MrsD

The Paediatric Consultant just phoned me to say she has spoken to 'their' pharmacist (presume at the Children's Development Centre where she is located) and the pharmacist said yes, it is ok to crush the prolonged release tablets. Thanks to you all for your replies.

Thank you so much for your replies. You've put my mind at rest, I'll be able to sleep tonight .

Hi, I wonder if anyone can help advise me? Four months ago my 4 year son with ASD was prescribed Melatonin by his Consultant Paed at the Child Development Centre for hyperactivity at bed time. The Paed told me it was a tablet, I told her DS would not take a tablet (4 years old!), she told me to crush it and put it in food/drink. It worked fantastically well and we are still using it. However, the Paed wrote to the GP and asked them to now prescribe Melatonin 2mg. The Melatonin tablets we were given were slow release and said "swallow whole". I didn't think about checking this at the time because the Paed told me to crush them. When I collected the prescription yesterday, the GP gave us Melatonin strawberry flavour Oral Liquid which contains E420, E218, E216 and E1520 (they had no directions from the Paed as to what Melatonin to prescribe). I phoned the GP and asked for the tablets which we are used to. When I collected the tablets today from the chemist, the pharmacist said the tablets should NOT be crushed. I told her the Paed consultant told me to crush them and she was very surprised. She said if I do start using the oral liquid now, it will act in a different way to the crushed tablets I've been giving him because they were slow release. Just feeling in limbo, not knowing whether to try DS with the oral liquid (although his drink will obviously taste different so forsee this will be a problem). Also, should I be concerned about the E numbers? Am I doing him any harm by crushing the tablets which are slow release? Any advice appreciated to put me out of misery as this will be on my mind all weekend! Thanks again.

Thank you all for your replies. Puffin - Yes, that's what I am thinking... when we get a new psychologist, she may have a different opinion and a diagnosis may be hard to get. 6 months ago I didn't anticipate my daughter needing help at school BUT for some reason her difficulties are becoming more evident. I know she will do academically well but it is her social side that I think will be a problem. I am going to phone the psychologist on Monday and take up the offer of a diagnosis.

My daughter has been under the care of the clinical psychologist at the local children's development centre for the past 18 months. The psychologist is leaving and has been told to 'wrap up her cases'. She offered me a diagnosis for my daughter of "high functioning autism". I accepted the diagnosis but then thought about it for a few days, phoned the psychologist and said I didn't want her diagnosed yet and that I wanted to see how she got on at school - which was the original plan suggested to me. I don't know if I've done right. I DO anticipate problems at school but do I need a diagnosis to get help for my daughter? My daughter only has a mild spectrum disorder and there are family and friends that refuse she has any problems. Any thoughts appreciated.

Communication and Interaction Resource Base Here's a link (hope I'm allowed to post it) with more information on a CAIRB http://www.the-castle-primary.devon.sch.uk/pages/CAIRB.htm

Thanks to everyone that replied. As a result of the info given to me I have now: Requested a Statutory Assessment for my son - I am currently writing the Parental Evidence! On 12th November I will know if the assessment will go ahead. I have obtained a copy of the SEN Toolkit and Code of Practice. I have spoken to an outreach worker at a primary school (10 miles away) who runs a CAIRB for autistic children which is attached to a mainstream school. Apparently, to be a candidate for a placement, my son would have to have a statement and complex needs. ????DOES ANYONE HAVE EXPERIENCE OF A CAIRB???? Our designated mainstream school is a definite no no, we visited the other day. My son's behaviour was terrible while looking around, it's a very large, busy primary school and was too much for him. (This is going in my parental evidence with the telephone number of the SENCO who showed us around!) My head is spinning with visiting schools, talking to Parent Partnership, NAS, Special Education Team and the Outreach Worker. I'm learning as I go along. Yes, SALT has been involved for some time with my son (and my daughter who has had speech delay/clarity issues). Some days I wonder about my son's diagnosis of 'moderate ASD' and think he will be fine in a mainstream school. On a bad day, I know he will not Many thanks again.

Thank you. I'll look at the link. It was the Portage Advisory Teacher at my son's review that told me a special school wouldn't look at him. Dee x

Hi all, My son is due to start primary school next year. I have to submit my preference in November/December. I'm just about to start looking at schools. My son has been diagnosed with moderate ASD. We don't know yet whether he will need a statement, we are being referred to the Ed Psych. Currently there is funding in place at his pre school for one to one help, so I expect a statement may be likely although he has progressed amazingly well over the past few months. I have been told that a special school is not an option as they will 'not look at him' because his ASD is not severe enough. He is a bright little boy and a few months ago he started talking. He has a twin sister (non ASD), so ideally it would be beneficial for them both to attend the same school. It's all a bit daunting, I know nothing about schools as these are my first and only children. Do you have any advice as to what I should be asking or looking at when I visit these schools? Many thanks.

Sally, My son is involved with Portage and has also just started nursery. That's a worry too. I have given them strict verbal instructions and written consent that if he's taken out for a walk they must use reins! The Psychologist recently advised me to lock all windows in case he tries to escape. It's such a worry isn't it? I'm finding myself checking and checking windows before he goes upstairs to bed! Thanks all. Dee

Thanks for the ideas. I've never heard of Autism Outreach Department, who do they come under? We're not involved with social services (currently). My son was 3 in June and he was diagnosed with ASD a week before his 3rd birthday. I do use reins when he's out, but half of the time he's swinging around on them or on the floor - if he can't go where he wants to go. Yes, mainly it's a worry around the house/garden. Also, the road is so busy, taking him for a local walk is a no no. He has a twin sister and I've been a single mum for the past 4 months so I don't have time to do any active petitioning, unfortunately. Thanks.

Thanks Bid for taking the time to reply. The 'housing association' consists of a few panel members from the local parish council, it's an Almshouse that I live in and there are only 2 properties available (one of them being my accommodation). There are no other properties - it seems a strange set up I know. I had a police officer visit me this afternoon re my formal complaint for speeding. She did think we should ask for gates to be fitted.

Just over 2 years ago we were lucky to get offered accommodation in the form of charitable housing. At the time I didn't know my son had ASD and I had no idea how dangerous the road was. There's a 30mph speed limit but it's a straight road and cars/lorries/tractors/coaches come through all the time. The road is very busy and most vehicles exceed the speed limit. My husband's and neighbour's car have both been written off while stationary outside our house, both on different occasions. The driveway has no gate, it is so easy for my son to make his escape and it's such a constant worry. The county councillor, local councillor, MP, road casualty reduction officer and parish council have all been involved in trying to get traffic calming measures but as no one's been hurt yet, I don't think it's likely to happen. Getting an exchange is not a possibility so I would have to give up our secure tenancy and rent privately. My son has no road sense whatsoever. My instinct is telling me to get away from this road and move. Do you think I'm being sensible by doing this? I don't know when/or if my son will get any road sense. He has NO fears and NO sense of danger. Thanks for any advice.

GOOD NEWS in a way but also sad. Today was the Clinical Case Review for my son, the Consultant IS diagnosing ASD. Apparently the CARS form which the Child Psychologist completed, with my help, is quite significant in confirming the diagnosis. The Consultant and Child Psychologist always did think my son has ASD, I suppose this has confirmed it for them. They also said it would help him get the extra help he needs when he starts pre-school in September. He'll be 3 years old next week. Dee (A worried mum with a very recent diagnosed gorgeous ASD little boy) x

Yes, I agree with you, much easier to blame it on the parents. I was raging last week when I heard about Attachment Disorder, I can tell you! I wonder how many of you with ASD children have had comments from family/friends/health professionals (before diagnosis) who put your children's difficult behaviour down to parenting/home environment. Anyway, GOOD NEWS in a way but also sad. Today was the Clinical Case Review for my son, the Consultant IS diagnosing ASD. Apparently the CARS form which the Child Psychologist completed, with my help, is quite significant in confirming the diagnosis. The Consultant and Child Psychologist always did think my son has ASD, I suppose this has confirmed it for them. They also said it would help him get the extra help he needs when he starts pre-school in September. He'll be 3 years old next week. Dee (A worried mum with a very recent diagnosed gorgeous ASD little boy) x

Dear Mum of 3, Your post was really helpful. I agree with what you have said completely. Thanks very much. Dee xx

Thank you to all who have replied. Sally - Yes, langauge & social communication difficulties and inflexibility of play/thought + sensory issues. I wouldn't say he has rigid routines but he gets upset when changing tasks. Intonations yes and he has just recently started copying phrases, even though he has no idea what they mean! I believe it's called echolia? That's interesting what you say about phoning the NAS and asking for details on centres that diagnose ASD. I will phone, thanks very much. Dee x

Thanks BD. At our last consultant appointment, the consultant informed us that she had spoken with Portage and had put the suggested diagnosis of ASD to them. They disagreed. She obviously wanted their opinion. She's a locum consultant, and has only seen my son on 2 occasions. Dee

Hi all, I'm new to this board, posted on meet and greet recently. I have twins (boy & girl), almost 3 years old. I know my son has ASD, the Consultant agrees with this and so does the Psychologist. I was told today that Portage disagrees with ASD and they say it's Attachment Disorder! I am mad to say the least. Surely Attachment Disorder would not involve these autistic traits which my son has: Hand flapping Obsession with lights Obsession with spinning toys, spins himself in crawl position and even objects which aren't meant for spinning i.e. telephone Obsession with shapes 'Draws' circles in air with his finger Pulling (leading) me everywhere, placing my hand on his toys There are obviously other symptoms he presents but I suppose these could be explained by Attachment Order? Global Development Delay Very poor limited speech Lack of eye contact Not responding to name as if deaf (hearing checked and ok) Having no fear of anything! Unfortunately I have been stressed and anxious since my twins have been born. This is due to lack of support and my son having difficulties since he was born (started with poor feeding), then global development delay. I now feel they are trying to put the blame on me. Any advice would be greatly received! Dee

Thanks all for your replies. You've certainly given me more to think about! Bid - Sorry about quoting your post, I'm sure I clicked on reply, must have done something wrong there! There is no specific 'autistic' behaviour, only the things I mentioned. No spinning, hand flapping, 'deafness' or lining things up. I've not seen much symbolic play. The things which don't add up to autism is: Her imaginary play is very good - for instance when she is playing in the garden she sometimes goes to the shops for me with imaginary shopping bag, brings back imaginary food and hands it to me. She plays with dolls houses & figures really well. Her eye contact is excellent. Pointing excellent and often. She is definitely behind with her speech, so much so, that my son's speech therapist noticed on a home visit and has 'taken her on'. The psychologist is visiting us again next week, purely to chat about my daughter. I will mention all these things to her. Dee

Thanks Esther. I understand what you're saying. Yes, I know there is no doubt in my mind that my son has ASD. I do not need a diagnosis to tell me that. If the professionals spent a week in my house (even 24 hrs) they would know themselves! However, I'm not sure about my daughter being on the spectrum but I do have concerns. It's not possible that she has learned the behaviour from her brother because he does not present any of the same ASD traits as she does. He doesn't object to change of routine, no problem with clothes or shoes (although getting fitted for a new pair can be a bit difficult). As for shoes, I don't even want to think about it. I told my daughter again that today we would go to the shop and get new shoes. It was an absolute "no, I like the ones with holes in". I may try and get an exact pair like she already has but in next size, do you think she might accept that? I'm heard people mention "autistic tendencies". Does this mean they are not on the spectrum? Thanks. Dee

Hi Joy, Thanks for your message. My son has just started being aggressive, about 3 weeks ago so this is new to me, upsetting too. It started by him hitting his sister when she was upset or crying. It's not the noise that's affecting him because when they play together she screams with excitement sometimes, it's ear piercing, he's never hit her when she's screaming happily. It's when she's emotionally upset (from hurting herself) or having a tantrum that he hits her. Saying that, yesterday was the first time he ran up to her and pushed her over on the path outside for no reason. She cried so he tried to hit her. I told him no and that he had hurt her, so he hit me instead! Because this is a new side of his behaviour that I haven't seen before I am finding it very upsetting. The problem is when he knows he's hurt he (or if he sees anyone hurt on tv, cartoons etc), this upsets him greatly. It escalates his behaviour and he will throw himself around, very distressed. I've been telling him he's hurt me or his sister when he's hit us, maybe this is the wrong thing to do because it upsets and aggravates him even more. His sister isn't copying his ASD behaviour in any ways, ALL of the things she is presenting is completely different to my son's ASD traits. He has no problem with change of routine, new clothes etc. Good luck to you too. Dee x

Hi all, I'm new to this forum, I posted on Meet & Greet recently. I have twins, soon to be 3 years old. I posted originally about my son who I know has autism (moderate has been suggested by the psychologist). He's not been formally diagnosed yet but the CARS form was done last week. There's loads of stuff going on with professionals and he will be diagnosed soon. Anyway, this post is about his twin sister! She has some odd behaviour. I would call it odd but these are my only 2 children so they're all I've known. She is on the waiting list for the psychologist too. I've spoke to the psychologist in the past about her minor quirky ways and last week she suggested my daughter may be mildly affected by autism. I'm not too worried because it's so minor I think she will overcome the problems in time. I would really appreciate any opinions you may have on her 'strange' behaviour. I personally do think there is some ASD there. This is what I think is strange: If she has a cardigan/coat with a hood on, it ALWAYS has to be up, even if it's hot and sunny. She absolutely refuses to move to a bed, says she doesn't like it. I bought her a bed a year ago and sold it 6 months later because there was no way she was going in a bed. There's a small extra quilt hanging over the end of her cot which was used on cold nights. As it's warmer now, I took it off to put it away in the airing cupboard. She got very distressed and told me to put it back. Shoe shopping is a complete nightmare. I took her to Clarks last week, you had to see it to believe it. She tried to hit the assistant, threw the new shoes, kicked/ screamed/shouted, tried to grab and throw the shoe gauge at the assistant (needless to say we didn't get any new shoes). She refuses to wear anything in her hair. I put my hair in bunches (and her dollies), she went spare, pulling them out. She refuses to wear skirts & dresses. If you can manage to get one on, she's hysterical/distressed. Our car is parked in the drive, when we go anywhere, 99% of the time I turn right. When I turn left, she creates, shouts, screams, "wrong way" "other way". She's just started having to walk up into the car (she used to be lifted in to the car seat). Recently she has to say "up the step" and get herself into the car. If I don't allow her to do this she creates, goes rigid on me and wants to get out and do it again. I bought a different coloured beaker, same as she already has. She said she don't like it, pushes it away and won't drink out of it. That's most of the things which I think are strange. Saying that, she has brilliant eye contact, is a little behind with her speech and is very good in social situations, maybe a little shy sometimes. Thanks for reading. Dee

Thank you for your advice and welcomes. Yes, my son is beautiful, he is such a sweet little thing. He has been involved with our local Children's Development Centre for quite a while now. I think one of the main reasons he was seen so young was concern over his small head (diagnosed as Microcephaly). Initially it was the health visitor that was concerned who referred us to a paediatric consultant who was also concerned. My son had an MRI on his head and also blood tests for chromosome abnormalities and everything else. The results all came back negative, thank goodness. We've not had a formal diagnosis yet but, like I said, the CARS form was done last week. The consultant requested this to be done. During the past 6 months there has been dispute between the professionals invovled re my son having ASD. The consultant and psychologist agreed ASD (I also agree). The portage teacher & special assessment nursery team leader both disagreed on ASD. I've not discussed it with them recently but I've been told they are aiming for a "possible diagnosis" by 18th June. I think this date is when my son is due to finish at the special assessment nursery. If anyone can recommend any books I can read, I would be grateful. I know there are a lot of books out there but I would be interested to hear your recommendations. Many thanks. Dee x