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How are we all

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  • Tink, Isaac also has to have patches for 2 hours a day, it started off at 4 hours and has now gone down, I am hoping his sight is going to be good enough to be reviewed for surgery to correct his squint in January. I know what you mean about the patching hitting home, the first time I put Isaac's patch on I just couldnt stop crying and I really hated taking him out whilst he was wearing it, now I have come to terms with it although when people feel the need to make comments such as 'eye eye mate' then I do give them a piece of my mind and tell them how rude they are. I was the same when his major buggy arrived, it took me 2 days to be able to even unfold it and sit him in it inside and another few days before I could bring myself to take him out side in it, things do hit home in so many ways but I just remind myself of how gorgeous my boy is and how blessed I am to have him and I find that helps, although dont get me wrong I have several wobble days about it all.

    We had a call from his paed the other day to see whether I thought he needed reviewing, I just said I dont know, you are the one with the medical training, what do you think? Isaac recently grabbed hold of a sparkler that had just gone out and burnt his hand, any 'normal' child would have screamed the place down but Isaac just totally shut down, no reaction at all, I told him about that and also mentioned that the nuerologist had mentioned autism and aspergers and I asked whether that was his diagnosis, paed would not commit himself and justsaid that although that was the thought of everyone who had seen Isaac he didnt want to 'label' him :evil: that made me so mad, if that is what he has got then he should be diagnosed with it, just because the paed doesnt like lables, I pointed out to him that he was already labelled as several things and none of them were particularly constructive and maybe if he had an actual diagnosis then people would stop labelling him. Not sure he appreciated my input but agreed to see him again in the new year, he did say that if he didnt get a concrete diagnosis that he would refer him to CAMH (over my dead body) I think if I dont get answers in January that I am going to ask for a referal to a different hospital, he has been seen now for over 2 years and still I feel like I am banging my head against a brick wall.

    Sorry for the rant, been without internet for 2 weeks and had nowhere to let it all out.
  • Hayley1 that sounds awful I hope he is ok now that must have been worrying for you. I think you are right to put you point across whether the paed likes it or not. We found out recently that we have actually been overlooked for a community paed we should have been seeing one regularly oh well roll on the next appointment
  • It is worrying but I am used to it now, it is almost like he doesnt know how to react to pain so he just shuts down, he has hurt himself before (although not as badly as that) and he just shuts down, oddly enough his paed rang me again today to discuss when would be best for him to see a geneticist, I told him that I would like a bit of a break, just now I am feeling a bit snowed under (pardon the pun) with juggling all his appointments and would like a few weeks of not having to worry about it, he said fine he would arrange it for the new year, it was like I was talking to a different dr today, he was helpful supportive and understanding, sometimes I think it would be easier if he were either stand offish all the time or nice all the time at least then I would know where I stood with him, he openly admitted today that Isaac does have a lot of problems and that he is really at a loss to give an over arching diagnosis, hence the referral to the genetics people, they maybe able to piece all his problems together, his behaviour, his social and communication difficulties, his hypermobility, sensory problems together with the more medical ones like squint, bilateral hydroceles preauricular sinus and exceptionally large head and see something that everyone else has missed. I am a bit all over the place now as I had never really thought about all the problems together as a whole and there are loads, I guess it hits home when you think about it like that.

    Chriss, cant believe Paul has been overlooked, that is terrible, still I often wonder what I would do with all my spare time if I didnt have all these appointments to fill it with xxxx
  • yes when you think of everything all together it is a little overwhelming. I know have a letter to carry round in case for example we are at out of hours or were ever admitted to hospital etc with the professional explanation of Paul's condition which will be helpful but is shocking when you read it.

    Yes I think we should have been seeing the paed more regularly but not for any help with a diagnosis, just day to day questions and things, like how to plan care in nursery etc. but I suppose I haven't noticed as we are inundated with appointments.

    I have recently cancelled a further biopsy for me well delayed it really as I'm expecting another baby, july 2011 very excited and a bit scared too
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