Meeeeeeeeeee's Blog

full of hope | March 17, 2009

After my earlier post today via my phone,things are picking up.
Isaac had lost a little weight but nothing to cause concern and his medicine isn’t fully controlling his epilepsy but seems to be working as well as expected so We don’t have to take the riskier option.
whilst in with the paediatric specialist he informed me he had recieved the disability forms and had to fill in five questions and his secretary would type up a letter and send it off straightaway.The questions were how many seizures does Issac have a day/ night and what type,he put up to five a day and two a night gran mals,full body shakes/jerks.Can they be predicted ? he put no,Is there a warning sign or aura before? again he put no,as not all types do and how can a two year old tell you if he did.Does he need more care supervision than a normal two year old and at risk of getting hurt because of disability? he put yes needs to be kept eye on.
The one he needed information on and was waiting to ask me was when was Isaacs last seizure,which was on the bus this morning .
He has put him down with epilepsy and autistic traits as he is too young to get a diagnosis of autism until he is nearer to four.
The doctor thought the questions on the forms were as silly as I did.
I have to wait for the beaurocrats to make a decision what help if any they decide to give him,should take another couple of weeks.
oh and the regression thing maybe down to trauma of the hospitals and tests and he should make a full recovery or sometimes memory is effected with epilepsy and medication,so to keep on practicing and refreshing his memory should help.
Isaac has had or rather got a busy week,pre-school yesterday and he came out with a sticker saying I knew the day of the week! (which amazed me as I didn’t even know he knew about time concept) he had a trip to the hospital today and is on his trip to the snow dome on friday, and he has a lovely new car to have a ride in that was a bargain £30 off ebay brand new battery operated one which I couldn’t even wire up so had to ask a friend from church to do which he did last night for me,Isaac decided the box made a lovely tractor,then robin decided it made a lovely tardis and Isaac reclaimed it this time as an aeroplane.
I think later on this week I’ll do a post of a week in pictures,I may even put the one of robin dressed as a girl for comic relief at school he raised £50 in sponsorship money only two boys were brave enough to turn up as girls one boy a yr 11 boy went the whole way and wore thongs and stockings.

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10 Comments »

  1. Im taking it your Uk based as am I. Reason being is I remember having to ask my doctor to fill out little mans form, And my doctor also remarked on the silly questions. Pleased to hear things are getting better and you no longer need to take the risker route:)
    Love this blog.x

    Comment by clairelouise82 — March 17, 2009 @ 6:42 pm

    • Clairelouise: thanks I’m Uk based, those forms are silly and half the questions irrelevant, I’m glad you popped by 🙂 x x

      Comment by fraggle — March 17, 2009 @ 7:12 pm

  2. Well, I hope good things come from filling out those forms – you never know 🙂

    Comment by nikkipolani — March 17, 2009 @ 8:41 pm

    • Nikki: yes hopefuly he will get extra help and can lead a more normal life, he can go six months without going back to the hospital so thats a blessing x

      Comment by fraggle — March 17, 2009 @ 8:56 pm

  3. Pleased ya more hopeful, now get photoblogging 🙂 xx

    Comment by rob — March 17, 2009 @ 8:50 pm

    • Dimples: I will but they will be quick snap shots nowhere near as good as your photos x

      Comment by fraggle — March 17, 2009 @ 8:58 pm

  4. Heart breaking. The questions can be ridiculous and repetitive, I often leave these appointments upset. I remember one day I had to take my daughter to the ENT clinic and then to a pre-assessment with the space of 30 mins and the two were almost identical. On top of that my daughter cried the whole time and I remember just feeling drained and thinking that much of that was unnecessary.

    My daughter just turned three on the 3rd of March and we have a diagnoses meeting planned for the end of April. So I would be concerned that hey are saying wait until he’s four. We had to insist and demand that they diagnose. We did that after we found out that every person who works with my daughter agree that it is autism but the only one who can diagnose is the paediatrician and they purposely drag their feet.

    I wish you and your son all the best.

    Comment by Abdullah — March 18, 2009 @ 9:17 am

    • Abdullah:thanks yes I leave upset and especially if you explain things to Drs and the child does the opposite as usually does or they do something on the way home which backs up what you say, I come out sometimes thinking the Drs think I’m neurotic mum or stupid it’s people who see him regularly that notice the problems, not a short time with paeds will get full picture. I’m going back in 6 mths to see the development man.

      Comment by fraggle — March 18, 2009 @ 11:45 am

  5. Hang in there…I am totally taking you up on your wine! 🙂

    Comment by goodbadandugly2 — March 18, 2009 @ 5:32 pm

  6. goodbadandtheugly: have a nice drink for me Shiraz is my favourite x x

    Comment by fraggle — March 18, 2009 @ 10:42 pm


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