Fed up (understatement!)

Hi all 

Not sure why I'm posting, just feel so low and tired today.

We noticed at 2.5 that our daughter was showing signs of autism as well as sleep problems hv advised us to wait awhile before pursuing anything as daughter had complications after birth that we were warned could cause delays in development.

At 3.5 took her to gp about sleep and repetitive behaviour and diet, he laughed at me but referred her to paediatrician who agreed she was showing signs he asked gp to refer her to camhs so I waited gp it turns out never referred her.

At 6, school nurse got involved and got camhs to come out and see her they agree she needs assessment great! No they mess up referral and daughter is rejected due to the wording on her referral letter! School nurse stands by us sets up ehp gets us a support worker (didn't want) all to document everything to support re-referral.

Daughter is now 8 and still not sleeping she was making herself Ill (as well as me) tried gp again told they can't help. So I brought her melatonin gummies and it worked for the first time in years she was sleeping and happier in herself but school nurse found out demanded I stop and take daughter back to gp as it's best from doctor, so I do this and guess what they won't help and don't want her having them so we are all back to no sleep constant meltdowns. It just seems ludicrous that I am the bad one for doing something that actually helped my daughter and they do nothing! Apparently sleep deprivation is better for her! 

Sorry pointless rant I know just feel so lost 

Parents
  • Your rant isn’t pointless. The tooing and frowing between loads of professionals who don’t actually appear to have achieved anything between them is pointless and unnecessary and actually quite cruel when all you are trying to do is get your child diagnosed so you can get the best possible support for her. Does she have a diagnosis yet? I do feel your frustration. I’m in the process of trying to get a diagnosis for my 23 month old, I did think she was autistic but to be honest I’m thinking more along the lines of some rare genetic disorder now. She was supposed to have her review with the paediatrician back in August but hasn’t had it yet. Luckily she now has a date for review at the end of this month but only after me chasing them incessantly. Also when the paediatrician initially saw her back in April he said he would refer her to audiology, as she’s not speaking yet or responding to her name, his letter states ‘i will refer her to audiology’. He never did though. I actually managed to get a telephone call from said paediatrician in December after I’d given a list of her symptoms to the secretary and demanded a review ASAP. He said we needed to make an appointment with the GP to refer her to audiology! (Even the GP queried this) but I did as instructed and got her referred to audiology who saw her last week, she has moderate hearing loss and needs hearing aids which should help with her speech and understanding BUT this could and should have been sorted months ago, 10 months is a long time at her age! So I know you need to chase and fight and generally kick up a stink in order to get anything done. Luckily my Aspergian tendency to perseveration comes in handy sometimes! 

    let me know how you get on

Reply
  • Your rant isn’t pointless. The tooing and frowing between loads of professionals who don’t actually appear to have achieved anything between them is pointless and unnecessary and actually quite cruel when all you are trying to do is get your child diagnosed so you can get the best possible support for her. Does she have a diagnosis yet? I do feel your frustration. I’m in the process of trying to get a diagnosis for my 23 month old, I did think she was autistic but to be honest I’m thinking more along the lines of some rare genetic disorder now. She was supposed to have her review with the paediatrician back in August but hasn’t had it yet. Luckily she now has a date for review at the end of this month but only after me chasing them incessantly. Also when the paediatrician initially saw her back in April he said he would refer her to audiology, as she’s not speaking yet or responding to her name, his letter states ‘i will refer her to audiology’. He never did though. I actually managed to get a telephone call from said paediatrician in December after I’d given a list of her symptoms to the secretary and demanded a review ASAP. He said we needed to make an appointment with the GP to refer her to audiology! (Even the GP queried this) but I did as instructed and got her referred to audiology who saw her last week, she has moderate hearing loss and needs hearing aids which should help with her speech and understanding BUT this could and should have been sorted months ago, 10 months is a long time at her age! So I know you need to chase and fight and generally kick up a stink in order to get anything done. Luckily my Aspergian tendency to perseveration comes in handy sometimes! 

    let me know how you get on

Children