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Getting a Diagnosis

squidgy

Hi all - bit new to this... My daughter is four and a half and we are waiting on a diagnosis from out local Child Development Centre as to what her funny behaviours and general delays could be. She was diagnosed with Epilepsy in August 2011 and started mainstream school in September. Since starting school they feel there is a two year learning, socialising, communication and developmental delay (all of which I have been trying to make people aware of since she was about 18 months old). Her school will not take her full time until we get a diagnosis and until her epilepsy is under control (could take up to two years to get that bit sorted). Various things have been suggested over the years by the different professionals involved such as Autism, Aspergers, ADHD, Global Developmental Delay, Auditory Processing Disorder but up until now no one has committed to anything and has always said'she will catch up, she will grow out of it or we need to see more.' To cut a long story short we are at the stage now where we have all the agencies and professionals involved that need to be, they have all submitted their reports and observations from the past two years and our appt with CDC is on 28th Feb for a diagnosis. My question is really is will they actually give us a diagnosis this time or am I getting my hopes up for nothing? I want to just know what it is so I can start getting the right support and people involved - everyone is willing to help - Social Services, statmenting, Autism Bedfordshire, playschemes, the local special school etc etc - but only once we have a diagnosis. We have had questionnaires sent to us and the school, we have numerous reports ranging from the past two years from the school, her pre school, the Ed Psych, our Epilepsy peadiatrician, the Speech Therapist, the Early Years Advisory Teacher, blood smear results, GP reports and ourselves all being sent to the Community Peadiatrician before our appt but my husband still thinks they will still not commit to anything specific. I have told him I am not leaving the room until we get a diagnosis on paper but he thinks I expecting too much. Am I getting my hopes up or should I expect them to be able to tell us something by now? Anyone any similar experiences/can offer any advice? Thx 

Parents

  • Thaks for your reply! I had read somewhere the other day I should take notes, like keep a diary from now until we our appt to give them a snapshot of daily life at home now. Might try videoing some of it too - like her tiptoe walking which is getting mroe and more obvious. I too have a folder with every report, IEP, appt and results since she was 18 months old and will be taking that with me too ; ). Her school have put in for her statement (she is on School Action Plus with an IEP) and on the basis of her epilepsy not being controlled at the moment we are looking into SN schooling. The SN school have said they would take her without a statement (based on the epilepsy) and would continue the process.

    We tried to get her diagnosed at 3yrs too but they simply told us she would 'catch up or grow out of it' and we were sent away, we went private and paid and they said the same - wait 6 months, wait a year....well here we are a year later and she is presenting more, and is further behind. The school have written in their reports that something should have been done earlier (not by me, by the professionals I was nagging) so she could have had a statement on entering school in September. I read on here people saying thier 2 or 3 year old has just been diagnosed and it really annoys me that we were fobbed off every time. Our Early Years Advisory Teacher even rang me before meeting me or my daughter to say she didn't feel the need to be involved as she didn't sound problematic enough. I really put my foot down on the phone to her and told she had to come and see her before making this judgement (and have since put in a formal complaint against her...)

    Anyways thanks again for your reply and glad we are not the only ones finding this so difficult. I will not be fobbed off this time and am definately keeping a diary now!

    xx 

Reply

  • Thaks for your reply! I had read somewhere the other day I should take notes, like keep a diary from now until we our appt to give them a snapshot of daily life at home now. Might try videoing some of it too - like her tiptoe walking which is getting mroe and more obvious. I too have a folder with every report, IEP, appt and results since she was 18 months old and will be taking that with me too ; ). Her school have put in for her statement (she is on School Action Plus with an IEP) and on the basis of her epilepsy not being controlled at the moment we are looking into SN schooling. The SN school have said they would take her without a statement (based on the epilepsy) and would continue the process.

    We tried to get her diagnosed at 3yrs too but they simply told us she would 'catch up or grow out of it' and we were sent away, we went private and paid and they said the same - wait 6 months, wait a year....well here we are a year later and she is presenting more, and is further behind. The school have written in their reports that something should have been done earlier (not by me, by the professionals I was nagging) so she could have had a statement on entering school in September. I read on here people saying thier 2 or 3 year old has just been diagnosed and it really annoys me that we were fobbed off every time. Our Early Years Advisory Teacher even rang me before meeting me or my daughter to say she didn't feel the need to be involved as she didn't sound problematic enough. I really put my foot down on the phone to her and told she had to come and see her before making this judgement (and have since put in a formal complaint against her...)

    Anyways thanks again for your reply and glad we are not the only ones finding this so difficult. I will not be fobbed off this time and am definately keeping a diary now!

    xx 

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