WWYD if no one believed you?

[piglettsmummy]

I had a massive row tonight with a woman I don't get on with on an Internet support group. I don't wana go into detail but it ended up with her sayin I make most of my daughters problems up! I feel heartbroken and so low and humiliated! My daughter is on a ventilator at night time and has started asking for it in the day. She is two but you would assume she wud know when she needs it I mean what kid is gunna allow a mask to be strapped to there face, have cold air flushed into there kings just for the sake of wanting to be lazy? Not a 2 year old. She gets tired so very easily and I don't no why, he has started refusing food and just picking at it but will quite happily take purée food. Would u believe me info said all of this? Some people don't and they think I'm
Making my daughters life into something it shudnt be! If she asks for her vent I no she needs it the rest I have no explanation for but we are looking into it along with doctors.
Doctors always used to tell me nothing was wrong with my child and it was now I feel like that's happening all over again but with other people! I have left a support group because of this and now cannot get advice (other than docs) about her vent. I now need to trust my intuition but I feel beaten down :(

this isn't nice at all, I have no wisdom or advice I'm afraid but I can offer a friendly ear and tell you not everyone will disbelieve you, some people are just plain odd.

Best wishes to you and your dd

i think you need to get to the bottom of what is your DDs problem once and for all.

i would start banging some doors down if i were you to find out what the issue is.
if you get no joy keep going - there must be a reason for your daughters problems and you need to find it. what are your gp/doctors/specialists doing to diagnose her?

We are under the hospital and she has regular appointments we do have tests and we are getting to the bottom of it. I feel so hurt that people cud believe I'd lie x

So she thinks that your two year old is asking for her ventilator so she can have a nice rest.

Huh??????

Has she met any two year olds????

They don't really like to rest.

I'd think she was an idiot and ignore her.

Mummytokatie she also has a child that is vented during sleep so she must think it makes her the worlds cleverest person in the matter!! When I asked this support group how I can better my set up ( where vent/ monitors are)she suggested i put the vent in my daughters cot!! saying her daughter has always had hers on her bed! After telling her that my daughter was very curious and would probably turn it off, she replied "what harm wud it do if she did?" erm well If she switched it off and fell asleep she cud DIE!!! It be extremely I'll at minimum!! My daughter is suspected to have the same condition as her daughter but doesn't seem to realise the same do' and dont's apply to my lil girl?! X