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millyz

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About millyz

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    Salisbury Hill
  • Birthday 09/13/1971

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    oxon
  1. Blimey - that's unheard of!!!! Well done you!!! Now you've got their attention, get as much as you can from them xx Smiley - In our area cerebral palsy, epilepsy, ADHD, heart defects and social/emotional problems don't fit the criteria for Childrens Disability either!!
  2. HAPPY BIRTHDAY !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! You live quite near me - if only I could get out in the evenings, we could have hit the fantastic nightlife there is here!!?? Hope you have a lovely day xx
  3. millyz

    news from Loulou

    Congratulations - what great news. I can just imagine how cute and diddy he is. My twins were 5 weeks early but weighed 5lbs 6oz and 5lbs 15oz. They seemed so little, and my daughter used they're first sleepsuits for dolls clothes. Luckily my boys only stayed in special care for half a day and came home after 4 days in total. Lets hope he puts on some weight and comes home really soon I feel all happy for you - well done. with love to you all milly x <'>
  4. I read that it could be around 30% of children with Autism are epileptic!? But it's more likely to be a sensory shut down. Hev Do get it checked out. EEG's are non-invasive but don't always detect any abnormal activity. Keep a diary though to show the doctor. My daughter has epilepsy, but the underlying cause for her is brain damage (hemiplegia) so we were sort of expecting it. This includes absences among other things and therefore she is medicated. I don't know that medication is always necessary for absences. Talk to the doctor, see if you get refferred for further tests - and take it from there. All the best and let us know how you get on, we'll be here to offer more advice and support x
  5. millyz

    house

    CONGRATULATIONS!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! You must be really excited Don't envy you all the packing though - but it'll be worth it when you're all settled x
  6. Well - tonight I am a bread pudding!!!!!!!!!!!!!!!!!! mmmmmmmmmmmmm
  7. I live literally round the corner from that family. Don't 'know' them personally, but there are strong opinions round here! Won't say any more on that
  8. Keep a record of any conversations you have with warmfront (just in case there's a problem) I made an application cos I'm on Income support with a disabled child ( i think income had to be below �15,000) Someone came round and did an assessment and said they can do loft insulation, new front and back door and cover my boiler for 5 years. A company then got in touch to arrange loft insulation. I cleard the loft completely, job was done as arranged, but they also put draught excluder round the front and back doors - strange if they were being replaced. But that wasn't their contract - must be someone else. Waited ,heard nothing. Contacted warm front who had no record of new doors. oh well Then my boiler packed up a few months ago. After a couple of phone calls and queries eg - we're not due to fit a new boiler, or we didn't put that boiler in, or you haven't got cover with us cos we don't offer cover blah blah blah. They said we'll contact you in 2 weeks. Heard nothing, called again - no record! Then I was given the number of the contractor and I had to deal directly with them. Called them and told could take up to 6 months. Back to warmfront. ' We don't do emergency breakdown cover so you will have to wait til the contractors have a space.' What's the point of offering this to a family with a disabled child- heating is essential ( this was end Sept/beg Nov) Got in touch with council who then made a few calls and stressed the urgency etc. He was pretty helpful. Eventually got boiler fixed about 8 weeks later.!!!!! The job would have cost about �150 - but if I had gone and got it done, they would not have paid and would also have cancelled my boiler cover and grant So a bit of advice - write down everything they say and take names, just in case they start denying things
  9. I noticed this milk on sale in Tescos the other day (in a blue container). Don't need to use it myself but happened to spot it. I think it was about 96/98p a pint.
  10. I FEEL LIKE I'VE BEEN BANGING MY HEAD AGAINST A BRICK WALL FOR NEARLY 8 1/2 YEARS NOW.WE SEE CARDIOLOGIST, NEUROLOGIST, OTHOPEADICS, ORTHOTICS, EYE HOSPITAL, PAEDIATRICIAN, PSYCHOLOGISTS, PSYCHIATRISTS, EPILEPSY SPECIALISTS,CAMHS AND GOODNESS KNOWS WHO ELSE. THEY ALL HAVE DIFFERENT OPINIONS, PASS THE BUCK, CHANGE MEDS, AGREE/DISAGREE ON WHAT THE LAST DOCTOR SAID. MANY OF THEM HAVE LEFT AND YOU GET VARIOUS LOCUMS AND START ALL OVER AGAIN. IT'S BEYOND A JOKE. AND STILL QUESTIONABLE DIAGNOSIS. COULD BE THIS THAT OR THE OTHER.........WELL TRY THIS FOR A WHILE ANYWAY! THEN YOU HAVE ALL THE EDUCATION SIDE WITH ED PSYCH,SENCO,EBD OUTREACH, PHYSICAL DISABILITY SERVICES,LEA,STATEMENTING,IEP'S, - FIGHTING WITH THE SCHOOL. NOT KNOWING IF YOUR CHILD IS BEING SUPPORTED, TAUGHT OR JUST REMOVED FROM THE CLASSROOM TO MAKE IT EASIER FOR EVERYONE ELSE. THERE IS NO SUCH THING AS INCLUSION! SORRY - THAT WAS ONE HELL OF A MOAN. BEEN CRYING OVER THIS AGAIN. EVERY SO OFTEN I HIT THAT POINT OF SHEER FRUSTRATION. MY DAUGHTER IS SUFFERING ASWELL. I THINK SHE IS REALLY DEPRESSED, HAS LOW SELF ESTEEM. HOW IS SHE EXPECTED TO DEAL WITH ALL THIS. I WAS WORRIED ABOUT HER FUTURE, I DIDN'T THINK ALL THIS WOULD HAPPEN AND PROBABLY MAKE MATTERS WORSE THAN THEY WOULD HAVE BEEN ANYWAY FOR A KID WITH HEART PROBS,EPILEPSY AND CP. WHAT ARE WE TO DO EH? WHAT A LIFE! OH - AND WHEN DO I GET TIME TO EVEN THINK ABOUT MY 2 BOYS AND HOW THEY ARE? NOT HAVING A GO AT ANYONE. SOMETIMES IT HELPS TO WRITE IT DOWN. FEEL A BIT BETTER ( WELL PROBABLY NOT ACTUALLY) NOW THAT I HAVE BASHED THE KEYBOARD IN PURE FRUSTRATION. THANKS IF YOU DID READ THIS - SORRY. YOU CAN ALL CALL ME MRS MOANY!!!!!!!! XXXXXXXXXXXXX
  11. Hi everyone, My 8 year old daughter has cerebral palsy left hemiplegia and has had very challenging behaviour for some time. Last year she spaent 8 weeks in residential mental health service unit to observe these behaviours. Her paediatrician had diagnosed ADHD and wanted to put her straight on Ritalin, but with the hemi, epilepsy and heart defect, it was thought important to go through further investigation. In case these behaviours were epilepsy/medication related. The fact that she has CP and damage to the right parietal and frontal lobes can, among other thing, affect behaviour, emotions and inhibitions. It also has an affect on some percetion and cognitive skills. ADHD was diagnosed via the Conners Rating Scale and she scored high for Oppositional Defiance Disorder too. She has been on Strattera since last April and they are now doubling her dose as I don't think it has made a noticeable difference. It has been queried in the past whether she is more ASD than ADHD and one or two doctors agree, others don't comment and CAMHS asked why I was so keen to have a specific diagnosis. What I am asking is - Is there anyone else here who has a child with underlying problems similar to my daughter?(eg hemiplegia, brain damage, epilepsy etc) and was anyone else diagnosed with ADHD/ODD when they felt there was more to it than that. If anyone is able to point me in the right direction, I would be grateul and describe some of the difficulties she has that make me think it is not ADHD or at least not on its own. Thanks
  12. I LIVE IN OXFORDSHIRE (WHERE ARE YOU FROM NIKI?) LEA WERE PRETTY GOOD GETTING THE STATEMENT SORTED,ALTHOUGH NOT ACTUALLY HAD ANY CONTACT WITH THEM IN PERSON (ALL DONE THROUGH POST) AND NO CONTACT WITH THEM SINCE - DON'T THEY HAVE ANY INPUT DIRECT WITH CHILD OR PARENT?
  13. millyz

    SEN FUNDS

    Hi - can anyone answer this question? If a child has a statement of 20 hours per week but has been in hospital for 8 weeks for behaviour and associated mental health issues, would the funds that were allocated that child be carried over? If funds are worked out on a per hour system, would that child now be 'owed' 160 hours of special education (or equipment) or more useful, training for staff to learn about childs needs? Or would the school have spent that money elsewhere and the child continues to be supported by untrained? This one has me thinking (obviously it is my child we are talking about)She has complex needs and the TA's and LSA's have no formal training specifically aimed at her needs, so she does not have consistency in education and management.
  14. millyz

    ATOMOXETINE

    Thanks for your reply kazzdt. I also thought Ritalin would be the obvious med to start with. When we did the Conners last year, the paed mentioned it immediately. But then, he didn't have any interest in her heart condition or epilepsy. If I had followed his advice and put her on the Ritalin, she wouldn't have had the necessary ECG's, blood tests, EEG's and other investigations to make sure it will be safe. Maybe Atomoxetine is being recommended because it might be safer for her. I believe she does have ASD but am prepared to give the docs the chance to work with the ADHD first. I can see the reasoning behind it. I was however given the impression that it wouldn't take too long to see any benefits and the ASD would be reassessed and if necessary, diagnosed sooner rather than later. I hope it doesn't go on and on for another couple of years. I feel like we have struggled for the last 7.5 years and still don't have the full picture of my daughter. Every time I feel I've done all I can, something else crops up. At birth, it was the heart defect. At 1 it was cerebral palsy. At 3 it was absences. Then eye problems.At 5 it was epilepsy. And since about age 4 it's been behaviour at an increasingly unmanageable rate. Sometimes I think 'okay,that's enough for one kid - can we stop there and have a chance to live our lives outside hospitals' You say it took you 2 years. What meds have you used? What affect did it have on the ADHD or ASD? Hope everything is going well now - and thanks for your advice Millyz x
  15. millyz

    ATOMOXETINE

    Hi all. I see there are a few people here whose kids have a diagnosis of ADHD alongside ASD. Was wondering if anyone has any info they can share on the drug Atomoxetine? My 7 year old daughter is undergoing assessment and diagnosis. ADHD has been confirmed but the psychologist says that she needs to start ADHD meds before they reassess the other behaviours (ASD/Aspergers). Kids can display signs of ASD if the ADHD is untreated. If the meds work, she will hopefully be in a better position to interact socially and some of the skills she lacks, that point to ASD, may actually improve. So he doesn't want to dx ASD or Aspergers until she has had a chance with the meds. Does anyone else have experience of this when diagnosing ADHD and ASD? Thanks x
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