Forum home Toddlers & older children Children with special needs

hayley 1

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  • I know what you mean about it stressing you out, I keep telling myself that having a name for it, isnt going to make it any different but somehow it will just help. I am the sort of person that needs reasons and if I at least knew what was wrong with him then I could maybe understand a bit more. Off to see the paed in 10 days so hopefully will start to get somewhere then. xx
  • Yeah I was chatting about the difference between having and not having a diagnosis, and mostly for me I realised at the moment it would benefit me as far as other people's perception goes. Sounds mad as I've never really been bothered about what other people think, but for things like getting other people to understand how it is for us seems important at the moment.

    Hope your next appt goes well. We had a last minute appt today, got a phone call last night after The support worker had been round to say could we call in today for a quick appt with the Neuro, she hadn't realised how much noise Paul made while asleep so she wanted to check his tonsils etc. They may want to do a sleep study to ensure he is getting good quality sleep as it could be affecting his fatigue if he isn't.

    So more appointments, we've got 2 more appointments this week, on top of the 2 we have had today, what joy haha
  • Never a dull moment, I think we should all have a wing at our local hospitals dedicated to us seeing as we frequent them so much!! Lydia was so chuffed that we went to hospital on Tuesday and it wasn't for her!!
  • Never a dull moment, I think we should all have a wing at our local hospitals dedicated to us seeing as we frequent them so much!! Lydia was so chuffed that we went to hospital on Tuesday and it wasn't for her!!

    :lol: totally agree, I sometimes feel like selling the house and moving in to the hospital.
  • Haha, Wed have to have beds at 3 hospitals we got to one 5 mins away, one 15 mins away and one 30 mins away regularly

    well the day after I posted that about having 2 appointments on Tuesday, I got a letter saying we should have been at ENT that day too but it never came in time so knew nothing about it. Was gutted as it was to clear Paul's ears again, and because we never got there he did even worse than last time in his hearing test the day after. I'm gutted actually, we've started signing again with him and that seems to be working but I worry about his understanding of the world as he gets bigger. They are talking about possibly having anasthetic to clear themk if he won't co-operate etc not a fan of that really but want them cleared.

    Its madness
  • How useless of them not to get the letter to you in time. Why do his ears clog up? If he was to have them cleared would his ears stay clear or would they block up again? If having anaesthetic in order to clear them once and for all is an option they maybe its worth doing for his sake. I think you're doing an amazing job. Stay strong. x

    Charlotte
  • Hmm not sure yet, he had the left one cleared in Jan and it is just as bad as the other one now which wasn't touched so it obviously fills up really quick, GP said he hadn't seen anyhting like it in such a little boy. Not sure what causes it but I have read a paper which suggests children with extra syliva can be a cause.

    I'm hoping we get an appointment soon and think I might take someone with me this time for morale support
  • I think that taking someone with you is a very good idea, I always find that other people take more in than I do and ask questions that I don't always think of. My mum is always the one I ask if hubby can't do it.
  • We have movement, we now have an appointment with the Occuptational Therapists on 8th April who are coming to our house to see where we can make things easier for Liddy and myself, I'm so pleased.
  • Sounds great, don't forget, if they put the application through based on her needs, you won't pay for the changes, but if you did it for your needs you would pay a contribution based on your family income I didn't know that so its worth taking into consideration. Hope it goes well
  • Thank you for that information, I'm so glad i can come on here and have advice about this minefield!!!

    Charlotte
  • Hi laides, just a quick update, I had Isaacs paed review the other week, was going to post sooner but he caught a nasty infection and ended up in hospital as his temp was above 40 and he was so dehydrated that they tried unsuccessfully 3 times to get a drip in his hand, eventually they got it in his foot and he is now fully recovered. Anyhow the paed said that in some children Isaacs age it is glaringly obvious what the problem is, but with Isaac he ticks lots of boxes for lots of things but nothing that could say exactly what his problems are, he hasnt ruled out autistic spectrum disorder or aspergers but is reluctant to give a daignosis at his age as he is still developing and his problems could just be down to development delay (he is currently delayed at least 10 months in all areas and significantly more in others :\( )

    I felt awful when he said that as I feel responsible, when Isaac was 4 months old was the time hubby got diagnosed with his tumors, then twice in the next 6 months we were told he was going to die (thankfully the drs were wrong), obviously during this time, my full focus wasnt on Isaac so I cant help but blame myself, I fell that if I was more focussed and had spent more time doing what I should be doing rather than making trips back and forth to the hospital then he may be ok. The paed basically told me that I needed to get some help to come to terms with what has happened with hubby and said he would review him again in a few months time.

    I phoned my gp to try and get help for me and was basically told that unless I am suicidal (which I am not) then I am not really considered a needy case :x so I phoned my health visitor to rant and she said she would contact early years to find out exactly what is happening with Isaac, she phoned me back a few days later and told me that she didnt need to contact early years as the head of the team had contacted her and said that the Speech and Language therapist who is also one of the head people and the one all the paeds look up to is not happy with the way things are going, she is not happy that her recommendation for OT has not been put forward by other members of the team and that Isaac is not getting the help and support he needs, she wants a round the table meeting with everyone involved with him present, that means that me and hubby, Nursery staff, physio, speech therapist, early years specialist support teacher, consultant paed, health visitor and head of early years are going to have a meeting to discuss the best way forward.

    At last I feel we might be getting somewhere. Not sure when this meeting will be but it is likely to be in the next few months, I will let you know how it goes.

    So much for the quick update :lol: Hope you are both well and not too bogged down with appointments. xxxx
  • So sorry to hear that Izaac was so poorly you must have been very worried. Glad he's back to normal

    Senior Speech and Language Therapists have so much influence I'm glad you have a good one as she sounds like she knows how to get things moving then. We have a Health Care review with all people involved (although this doesn't include the consultants as they generally don't have time to attend) but it does help to get things in place for the benefit of the child. Hope it goes well.

    I think you should push your GP for some sort of councelling, I think it would benefit you as it may help you come to terms with undrestanding that whatever is happening at the moment is no one's fault let alone yours. We all feel guilty as parents and I can't even begin to imagine how hard your life must have been during that time, but there is no way, I'm sure you'll agree, that you would have been able to do anything differently.

    Listen take care of yourself you're doing a fantastic job x x x
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