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
  • The local peadtrician should be able to prescribe melatonin as I had to call my 5 yr olds peadtrician every day as that is the only way they will listen to you if you leave they won’t get things rolling, my 5 year old was prescribed small dosage of 2mg then all the way to 7.5mg of melatonin’s tablets which worked and their is a liquid format too , I’m now getting other issues like anger with him and I’ve had the greatest support from my Gp based in the Midlands , just keep fighting and chasing your local peadtrician and cams for better proactive results as nhs do have tendency of not taking parents seriously 

Reply
  • The local peadtrician should be able to prescribe melatonin as I had to call my 5 yr olds peadtrician every day as that is the only way they will listen to you if you leave they won’t get things rolling, my 5 year old was prescribed small dosage of 2mg then all the way to 7.5mg of melatonin’s tablets which worked and their is a liquid format too , I’m now getting other issues like anger with him and I’ve had the greatest support from my Gp based in the Midlands , just keep fighting and chasing your local peadtrician and cams for better proactive results as nhs do have tendency of not taking parents seriously 

Children
  • I have been chasing them round and round since she was 4, the main problem seems to be that each department say she needs to be seen by another department so no one takes responsibility for actually treating her! 

    At least the gp I saw yesterday was very supportive and witnessed some of the behaviours I have expressed concern about she also took copies of my sleep logs and agreed it's not good enough she is pushing camhs to see her asap and recommending that they start treatment for the sleep problems so fingers crossed