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Fionamg

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Posts posted by Fionamg

  1. Posted · Report reply

    I find it nearly impossible to take my three out unless I strap the youngest (3) into a pushchair or she pulls me over and trips me up. I daren't let go of her as she has no sense of danger and doesn't realise that she could get lost or hurt. She will just run out of an open door and into the road. It is very stressful as I'm down to one hand and having to concentrate on not being pulled over so its hard to concentrate on the other two as well.

    It is difficult when they are doing things that make them look badly behaved and you get the other parents tut-tutting or saying they need a good smack. You are stressed out enough already without others judging you. Just remember that children do improve and it's not going to be like this forever. It was only three years ago that my middle child (7) was doing exactly the same thing but within a year she had stopped all the worst behaviour and now comes home with good behaviour reports all the time. It is amazing what difference a year makes!

     

    Fiona

  4. Posted · Report reply

    Hi

     

    I have two children with AS and I know plenty of families with two children affected. I know one family where all five children are affected to some degree and the father has been diagnosed too. His brother's family are also badly affected with all three children affected. I know another family with three children with AS/language disorders. Girls are often harder to diagnose and get diagnosed later than boys.

     

    Fiona

  5. Posted · Report reply

    Hi Paula

     

    My friend is going to court on Thursday, ss are going for a care order. Her son also has rages which I have experienced and no-one could cope with them, disabled or not, and he is not 13 stone. They are saying his rages are because she sets no boundaries and the sw says there's nothing wrong with him. He also has issues around food except that he doesn't eat anything and is very light and also suffers from constipation. Please could you give me the name of your doctor in Guilford as she could do with an independant assessment.

    Thanks and good luck

    Fiona

  7. Posted · Edited by phasmid · Report reply

    Hi Paula

     

    Unfortunatly you are not alone. A friend of mine is going through almost exactly the same thing. It is frightening to read that it is happening to others as I am appalled by what is going on with my friend.

     

    Fiona

     

     

     

     

    hi, not sure if anyone remembers me from a few months ago but im the disabled mum that had a 10yr old son with school refusal problems.....i had the LEA threatening me with prosecution if i didnt get him in ....i had the social services telling me they would put him on the child protection register , then he had panic attacks it was awful, i was convinced he had aspergers or something similar but no-one would listen.

    anyway he had a CAMHS assessment and to cut a long story short the doctor said he was fine, in turn this sparked of a core assessment of my family, it really was horrendous!!!

    they told me i was fabricating my sons illnesses to gain attention it used to be called msbp, then the title changed to F11 and just recently it has been re-named somatisation.

    anyway they put my son on the child protection register as i had withdrawn him from school, i couldnt watch him have panic attacks any longer........to the social services this was emotional harm, they said i was purposely isolating my son from his peers.......they told me they would put him on the register under physical harm also as he has a weight problem and they felt i wasnt taking it seriously enough, i was but told them that my son has rages which makes it difficult to deny him things, so i had to pick my fights carefully with him, he was destructive and could be violent when he snapped. to them , so i was told it wasnt for me to prioritise his behavioural problems and put them before his health....DUH!!!

    Anyway despite the restrictions we now had on our lives i was far from happy, i knew that despite there opinions and charecter assasinations my son needed help.

    i saved up enough money to have my son seen by an independant consultant from guilford recommended to me by my solicitor.........

    The outcome speaks for itself, my son was diagnosed with aspergers , tourettes, odd, adhd, and sensory integration disorder.......

    i am now in the throws of reporting the camhs doctor to the GMC , one missed disorder i could waver but theres no way they missed all these......i am also putting in a complaint to the GSCC about the appalling treatment we recieved from the social services and at the moment am waiting for confirmation so that i can take XXXXXX LEA to a judicial review as after 2years without education they still refuse to assess my sons special needs and not only that they have flatly refused to tutor him at home until he recieves treatment.

    i have shared this with you guys as a warning, i dont think i shall ever trust professionals again in the same way.......they have twisted truths, told blatent lies , wanted me to sign my son over to their care, demoralised and bullied us to the point where i seriously collapsed one day and screamed my head off and couldnt stop screaming.......

    i live in hope that one day my son will actually recieve the support he so rightly deserves, until then we are isolated together, with the ss still in our lives scrutinising everything we do.....it has to get better, i hope this post will serve to help others to follow there gut when it comes to there children........im not saying everyone is the same but there were obvious reasons as to why we recieved and are still not recieving any help....

    thank you so much for taking the time to read this......bless!

    hugs,

    paula...

     

  8. Posted · Report reply

    I have posted but thought I'd better introduce myself. My name is Fiona and I have three children. The oldest, my son (8) has ASD, my daughter (7) has DiGeorge Syndrome (a deletion on chromosome 22) and my youngest daughter (3) has ASD. My children have multiple allergies such as milk, eggs, nuts, penicillin and my oldest is on a milk-free diet. My youngest has been on a milk-free diet since birth and we are now trying her on a gluten-free diet with good results so far.

     

    My son had a terrible time with cows milk and suffered very bad eczma until I took him off it. I then (rather foolishly) put him back on cows milk at two and within a couple of weeks he had lost all his speech and all his understanding of speech, which had been good. I didn't make a connection between milk and losing speech as you don't expect cows milk to have that sort of effect! We had him assessed and got a diagnosis of autism and I was told that he had had an autistic regression. It wasn't until 18 months later that I made the connection and took him off cows milk again. In a week he went from single words to putting words together and has just gone on from there. I'm not saying it cured his autism, he is still just as autistic but he is no longer lethargic, tired all the time, can concentrate and so can learn. He is in a mainstream school and is doing well.

     

    I took no chances with my youngest and never put her on cows milk. She has however stopped making progress and has gone from being 'intellegent' which is what we were told at her diagnosis to having severe learning difficulties only 18 months later, so she must have made no progress at all during that time. In desperation and bearing in mind my sons' experience I am now trying a gluten-free diet. Time will tell.

     

    Sorry this is so long but I had complicated children (don't we all)

     

    Fiona

  9. Posted · Report reply

    My daughter has now been on the diet for a grand total of three weeks and there have been improvements in the sensivivity of her head which was hypersensitive. The nursery have noticed improvements in her ability to sit, she no longer squirms around constantly, her concentration is better and her eye contact has improved.

     

    At two when she was diagnosed the speech therapist, who I have know a long time and is very experienced, said that she thought Alison would do alright but 18 months down the line the E.P. has said that she is so far behind that she has severe learning difficulties. The main difference between then and now was the amount of bread Alison was eating. She had gone from not liking bread to eating up to six slices a day. We are continuing with the "silly" diet and see how far we get.

     

    Fiona

  10. Posted · Report reply

    We get the gluten free chicken nuggets and fish fingers from Sainsbury's but their sausages were tough going so we get gluten free sausages from M&S. There are also a lot of 100% beef beef-burgers which are gluten free. There's so much stuff out at the moment that Alison has hardly noticed the difference. Our only difficult time is breakfast (hence the corn flake question).

     

    Fiona

     

     

    Just a quickie to say we got Whole Earth cornflakes in Waitrose last week - reasonably priced and the ingredients are just corn, raw cane sugar, salt and sunflower lecethin.

     

    Also to anyone who is struggling trying to make creations that look like chicken nuggets or fish fingers (which I was for ages!) STRUGGLE NO MORE! Take a look at the new range of stuff at Sainsburys in the free from section - so much child friendly stuff I literally nearly sobbed!

  11. Posted · Report reply

    Thanks for that, that's a good idea. On the coeliacs website Tesco's own brand has just been put back on the list of gluten-free but the name brands are definitely out. I shall try a specialist brand just to be on the safe side.

     

    Fiona

     

     

     

    Hi fiona -

     

    I'm lucky, Ben can handle cornflakes/rice crispies that contain malt EXTRACT... He can't handle the name brands, but Tesco's own have no side effects for him...

     

    starting out on the diet I'd be inclined to go for a specialist brand like Kallo, and once you've established whether the diet(s) ARE helpful you can slowly test individual products to see just what effect they do (or don't) have...

     

    hope that's helpful

     

    BD :D

  13. Posted · Report reply

    Hi

    My name is Fiona and I have started my daughter Alison (3) on a GF diet. We are now into the second week and have already seen improvements. Alison has lost the sensitivity she had about her head and I have been able to brush her teeth and wash her hair for the first time in 18 months without screaming, yelling, running round the house (and that's just me!).

     

    I'm a bit confused about the status of cornflakes. Most own brand corn flakes appear on the gluten free list but they also contain barley extract which I thought was a source of gluten. I know that coeliacs can tolerate a certain amount of barley but wasn't sure if it was the same for GF diets for autistics. Are corn flakes alright?

     

    I am an old hand at milk-free diets as my son (8) is also autistic and is lactose intolerent as well as allergic to cows milk so the CF diet is situation normal as far as we are concerned.

     

    Hope someone can help

     

    Fiona

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