Fingers crossed for EEG on Thursday, let us know how Isaac gets on. We went to paediatrician on Wednesday who has confirmed the scoliosis is getting worse. Physio should help with strengthening the stomach muscles in a bid to improve her posture. He has also advised me to write to our Education Authority and Occupational Therapy team on the council to get things in place to make Lydia's life easier. Once Christmas is out of the way I will get on with that. Just got the big team to meet with on January 5th.
Good luck with your big meeting on 5th Charlotte, hopefully you will get some things in place to make Lydias and your life easier.
I just checked Isaacs appointment letter and the hospital have sent the appointment for 31 Dec 2010!!!! what a total bunch of idiots, every time I have dealings with that particular hospital they manage to mess something up, hence the reason I dont want to go there, I am going to have to wait until Tuesday to try and sort it out, hopefully they will be able to still give us the appointment on Thurs as I have phsyced my self up for it now, if they cant then I think I will just cance it for a while, I just can't cope with any more cock ups at the moment.
The paediatrician is writing to them but he strongly advised me to write to both of them too to speed things along especially with her hopefully starting nursery next Sept. He just said if they get letters from both sides ie health and home then they were more likely to act faster.
Right Ladies, sorry but I need a major rant. Just as we think we might finally be gettting somewhere I get my letter telling me that Isaac case will be discussed at the nest early years meeting which is fine, today I got the letter giving me the reccomendations from that meeting, all it says is that Isaac will be seen by a speech and language therapist!!!!!! Now I knew that he would be seen by her as part of a team but that is the one area of his development I am not concerned about, I am so mad, all the concerns I have and everything I bought up at his 2 1/2 year check and his last hospital meeting seem to have been overlooked, there was nothing about his physical problems or his behavioural problems which they had said showed autistic traits, even the paed who has referred him to the early years team and is the community paed on the early years team commented on how good his speech was so why is that the only proffesional who he is going to see. I feel like I am back at square 1 and I am just so sick of it.
I have tried to phone my hv who is my contact person and she isnt at work at the moment so now I just have to sit a stress until she is
I don't blame you, I'd be just as annoyed if it were me. Why is ot always such a battle to get anywhere with these professionals? Just try to stay calm and hope that your hv gets back to work soon.
Oh how crap just thr wrong time of year for having to mess about trying to get things done, no one is ever in work Grrr. don't blame you for ranting, rant away on here so you're calm and collected when you finally get in touch with HV. hopefully you'll get an answer to why they haven't concentrated on anything else.
Ha ha, you did confuse me, it doesnt take a lot though obviously my age (which is 30something) Just went through my calender from last year to transfer all the birthday dates across to this years calender, depressing reading, there was only 1 month last year that Isaac didnt have a hospital appointment, no wonder I am a physical and emotional wreck.
aren't you two organised? I haven't got there yet, think I'm better at all that when I'm here on my own, love having husband about but it throws me out of my routine, I've got a lovely new diary too and like you loads to put in it ha, how do we do it?
Hi lovely ladies, I had a phone call from my hv about the SaLT appointment and apparantly the person that I will be seeing is the sALT but she is also the person who does all the initial assessments, she then takes refers him to one of the 3 community paeds ( already know which one it will be as its the one I have always seen) and she makes reccommendations for all the other people he should see and which support groups to go to, she is not just the speech and launguage therapist, I did tell them that they could have made the letter a little clearer and it might not have caused so much stress. Looks like we are back on track, hopefully the appointment wont be too long coming. Hope you are all fine xx
Oh that's great sounds like they are on the same page as you now. Totally no need for such a standard letter though, like you say, all that stress over Christmas, anyway good news and yes hopefully you'll get the appt pretty quick.
Well it's all happening, the SaLT phoned today, she is coming to see Isaac on 25 Jan, feels like forever away at the moment but at least we have a date, I will keep you posted x
That's fantastic!! We're nearly close to a diagnosis, they think it's a RYR Myopathy (general muscle weakness) and her dna will confirm this if it's the case. It should be non-progressive but she will need help at nursery, school etc so we have written to local education sen team. We have also been assigned an occupational physiotherapist too which we'll see mif Feb. It's all go!! x x
that's great news Hayley and Charlotte that sounds very positive at least you look as though you're getting closer to a diagnosis.
I had tried to post before but BE wiped it, blast, I was mostly having a bit of a moan so might just have a little cry to myself instead sorry girls, feeling blue now thinking about our lack of any progress on the diagnosis front. I shoudln't even care it makes no difference as we already have all the help we need but just finding myself getting a little upset about it tonight.
Replies
Charlotte
Charlotte, is it down to you to contact EA and OT? our physio did that for us or is that specifically for school? good luck with the Jan meeting
speak soon x
I just checked Isaacs appointment letter and the hospital have sent the appointment for 31 Dec 2010!!!! what a total bunch of idiots, every time I have dealings with that particular hospital they manage to mess something up, hence the reason I dont want to go there, I am going to have to wait until Tuesday to try and sort it out, hopefully they will be able to still give us the appointment on Thurs as I have phsyced my self up for it now, if they cant then I think I will just cance it for a while, I just can't cope with any more cock ups at the moment.
I have tried to phone my hv who is my contact person and she isnt at work at the moment so now I just have to sit a stress until she is
Sorry for the rant but I really need to offload
I had tried to post before but BE wiped it, blast, I was mostly having a bit of a moan so might just have a little cry to myself instead sorry girls, feeling blue now thinking about our lack of any progress on the diagnosis front. I shoudln't even care it makes no difference as we already have all the help we need but just finding myself getting a little upset about it tonight.