treatment isn't widely available yet. But I look at it for the long term and from her point of view. I want to maximise her outdoor experiences and day trips. Realistically, as she gets to adult size, I will only be able to do so much with a second adult helping me. Just thinking about it logically, that means everytime she goes somewhere, she needs two people as lifting her to change her etc would require that. So obviously, that will already already reduce the number of outings and experiences for her. This is a child with no head control or voluntary movements.

    I also think about the future in terms of where she will live as an adult and my own age, limitations and freedoms - these are things that parents of healthy children consider, so naturally as a parent of a severely disabled child, I think about them too. Can she continue to live here with her Mum and Dad, whilst we reach our late 50s/60s? Well if she's 40kg rather than 70kg, that might be more possible. This will give her a better family life and she will be included more in family activities - even just moving her into the kitchen for meal times will be easier and therefore more likely to happen

    On a different note, we use hormone therapy for birth control, cancer therapy and now to delay pubery for transgender females. This is just another use that will have huge benefits to the individual and make life more 'livable'

    I think the benefits to her social and physical health outweigh the negatives. Anyway, rather than debate it, I would really like to hear from parents that have looked into this. Please let me know what response you've had and how the child has coped with the therapy.

    Thanks in advance






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