Newbie just saying hi and intro. my SN miracle!!:)

[piglettsmummy]

I've posted a couple of times on here but I haven't really introduced myself ( might come in handy later on!!) I'm 20 and have a beautiful little girl who's 2! She was Born full term and perfect... Or so we thought, at home when she was two days old we noticed she paused after taking so many breathes, HV dismissed the idea and so did doctors but I knew something was wrong!! Her dad didnt believe me and not did his family. I persisted with doctors, but at three months her mattress sensor alarmed at night! Again doctors wouldnt listen but when it happened at 7months we finally it an outpatients appointment and after a sleep study I was in for a shock! Doctors looked very grave as they told me that it wasn't as tbh expected and she just kept forgetting to breathe. Then when her consultant came in hr told me that she was very lucky to be alive, her mattress sensor and my persistence were wat saved her life! Those words and that day will haunt me for the rest of my life!
Anyways we were transferrd to Sheffield children's hospital and 14months later and 3 failed treatments ( caffeine, oxygen and bipap vent) we are trialling a me vent that has only ever been used at Great ormand street! We feel very priveliged to use it but signs are showing she still isn't coping! Her condition is not yet diagnosed but what happens is her brain doesn't respond when her body needs oxygen/ has too much co2 she often doesn't breathe deep enough and has a very low natural breath per minute rate. In the day she doesn't have any breathing aid but uring her sleep she has to rely on an auto servo ventilator (new type of bipap) the forces air Ito her lungs via a nasal mask. She gets tired very easily and her behaviour has been affected because of
Her poor sleep quality. However she is the most amazing little girl you could ever meet!! She's is a miracle and a role model!! Me and her dad split in may. It was a mutual decision for our own separate reasons one of mine being the pressure of my daughters condition and he just couldnt see the seriousness or offer support!! For now I'm just hoping she gets diagnosed which is close! They think she's on the same spectrum as CCHS and then we'll go from there ! So that's us! Hi everyone :) xx

[Ineedalife]

Hi piglet and welcome to the board. I am going to pm you because I want to tell you something about what happened to my neice.

In the meantime, I have 3 Dd's and number 3 who is 9 has ASD.

[ohmeohmy]

You sound like a great mum, she is lucky to have you. Hope you can find some support here.

[Dev9aug]

Welcome Piglettsmummy.

[SallyBear]

Hi piglettsmimmy I have four DC. Three have SN. Two with ASD and one with a respiratory problem. We've already "spoken"!! Welcome to the board.

[mariamma]

Hiya, I think we've 'met' on a thread.

I'm mum to 3 dc, ds with asd and adhd and 2 other dc who are bundles of of mischief. I'm sure you know this, but if you haven't applied for DLA you should. Your dd should get higher rate care (24h potentially life threatening illness needing constant supervision) and also higher mobility even though she's under 3 (dangerous illness which might need immediate access to transport)

[mariamma]

obviously with you as her mummy the danger is minimal, but the form allows you to say so, and that's exactly why DLA exists to help with looking after her

[piglettsmummy]

Mariammani get middle rate care for my daughter that's it and I also claim carers. She is under 3 (dob: 24/08/2010) but wants aware I cud get mobility? X

[PedanticPanda]

Hi welcome I've got a 5 year old boy with ASD, step daughter with Rett syndrome and one on the way.

[mariamma]

Guide to DLA, officially for neuro issues but most of the advice will apply