Kidnaps 2mg melatonin - help please!!!...

[Becaroooo]

Got a private prescription for this from ds1's aped last night.

Had 2 quotes from local pharmacies....1 was £260 for 200mls and 1 was £160 for 200mls!!

We sinply cannot afford this along with all his other supplements/therapies etc.

The paed did mention that you can buy it online but am unsure about this...has anyone here done that and if so could you direct me to the site??

Thanks!

I am absolutely staggered we had melatonin for my son over 14 years ago all on prescription and we live in Norfolk.

CAHMS is the Child And Adolescent Mental Health Service, they are a collection of various health professionals who diagnose and treat any mental health issue including depression, dyslexia, ocd, asd and may more, sound like they may be an alternative approach for your ds. i think we have found getting services for dd easier because she is at the more severe end of the spectrum and her problems are very obvious where as if your child is in mainstream and more able your always going to get "well he/she looks alright to me" attitude, so a diagnosis and statement are all the more important.

Ah, yes, I thought it was to do with mental health.

I suppose over the years we have developed coping strategies...

Not really helped by my MIL chipping in every time I raised concerns with "he is just like dh!!" Erm...no he isnt. He cant read and write, he cant sleep without one of us with him at 8.5y and he tip toe walks and hand jerks. sigh.

We got double beds in all bedrooms so we could all get a good nights sleep, for example. Trying to bf ds2 in bed with ds1 squirming next to me wasnt easy!!!

We let him watch his dvds - which he is pretty obsessive about - more than we should. He tends to watch one over and over for weeks and then switch to another...eg; before xmas it was Victorian Farm, now its Prehistoric Park....next month it will be something else....

He has well over 100 dvds and probably twice as many books (if I had loads of books he would just learn to read, right???) He has a nintendo dsi (gift from my mum) and does use it occasionally (useful for hospital/docs appts and the waiting) We also have a wii (gift from my mum again) which he also uses occasionally and he got a ps3 for xmas so he could do the driving games - which he is infuriatingly good at!!! Drives dh mad dh comes in 11th and ds1 comes in 2nd but we dont use any of them much tbh.

His dvds are his big thing....dinosaurs, trains, top gear, animals etc.....and we do indulge him as a) its educational and b) he enjoys it and it keeps him happy.

Recently made changes to his diet (which was v limited and v carb heavy) and he is no longer constipated and no longer has bad tummy pains Also on magnesium and zinc supplements too.

Ds1 is a "good boy" IYKWIM? i.e. no issues at school, no violence, no bad reports etc and IMO that has not helped him...a child with behavioural problems too would have had intervention (and rightly so) long before now.

He is one of the ones that sits at the back and slowly gets further and further behind.

Well. Not any longer.

oh, didnt answer your question, did I?

How do we handle his anxiety?

I guess by trying to avoid what we know stresses him...this has caused bad feeling with my dh's extended family as we dont do the big xmas meet up (30 people plus he doesnt know in a tiny house ) Oh, and the family in question have a dd with sn so you would have thought might show come sympathy/understanding???? No.

Dh and I dont go out at night (well, once in a blue moon) and we try and make sure there are no surprises as he doesnt like them....i.e. changes of plans.

We have been on hols to the same place for the last 4 years but I have rebelled this year and we are trying somewhere else....UK but just cant face the same place again (lovely though it is)

God, my life sounds sad when written down!

It's diabolical that you have to fight so hard, my only suggestion is don't believe anyone when they say that help isn't available, just demand to see someone else, you're well within your rights to go and see anyone you want, hope you find some help soon. Good luck

Thank you rosie

If my time on the MN SN boards has taught me anything its that my fight is nothing compared to what others go/are going though

Becaroo - if u want to PM me your mobile no. I will send u a photo of the melatonin I have bee using totally safely for years. That way you can identify the right one online.

sick will do

leonie Its is mad, isnt it?

becaroo that sounds just like my ds! He's on meds for anxiety now which has helped massively, but we do the same as you - we avoid doing things that stress him out, we rarely go out together, go on holiday to the same place, avoid family gatherings etc. How old is your ds? Is he still in primary school?

He is 8.5 - 9 in June.

He is in Y4 at a small local village primary - we moved schools and houses to get him to a school where he wasnt verbally and physically bullied every day I actually home schooled him for most of 2010 it got so bad.

He has major self esteem issues stemming from his dyslexia and the fact that he was told daily by classmates that he was on the "thick table" and that he was "slow"....he was also being physically bullied by the same boy - since nursery - and it just gets to the point where you have to do something. Oh, and this was an "outstanding" school according to OFSTED

His current school isnt perfect - few are - but he is happy and thats the main thing. I realised long ago I would have to teach him to read and sort out his issues and that has proved to be the case....I wish there was some way of getting all the tax back that dh and I have paid over the years for useless/ negligent health and education services

sick my blackberry wont let me retrieve the info...could you PM me the name please?

thanks
x

poor ds that sounds tough are you applying for SA?

Nope. He wont get it and the school wont support the application either and I quote; "he isnt bad enough"

Meh.

Ds1 is currently doing exercises to stimulate his cerebellum and will also start vision therapy in 4 weeks or so....school cant do that for him but I can

Oh!.......

Ds1's lovely paed just rang...he is horrified at the prices I am being quoted for the melatonin....and so is prescribing tablets instead - which cost £14!!!!!!

Thanks so much all for your advice/help x

excellent news on the new 'script becaroooo

Please don't be fobbed off with 'he isn't bad enough for SA if you think he needs support in school you can apply yourself, you certainly don't need the schools support to do this, perhaps your paed can support your application.

becaroo - it doesn't matter if the school don't support the application. It's not their decision as to whether he is 'bad enough' or not - they're not qualified to decide. If he is suffering with anxiety he will need that SA when he transfers to secondary.

good news about the price!

Honestly? I have pretty much written off ds1's time at this school....he only has til next July to go then transfer to middle/high school. Thats when I start again. I realise that sounds defeatist but I know that getting SA for dyslexia is pretty damn impossible unless the child is in the 1st centile or below for both reading and writing - and ds1 isnt. He also behaves quite differently at school than at home - its at home that his "quirks" manifest themselves.

An EP report done last sept was crap not helpful in that regard! Basically said the school was doing all it could...real "cut and paste" job IMO.

The private paed would dx asd/adhd BUT at this point I am not sure how helpful that will be - with this school I mean....they already have me down as a neurotic mother who thinks her child is cleverer than is he His Y3 teacher actually told me that I may have to accept that the lowest sets is where he belongs...so she has basically written him off at the age of 8 I did not deign to reply! ALL of ds1's teachers/EP/paeds have said that ds1's performance in no way matches his ability....I dont know how I didnt punch her in the windpipe, frankly!

Ds1 is happy there and - for us, right now - thats enough.

I know I have battles to come with the new school - and I guess thats where the paed comes in as I feel atm that a dx prior to going to his new school will be more beneficial IYSWIM?

Sorry, not explaining myself very well!

Will think on it leonie I will have a chat to dh too.

The EP report said the school are doing all they can (which with respect to his dyslexia they probably are in that they cant help him) and so I just feel I have nowhere to go on that score....

I know I'm not nuts I do wonder sometimes!....but generally I know I'm not. They only things that have helped ds1 are the therapies I have researched and paid for (AIT, RRT etc) I am really hopeful the vision therapy will be as successful

In MS primary school IME there is simply nothing done for dyslexic children other than time with a TA 1-1 (not offered to my ds1 however!) and programmes like Read Write Inc. Not helpful and IMO actually damaging as the child misses out on the NC work his/her peers are doing and so falls even further behind.

I pushed for the dx of dyslexia as I was thinking ahead to secondary school and the fact he may need extra time/help for his work/exams which he will get now with a dx....he may even get a scribe if neccessary.

Thanks for the advice x