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
Sounds like your really going through it at the moment.
I went through this when my daughter was 8 and I thought a lot of it was hormonal as well as the autism.
Haven't used those gummies but the reviews seem positive
I was saying on another thread that I've started giving her just a shop brought multivitamin and a Nordic dha liquid gummy capsule and that seems to have really helped her.
I think we all need to start getting a bit political and standing up for ourselves.
If the help isn't there ..then who wouldn't take it on themselves .to do the best they can?
Thanks for the reply, as I said just feeling really let down today,
I have tried omega oils before and she won't swallow them . We do have her on multi vitamins as her diet is not good. So far the gummies were all that worked. Oh well at least I had a few days sleep!
Thanks again for the reply it's just good to get it off my chest x
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
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.
Don't forget that the Samaritans are there for you.
Look after yoursel as well.
Thanks for the reply, no she is not diagnosed yet, I'm really sorry to hear that you are having problems to, it's just not right, it is cruel making her wait not understanding why she is different.
We do talk to her about it but are reluctant to disclose what we think to her in case we are wrong ( really don't think we are) so we just call it her quirkiness but even she is starting to notice that she acts different from other children, she keeps asking me if she's weird and it breaks my heart
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:
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!
First of all, that wasn’t a rant, you were simply expressing yourself. And the second thing is why are you doing what the doctors say? You know your daughter better than they do. If the gummy bears work, keep on using them, I would say.
Yeah I found that out after all this kicked off, I knew they were produced in the states but were being sold online by a UK company so thought it was OK.
I have got a large file prepared for them containing all the letters from paediatrics stating she needs assessment aswell as one from her paediatrician from early childhood stating that it was likely she need further assessment as she got older (she was 6 months old then) as well as all the rejection letters for reasons beyond us. I have also included 6 months of sleep journals 2 months of behaviour logs her cast questionnaire and information from school! May have gone a bit overboard but at least I'm prepared.
Thanks again for all the support I was just having a low day, stupid thing is I have literally just come from an appointment with pain management and got lectured about the importance of sleep they even offered me tranquillisers! I did explain that it was my daughter keeping me awake, it's just beggars belief that they will not help.