Car seats buggies and screaming?, Help.... — Scope | Disability forum
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Car seats buggies and screaming?, Help....

aimeylady
aimeylady Community member Posts: 10 Listener
Struggled for a year now to get our daughter to tolerate a car seat or push chair. Emailed an American company called snuggin go to ask their advice, just need a shallow car seat and buggy, all of them are too deep for Evie and she just can't tolerate it, I'm just struggling big time with her screaming and crying, unless I'm with her or holding her she just screams and. Mean LOUD! As soon as she is held she stops but only by me or my husband and one or two of the carers. It's sooooo. Hard to know what's best to do. I've tried leaving her to scream but she went for an hour and a half, was ringing wet with sweat and starts coughing and spluttering! I know if she was healthy I would have been a controlled crying kinda mum, but with Evie I spent 10 months trying to stop her crying as she had so much pain from chemo for 6 months, reflux, NJ tubes out all the time, then a peg j fitted and that was hellish at first, then she's had to have laser therapy on her eyes every three weeks for the cancer, then chemo injected up her leg and has to have that again next week, it's sooo hard, it goes up her artery and straight into her eye! I mean.... How is anyone meant to know what's the right thing to do! We try and give her two full massages a day, hydro once a wk and physio sessions twice a week that we then carry out every day, I try all I can but it's just overwhelming! And to top it off, she can't even go in a buggy and enjoy the pleasures of the world, or eat food to get pleasure from.....it's soooo tough.... Just venting..sorry to go on xxx Evie is 16 months but tiny she weighs 8k

Comments

  • Sam_Toucan
    Sam_Toucan Community member Posts: 24 Connected
    Hi Aimey,

    Do you know why she dislikes the car seat? If there's a real problem then I don't think leaving her to cry will help - you'll need to figure out the problem and address it. It may require some trial and error unfortunately.

    I have a similar situation with my son - very distressing as it's hard to take him anywhere except in the sling and you start to feel stuck in the house. In his case, he gets painful muscle spasms as a result of his dystonia - this is triggered by being held in the one position for too long such as being in a car seat or the buggy.

    We are managing the problem a bit by rocking the car seat to calm him down, and he's on some muscle relaxants which have helped. But sometimes niether of these work and like you we have to take him out and hold him.

    Sam
  • mollymoobarnes
    mollymoobarnes Community member Posts: 107 Listener
    Hiya
    I really don't know what the solution is re: car seat and buggy but I thought i'd post anyway and just remind you that you are doing a GREAT job and to not beat yourself up over what you think you should or shouldn't be doing. Evie is having a hard hard time at the moment and you are doing everything in your power to help her. None of us have all the answers - we're all just feeling our way in the dark!

    Re: buggies - does Evie need postural support in a buggy?

    Take care hon

    Maria xxx
  • Haypops
    Haypops Community member Posts: 1 Listener
    Hi aimey, my daughter poppy was exactly the same...especially with the car seat! She would scream so much...she would sweat and her clothes would be dripping wet...i used to dread having to leave the house or go out because I knew the screaming would start. It all started to get better when we she got a forward facing car seat...and I got a DVD player to go on the back of the head rest with songs on. Like the tweenies song time! Lol...is Evie's car seat forward facing? Is her buggy forward facing? Poppy's got much better now but up until a few months ago I would have to have her facing me In her buggy. It sounds like little Evie has really been through it...and I know it's tough. But it sounds like your doing an amazing job! :) with all the Physio, hydro and massage. Poppy is 20 months and everything with poppy has been a struggle...shes so clingy to me especially and her dad,she hated everything at first...car seats, buggies, high chairs, toys, but with perseverance...she has really come along and got used to things and even started to enjoy being in the car seat and high chair. Poppy isn't far off Evie's weight either she's 8.4kilos...and getting her to gain weight has been and still is such an up hill battle. But we are getting there. It's hard to know what to do for the best sometimes...especially when they are doing loads of screaming! I don't know if its cos they are uncomfortable, really dont like something or if they are just being crafty! Lol I would defo try the DVD thing if you haven't already as that really helped...also nursery rhymes in the car...anything to distract :) xx
  • kingboy25
    kingboy25 Community member Posts: 57 Listener
    Many years ago I met a lady in her forties who had Athetosis which I think is the same as dystonia. She had a moulded seat for her wheelchair and told me that everytime she had a new mould made her body rejected it and she had to work very hard to get her body to accept it. I wonder if a moulded seat would work for your daughter. Yes it might take a little time for her to get used to it but it would fit her perfectly and could be made to fit her buggy and car seat and could be shallow enough for her to feel more comfortable.
    It is so hard when they are little as they don't understand.

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