Published on 12, July, 2020
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
Did they give a reason for advising against melatonin gummies or why they wouldn't prescribe melatonin tablets? In the SEN school I work in lots of the children take melatonin for sleep problems. I think the tablets are called circadin. If they are not going to help, they could at least justify their reasons.
Their reasons were and I quote " melatonin is not available to purchase in the UK for a reason and is always best given under medical supervision"
Well I asked for it repeatedly from doctors and was told primary care can't prescribe it and since her referrals to the people that can keep being messed up I'm stuck
I wanted it done by doctors but I feel they left me no choice, and now I have to go and justify myself to our practice senior gp who is going to decide whether or not it's a safeguarding issue.
I’d not heard of melatonin gummies before so I’ve just done a bit of research. Apparently they used to be available in health food shops in this country until 1995 but then it was decided that as it works on the pineal gland it has a medicinal function and therefore requires a drugs license. It’s also not liscenced for use in children so will only be prescribed for children if the prescribing doctor is happy to take responsibility for any side effects. It is commonly used in children with ADHD and Autism, though given the restrictions on the product I can see why a doctor would want the child to be diagnosed before prescribing it. It is much more controlled in this country than for example the US where it is still sold as a health food supplement. There’s even a ban on it being shipped to the UK though sometimes things slip through the net. I found this article for information for you:
https://www.pharmaceutical-journal.com/learning/learning-article/melatonin-and-its-use-in-children/11116406.article?firstPass=false
After all that though, I would say that the failures of countless healthcare professionals to do anything to help your daughter over the years has left you in an impossible and quite desperate situation! It sounds quite daunting but Maybe you could see the meeting with the senior practice GP as an opportunity to finally get your daughter referred and assessed for autism? Before going, document in detail, as you have here, all the attempts you have made to get help for your daughter and all the failures of the healthcare professionals that have not done their job properly. Also make a list of your daughter’s current presenting symptoms and explain that maybe what you did was drastic but really it was caused by the failure of the system to adequately support your daughter, they left you no choice! Do emphasise that you are no longer giving her the melatonin gummies though as I feel that they are slightly less likely to raise a safeguarding concern for a historical issue that is not current. Don’t give up until you get that referral, these professionals have a duty to ensure she has the care she needs. Good luck!
I hope so to, although it was a massive relief to have a doctor listen I won't get my hopes up to much as we have been let down so many times, now I just need the school and school nurse to put as much on paper as they can to support it and maybe we might get somewhere I really hope so! Last night was awful for sleep think we an hour and a half!!