Good news that you are getting closer to a diagnosis Charlotte at least now you can start getting things into place ready for nursery and school etc.
Chriss, we all get like that at times, me especially most of the time I am quite upbeat about it but there are times when I just feel like I am banging my head against a brick wall, you will get there, and we are always here for you to have a rant about when you feel low, you are not alone, take care xxxxxxxxx
thanks guys, just struggling at the moment, I've got a suspected cartilage tear in my knee after falling down the stairs, had no councelling for a few weeks due to circumstances and loads of appointments coming up so feeling a bit sorry for myself.
next appt (apart from ENT) is Neurology, hoping to see whether they have contacted another hospital to see if they'll test for more rare conditions.
Hope your appointments go well and you start getting some answers, Isaacs next appointment is with the SaLT on Monday, she is going to do a whole assessment of him and refer him to the people she thinks he needs to see, I was feeling ok about it, but now it is getting closer I am feeling a bit low about it all, sure it will be fine.
Hope your knee gets better soon, I have been hobbling around too as I broke the bone in my little toe, absolute agony and the bruise was so bad it completely covered the whole of my foot, my foot was so swollen that I couldnt get boots or shoes on for 4 days, on the mend now though but the consultant said it could take 8 weeks as a piece of bone has broken completely off saw the xray and it was quite impressive really just floating arounnd next the the bit of bone it should be attatched too.
Well had the assessment now and not sure if I feel better or worse, still stuck in limbo land, the SaLT said that whilst he does have limited understanding in some areas and is very literal, also alot of the phrases he uses she decscribed as learnt, she is not concerned with his speech, which is fine as that is what I have been saying all along, she thinks he definitely has some sensory issues and maybe dyspraxia, he also shows some autistic traits but has alot of traits that arent so I guess we are still not further forward.
Where to next then hayley1? Did they say they will give some follow up care or is it just back to the paediatrician for you? You must be so frustrated. Things are moving along well with us, we got the dla through and she is getting the higher rate for personal care and they will contact us again when she is 3 for the mobility element. I'm exhausted with lifting her and carrying, so much so that my back constantly aches. We have the adaptations people coming from the council soon to assess our home.
hayley1 that does sound very frustrating. Did they speak to the physio regarding her findings? hope you get some more answers soon.
Charlotte I'm glad you got your DLA through. I was quite confident that you would get that element as Lydia does sound very similar to how Paul was at her age and thats the rate we get. It is so hard to get them round the house never mind when you're out and about. How did you get referred to adaptations? was this through occuoational therapy? no one has ever suggested it for us although I know there are a few things we should have done really.
The SaLT did say that he will get an assessment with the paed soon although she is clearly following things up as she has phoned his nursery to get reports from them, I also had a letter through from the early years specialist support teacher, she wants to come and see us nest Tuesday and also go and see him at nursery, she has also said about a portage worker but will explain more about it when she comes out, hopefully by the time we get all these appointments out the way we might have moved forward a bit.
Glad you got your DLA through Charlotte that is great news, I might even try and apply for Isaacs x
Get going with it hayley1, you just never know. It looked scary when I first began filling it out but once you get going with it, it becomes quite easy to do. Just go for it. x
Will do, it just looks so huge and I know I will be really annoyed if we get turned down. Got the report from the SaLT yesterday and despite her saying that she had no concerns about his speech or understanding she has put a diagnosis of possible higher level pragmatic language difficulties. I dont even know what that means and I cant get hold of her to ask. Why do they say one thing and mean something else, he is seeing an early years specialist support teacher next week so maybe we will get somewhere with her.
Hiya girls, hope you're all ok. Hayley1 have you managed to find out what she meant yet? hope so.
We had appt in Alder Hey yesterday no results as they've had a bit of a delay with a referral to a Newcastle hospital but anyway now they have asked them to check Paul's bloods and muscle round a specific group of genes now to see if they get anywhere. They are the genes that affect the chemical messages that go from the nerve ending to the muscle. The conditions they affect are lablled Congenital Myesthenia which is a group of very rare conditions. I've heard of Myesthenia Gravis (but they said this is the more common version and they don't think thats us)
I feel better that they are looking at a more specific group of conditions but still frustrated that its taken so long but hey there's nothing I can do about that. The scary thing is that these sort of conditions can vary so much between person to person which does frighten me a bit becasue we are thinking of having another baby really soon. I know I can't worry about this too much though, just got to get on with everything.
Charlotte, have you seen the adaptations team yet? what have they suggested for you? I am getting a referral for myself now to see if there is anything I can get to help round here, the stairs are a huge issue for me at the moment and the bath too, hopefully I will get somewhere with that soon.
Hi Chriss, glad the hospital seem to be looking for something specific now, it must be such a relief, although I know what you mean about the frustration of it taking so much time. Patience is not one of my strong points
I managed to find out that what the speech therapist meant is that there is not a concern with his developing launguage but more to do with his understanding of it and especially peoples feeling and body language, basically it is the speech element of autistic spectrum disorder but obviously she felt no need to explain that to me. We had the early years speciallist support teacher out yesterday, she was very good, she played with him and says he has a lot of understanding but physically he was quite far behind, socially it was difficult for her to tell but she is going to see him at his nursery soon and speak to his key worker about their concerns so we may start to get somewhere x
Ahh that sounds quite positive. They are very good I think once they have time to see how our children play and interact. It all just takes time and I agree it tests your patience.
Hi all, sorry not been on for a few days, internet been down. I am still waiting for adaptations team to come but we've had a letter saying we're on yet another waiting list! The report came back from the neuromuscular team and they have recommended I go for dla and get involvement for me in the hope it will speed things up. Not sure how I feel about that. Taking Liddy to occupational therapist tomorrow so we'll see how that goes.
Hi Charlotte, do you mean adult DLA for you? I am filling in a form for myself next week, getting some help though as nervous about it. I'm also having OT referral regards stair lift or hand rails and grab rails etc. I'm not sure what I'll get but am hoping to get something for mobility I do really struggle.
Yes it has been suggested that I complete adult dla but I'm really not sure my difficulties are severe enough. The issues I have are manageable day to day, the difficulties begin when I have to help Lydia about the house and out doors. My problem now is that I fell out of the front door on Monday and have fractured my elbow. I am now completely unable to help Lydia at all and am feeling extremely low today.
Just a quick update ladies, I submitted Isaacs dla form on 17 Feb and on Weds I got a letter which awards him middle rate care I can't believe it came through so quickly, I filled the form in online and sent his Physio report, nursery report and SaLT report and obviously they decided he needs it. It is going to be such a help especially with his shoes etc.
How are you 2, any closer with diagnosis yet? Isaac has an assessment with the paed on 17 March and I have had several arguments this week with the early years support teacher becasue basically she will not listen to my concerns or the nursery concerns, I think when I see the paed I am going to complain about her as she has been so rude.
Still I am in a happy mood about the dla so I will not let her change that. xxx
Charlotte, I think we are in a very similar position, I fell in January damaging my cartillage and ligament in my knee and it's still not healed after 8 weeks and has been a real struggle on top of everything else. I've got someone coming here on Monday to help me fill in a form. I'm not sure how it will go but I've put it off for so long now I think its time I tried. I have a friend who can take care of herself most of the time so she gets low rate personal care, but she really struggles getting out and about, taking little girl to nursery etc so she gets high rate mobility.
I think the personal care side of things is ok for us as we do less than most in order to get by (i do anyway) it's all to do with conserving energy, and because we are used to it we don't think of ourselves as struggling, but we do struggle. put me next to my sister and then you see the difference I'm sure you're the same. Just go for it and don't feel as though you're trying to dupe anyone, I've felt like that for a long time but now I'm realising that the only reason I feel that was is because I can have a run of really good days where I can get out and about, but then I have the bad ones where I can hardly manage to get round the house let alone outside.
Hayley1 I'm really glad you got the middle rate, I knew you would get something, again it's easy for us to just get on with things day to day without realising how much more effort and support we are putting in for our kids. It makes such a difference having that little extra money, I spend a fortune on petrol running back and forth from all the blooming appointments we have.
We are still having extensive tests, I missed one the other day for myself I was gutted, I had built myself up for it and organised everything to get there for 11:45 and that morning realised it said 9am!!!!!!!!! couldn't believe I made a mistake, first one but I suppose it was only a matter of time we have so many. Anyway I rearranged and have another appt in a couple of weeks but seeing Neuro before then and have loads to tell her as have a few really bad months.
Paul is doing ok, had a bad virus last weekend but has recovered ok, he's been having his 2 hour sleep in the day again (although he's been in bed for an hour now and still hasn't gone off) he gets so tired and falls over or his posture will be awful I know then he's getting too tired to be up. I think its gonna be years before we get a definative diagnosis, it stresses me out.
Replies
Chriss, we all get like that at times, me especially most of the time I am quite upbeat about it but there are times when I just feel like I am banging my head against a brick wall, you will get there, and we are always here for you to have a rant about when you feel low, you are not alone, take care xxxxxxxxx
next appt (apart from ENT) is Neurology, hoping to see whether they have contacted another hospital to see if they'll test for more rare conditions.
Hope your knee gets better soon, I have been hobbling around too as I broke the bone in my little toe, absolute agony and the bruise was so bad it completely covered the whole of my foot, my foot was so swollen that I couldnt get boots or shoes on for 4 days, on the mend now though but the consultant said it could take 8 weeks as a piece of bone has broken completely off
Will update after Isaacs appointment xxxx
Hope the assessment goes well, the good thing is hell start to get the right sort of help.
speak to you soon x x x
Charlotte I'm glad you got your DLA through. I was quite confident that you would get that element as Lydia does sound very similar to how Paul was at her age and thats the rate we get. It is so hard to get them round the house never mind when you're out and about. How did you get referred to adaptations? was this through occuoational therapy? no one has ever suggested it for us although I know there are a few things we should have done really.
Glad you got your DLA through Charlotte that is great news, I might even try and apply for Isaacs x
We had appt in Alder Hey yesterday no results as they've had a bit of a delay with a referral to a Newcastle hospital but anyway now they have asked them to check Paul's bloods and muscle round a specific group of genes now to see if they get anywhere. They are the genes that affect the chemical messages that go from the nerve ending to the muscle. The conditions they affect are lablled Congenital Myesthenia which is a group of very rare conditions. I've heard of Myesthenia Gravis (but they said this is the more common version and they don't think thats us)
I feel better that they are looking at a more specific group of conditions but still frustrated that its taken so long but hey there's nothing I can do about that. The scary thing is that these sort of conditions can vary so much between person to person which does frighten me a bit becasue we are thinking of having another baby really soon. I know I can't worry about this too much though, just got to get on with everything.
Charlotte, have you seen the adaptations team yet? what have they suggested for you? I am getting a referral for myself now to see if there is anything I can get to help round here, the stairs are a huge issue for me at the moment and the bath too, hopefully I will get somewhere with that soon.
I managed to find out that what the speech therapist meant is that there is not a concern with his developing launguage but more to do with his understanding of it and especially peoples feeling and body language, basically it is the speech element of autistic spectrum disorder but obviously she felt no need to explain that to me. We had the early years speciallist support teacher out yesterday, she was very good, she played with him and says he has a lot of understanding but physically he was quite far behind, socially it was difficult for her to tell but she is going to see him at his nursery soon and speak to his key worker about their concerns so we may start to get somewhere x
How are you 2, any closer with diagnosis yet? Isaac has an assessment with the paed on 17 March and I have had several arguments this week with the early years support teacher becasue basically she will not listen to my concerns or the nursery concerns, I think when I see the paed I am going to complain about her as she has been so rude.
Still I am in a happy mood about the dla so I will not let her change that. xxx
I think the personal care side of things is ok for us as we do less than most in order to get by (i do anyway) it's all to do with conserving energy, and because we are used to it we don't think of ourselves as struggling, but we do struggle. put me next to my sister and then you see the difference I'm sure you're the same. Just go for it and don't feel as though you're trying to dupe anyone, I've felt like that for a long time but now I'm realising that the only reason I feel that was is because I can have a run of really good days where I can get out and about, but then I have the bad ones where I can hardly manage to get round the house let alone outside.
Hayley1 I'm really glad you got the middle rate, I knew you would get something, again it's easy for us to just get on with things day to day without realising how much more effort and support we are putting in for our kids. It makes such a difference having that little extra money, I spend a fortune on petrol running back and forth from all the blooming appointments we have.
We are still having extensive tests, I missed one the other day for myself I was gutted, I had built myself up for it and organised everything to get there for 11:45 and that morning realised it said 9am!!!!!!!!! couldn't believe I made a mistake, first one but I suppose it was only a matter of time we have so many. Anyway I rearranged and have another appt in a couple of weeks but seeing Neuro before then and have loads to tell her as have a few really bad months.
Paul is doing ok, had a bad virus last weekend but has recovered ok, he's been having his 2 hour sleep in the day again (although he's been in bed for an hour now and still hasn't gone off) he gets so tired and falls over or his posture will be awful I know then he's getting too tired to be up. I think its gonna be years before we get a definative diagnosis, it stresses me out.