I think that meeting altogether is definitely the way forward, it's what we do in school and works well. There is no point having ten separate appointments as you seem to bounce ideas around which conflict other trains of thought, it is best you all come together and thrash it out until you reach a common outcome.
I have to say, I have given up on the potty training as it wasn't working for us at all, she doesn't even know that she needs to wee. Completely pointless and it was really upsetting her. It seems it is just something else we will come to later. Lydia will be 2.5 years at the end of November; will the appointment for a review be sent to me or do I have to make one?
I am also going to have to phone the team at Leeds as we have heard nothing for months about the results of the DNA etc. I just feel I want to know what is going on. Also need to contact Lydia's paediatrician as her spine seems to be curving even more and she can no longer stand up straight.
Good luck with getting everyone together, we manage a group session at nursery but the consultants don't go, they're too busy its just nursery, physio, speech and language and occupational therapy.
It is frustrating though not knowing exactly what the condition is, just saw a case on the news, the baby that is on life support and parents have gone to court to see whether his life support should be turned off, that's one of the conditions they're testing us for conjenital myesthenia gravis. It's got a varying affect for each case and obviously if that's what we've got it's a milder case.
Paul's doing ok at the moment, he's a bit weaker the last few weeks and isn't eating much at all, the other day he has toast and a jaffa cake all day i was beside myself as he's so thin. if it stays like this any longer i think i'll have to see the gp to see if there is any nutrition suppliment or drink as I'm quite worried now. he's having plenty to drink but even so he's hardly eating. His reflexes seem slow at the moment too, he's not chewing great and is tripping more than normal. we've got the winter coming so think he's just run down.
Hayley1 - can you telephone the paed ad leave a message with his secretary to try and get them to refer you for an assessment on the basis of what the physio etc have said regarding autism etc? maybe the HV can get your gp to refer.
tobyt200 I think you're right about the potty training, I've given up, I'm trying to get him to think doing a poo is good as he gets upset if i ask him if he's done one he just says no no no and gets really upset so don't know whats going on there.
Hi ladies, Charlotte you are completely doing the right thing with the potty training, I gave up with Isaac and really don't know when I am going to start again, he was so upset by it that it really put me off trying, you should get an appointment for your 2 1/2 year check but I chased mine up as I just want it done before he goes back to the paediatrician in December. How long is it since you had the dna tests, someone told me it takes 3 months for the genetic/chromosome tests to come back but I would phone and chase them anyway, sometimes I think the quieter you are about things the more likely they are to forget about you.
Chriss, sorry Paul isnt eating so well at the moment, thankfully that is one thing I dont have to worry about with Isaac as he is generally a good eater although he does go through phases of not eating, but becuae he is quite big for his age it isnt a worry. I am seeing the paed in 4 weeks anyway so I am not going to ring at the moment, if his appointment had been a few months away then I would have phoned to see him sooner but as its quite near theres not much point.
I am not looking forward to his 2 1/2 year check, I thought I was going to be ok with it but now it is looming I feel a bit low about it as I know they are going to pick up things, he doesnt hold a pencil correctly, he has no preference between left and right hand, he cannot draw circles lines etc and he can't build a tower of blocks or do simple puzzles which are all things they look for at the check, part of me hopes he is having a good day and he does at least co-operate a bit but the other half of me hopes he has a really bad day and then they can see what he is like.
He is at the hospital seeing the plastic surgeon and ent on Thursday for his ear, he has something called a pre auricular sinus which will need removing, it's just a case of whether they do it now or leave it till he's older, I will update you on how both the appointments go
Hi Just a quick update, Isaac's 2 1/2 year check went well, although he didnt do the puzzle or thread the beads onto the string and he wouldnt copy the drawing of the circle, the hv said that she couldnt see any major cause for concern, I am a bit confused as at his age they are supposed to be doing all that but she wasnt at all concerned but she did say she would ring again in a few weeks and review him ? surely if there is no cause for concern she doesnt need to. His appointment with the plastic surgeon was great, it was a bit fo a nightmare to start as he was running over 1 1/2 hours late and our hospital have removed all the toys because of swine flu, however the sugeon says that as the sinus is draining on its own and not becoming infected there is no need at this stage to remove it and unless it does get infected there will never be a need, although he did give me the option of having it done, I decided not to, there is no point him having to have a general anaesthetic and a surgical proceedure if it is not necessary, so that was great too all in all a good week for us )
Oh that sounds good Hayley1 I don't think I would do anything unless it was becoming a problem with infection.
maybe the HV sees kids who aren't interested rather than iunable and is thinking along those lines, maybe stress to her if she rings back what the physio said,
good luck with your next appt anyway in Dec
Paul seems to have picked up a bit this week, he's eating a bit more and I'm trying not to worry about it all that much either. His speech has come on lovely this week too he's attempting loads of words it's really cute.
we're not back at Neurologist until February but we have physio twice weekly and every 4 weeks or so at home, speech and language are due in Dec and Ear nose and throat regarding his hearing and possibly his high arched palate, so we have a busy time really. getting measured for new boots too next week I keep getting the timing wrong, had to buy him some little normal boots as he's at the end of his Piedros, must try harder next time to get an appt before he grows out of them, naughty mummy
Really glad Paul has picked up this week, I knw what you mean about the hv, she did say he was at least trying, it was just that he didnt manage it so I guess that means she is not concerned so much about the social side, more about the physical side, I am over the moon he doesnt need the op on his ear I was so convinced that he would after what had been said earlier I could have kissed the consultant when he said there was no need.
Definitely get the timing of those appointments right shoes cost a fortune, our orthotics dept have a waiting list of about 6 weeks, its so difficult to work out when they are having a growth spurt how long they will last. Great about his speech too, how old is Paul now? Isaacs speech came on realy well all of a sudden just after his 2nd birthday, it was as though something had clicked.
I know what you mean about appointments, just had one though and should get the boots next week but apparently we are only able to get a pair every 3 months now anyway hadn't realised that. I managed to get a lovely pair of boots until then from TKMax they are a size 22 which you can't actually get in uk sizes.
Paul will be 2 at the end of the months and like Isaac he just all of a sudden started to talk loads, he's even more chatty now its fab, we have to repeat everything he sais or he gets really upset, and if I don't understand he tries even harder to let me know using signs or even showing me, soooooo cute.
got next speech and language visit on 7th so I'm really looking forward to it, hoping he doesn't do his usual quiet act when she calls though haha
Ahh, he sounds like hes doing brilliantly, Isaac made a major step forward today, he actually managed to come downstairs without me holding him, it was backwards and he was on all fours but he still did it, I nearly cried and I was shouting for hubby to come and see, isnt it amazing how every little achievement is just so wonderful to see. Got Isaacs paed appointment on 1 Dec and hoping to get some sort of answers, will keep you posted. xx
Oh that's amazing, that's probably the way I'll teach Paul to come downstairs, it is much safer for them. at the moment we bump down on our bottom but i have to help him down.
yes good luck with the appt, I'd be pushig for a neurology appt now as it seems that the Paed has exausted all options/tests available to him now
Lydia has started to go down the steps on her front and slides down, she finds it hilarious! Going up is getting better, she is using the handrail and stepping up. The only problem I have is when she is asleep I find it impossible to carry her up with my muscular strength being as it is. Liddy has an appointment with the paediatrician on 23rd December and gets her new boots on Thursday. We're still waiting for the DNA to come back from London for the team in Leeds but they say we'll be called for an appointment in Jan sometime. I finally downloaded the DLA form and it's HUGE, going to have a look at it this afternoon and give it a go. Wish me luck!
yes I'm much the same when Paul is asleep actually even when he is awake if I'm having a bad day I can't carry him up, you should have seem me today trying to get him and my 1 year old Niece up my sisters stairs good Lord it was amusing. He's not well at the moment had a high temp for 2 days so he's really weak too so I've done my back in lifting him.
don't be put off by the DLA form the kids one is about 42 pages but a lot of that is information etc hope you get it filled in ok
Hi Charlotte, she sounds alot like Isaac he climbes up the stairs using the handrail or crawls, depending on whether he is having a good or bad day, as for coming downstairs he has done it a couple of times now but again if he is having a bad day it seems totally beyond him and he cant do it. Know exactly what you mean about lifting them up, Isaac weighs just over 2 1/2 stone now and he is very tall too so it is really difficult, he is also starting to look a bit odd sitting in his pushchair because he is so big bless him. x
Liddy has her new boots, she loves them! They're rather more pink than they looked in the catalogue though!! I thought we were going for dusky pink but no they're HOT pink!!! Proper girly boots!
How cute, my friends little girl has hot pink piedro boots, they are so sweet but she says she looks like a tweenie in them
Isaac is back at the paed on Tuesday and when I picked him up from nursery yesterday the manager of his room (he has just moved from the 18 months - 2 1/2 year room) said he had a really bad day, she said he wouldnt even walk up the stairs holding her hand let alone back down them again when it was time to go outside, she said that he had been 'off' all morning, but after his lunch he just went downhill, she said she has never seen anything like it, apparantly he just stood by the wall staring into space, even when they tried to talk to him he was just looking through them, she said he would not interact with any of the other children it was almost as though he was in a trance, he was like it for a good 2 hours, she said it frightened her because it was as if his body was there but he was not. I am gutted now becuase although I know he does that I thought maybe I was imagining it or thinking he was worse than he actually is. She said in all her years working with children including those with special needs and autistic spectrum, she has never seen a child just 'switch off' like he did. I was trying so hard not to worry about Tuesday and be positive about it by having all my worries and questions written down ready but now I just want to cry, my poor baby
Perhaps he was just exhausted and switched off as a result. Try not to worry (impossible I know) and wait to see what the paediatrician says. Is it anything to do with epilepsy? Children with epilepsy have 'absences' but I've never worked with a child that has had one for that long. I just don't know but let me know as soon as you hear, I'm sending you a cyberhug.
Oh Hayley1 you must have been worried, I agree with tobyt2000 though, maybe he was just exausted, I know Paul has times like this and you can't get anything out of him, and I also did this too when I was little. Also if he has just moved rooms this is quite a big step for him. Any baby is better with routine, and particularly if he is in the spectrum for autism or something like that, this could maybe have affected him more as it's quite a big change in routine. Also even though the nursery leader has obviously worked with special needs children, we're all different, just because they thought it was something they've never seen before, doesn't mean its really bad, just different. I have to make sure Paul has play time in the day where he lies down to play or he can get completely exausted.
We are due to have an assessment at home with the Occupational therapist to see how well Paul can go upstairs (which isn't very well at all) but as he will be moving upstairs in nursery in February/March he will have to be able to use the stairs, but they go into nursery too and take the staff through it all etc, has the physio mentioned this sort of help for Isaac in nursery or school? the difference it can make if he isn't in the right hight chair etc can have a very big affect on a child with muscle problems or any child for that matter.
just mention it to the Paed and I'm sorry to bang on about it but I really would see what they say about Neurology, there are sooooo many muscle conditions that have similar traits to the things that the Paed has already tested for and a neurologist will just be coming from a much better starting point. lots and lots of the things you tell us about Isaac and your daughter and even yourself are similar to mine and Paul's situation and I just want you to get the best information and care that you can get.
I hope you have a positive appointment anyway I'm sure you'll let us know how you get on
by the way just tell me to shut it if I go on I can't help it I just feel like I'm living it with you
Ah thanks ladies, I was just so worried when she said about it, I am definitely going to ask about a neurology referal as he has had these 'absences' before but never for quite so long, the question of epilepsy has crossed my mind, I guess its just something I didnt want to think about especially as Phil has epilepsy which is caused by his tumours, am really hoping that is not the case for him.
I would never tell you to shut up, you are a massive support, when I speak to you ladies it makes me realise that I am not going mad.
Hi, Isaac had his appointment with the paed today and at last I feel like we are getting somewhere, he is discharging him from the hospital care and referring him to the community care team (he will still see the same paed as he is the community paed), he will see a speech and language therapist which is odd as that is the one area of his development I am not concerned with, but he says it is so that they can get the whole picture, he also says that when he sees him as part of his community team then he will have a lot longer to go through all my concerns as obviously hospital appointments are quite short. He thinks that Isaac is displaying some autistic traits but also dyspraxia and sensory integration disorder are things he is also going to look into, also he says with the community team he will get the support he needs and I will also get the support I need as there are times when I feel like I am going slightly mad I feel like a huge weight has been lifted off my mind and finally we might start getting some answers, he is also going to refer him for an eeg as although he thinks it is unlikely that his 'absences' are caused by epilepsy he wants to be 100% sure.
That must be such a relief to you, at least they're taking a holistic view and exploring all the areas of Isaac's needs. Hope you're okay and that you can see a light at the end of the tunnel. Keep us posted.
Completely unrelated but I have FINALLY managed to fill out the DDA form so wish it luck and we'll see how we get on.
Ooh good luck with that Charlotte, you are one step ahead of me with that one. I am sooo relieved that finally things seem to be moving forward and his paed is lovely which helps, he has assured me that I needn't worry about Isaac starting pre school or school as he will make sure that he has the help and support he needs in place by then. Will keep you posted. Let us know how you get on with DLA. xx
Replies
I have to say, I have given up on the potty training as it wasn't working for us at all, she doesn't even know that she needs to wee. Completely pointless and it was really upsetting her. It seems it is just something else we will come to later. Lydia will be 2.5 years at the end of November; will the appointment for a review be sent to me or do I have to make one?
I am also going to have to phone the team at Leeds as we have heard nothing for months about the results of the DNA etc. I just feel I want to know what is going on. Also need to contact Lydia's paediatrician as her spine seems to be curving even more and she can no longer stand up straight.
Hope you are all well.
Charlotte
It is frustrating though not knowing exactly what the condition is, just saw a case on the news, the baby that is on life support and parents have gone to court to see whether his life support should be turned off, that's one of the conditions they're testing us for conjenital myesthenia gravis. It's got a varying affect for each case and obviously if that's what we've got it's a milder case.
Paul's doing ok at the moment, he's a bit weaker the last few weeks and isn't eating much at all, the other day he has toast and a jaffa cake all day i was beside myself as he's so thin. if it stays like this any longer i think i'll have to see the gp to see if there is any nutrition suppliment or drink as I'm quite worried now. he's having plenty to drink but even so he's hardly eating. His reflexes seem slow at the moment too, he's not chewing great and is tripping more than normal. we've got the winter coming so think he's just run down.
Hayley1 - can you telephone the paed ad leave a message with his secretary to try and get them to refer you for an assessment on the basis of what the physio etc have said regarding autism etc? maybe the HV can get your gp to refer.
tobyt200 I think you're right about the potty training, I've given up, I'm trying to get him to think doing a poo is good as he gets upset if i ask him if he's done one he just says no no no and gets really upset so don't know whats going on there.
Chriss, sorry Paul isnt eating so well at the moment, thankfully that is one thing I dont have to worry about with Isaac as he is generally a good eater although he does go through phases of not eating, but becuae he is quite big for his age it isnt a worry. I am seeing the paed in 4 weeks anyway so I am not going to ring at the moment, if his appointment had been a few months away then I would have phoned to see him sooner but as its quite near theres not much point.
I am not looking forward to his 2 1/2 year check, I thought I was going to be ok with it but now it is looming I feel a bit low about it as I know they are going to pick up things, he doesnt hold a pencil correctly, he has no preference between left and right hand, he cannot draw circles lines etc and he can't build a tower of blocks or do simple puzzles which are all things they look for at the check, part of me hopes he is having a good day and he does at least co-operate a bit but the other half of me hopes he has a really bad day and then they can see what he is like.
He is at the hospital seeing the plastic surgeon and ent on Thursday for his ear, he has something called a pre auricular sinus which will need removing, it's just a case of whether they do it now or leave it till he's older, I will update you on how both the appointments go
Take care xxxx
maybe the HV sees kids who aren't interested rather than iunable and is thinking along those lines, maybe stress to her if she rings back what the physio said,
good luck with your next appt anyway in Dec
Paul seems to have picked up a bit this week, he's eating a bit more and I'm trying not to worry about it all that much either. His speech has come on lovely this week too he's attempting loads of words it's really cute.
we're not back at Neurologist until February but we have physio twice weekly and every 4 weeks or so at home, speech and language are due in Dec and Ear nose and throat regarding his hearing and possibly his high arched palate, so we have a busy time really. getting measured for new boots too next week I keep getting the timing wrong, had to buy him some little normal boots as he's at the end of his Piedros, must try harder next time to get an appt before he grows out of them, naughty mummy
Definitely get the timing of those appointments right shoes cost a fortune, our orthotics dept have a waiting list of about 6 weeks, its so difficult to work out when they are having a growth spurt how long they will last. Great about his speech too, how old is Paul now? Isaacs speech came on realy well all of a sudden just after his 2nd birthday, it was as though something had clicked.
Paul will be 2 at the end of the months and like Isaac he just all of a sudden started to talk loads, he's even more chatty now its fab, we have to repeat everything he sais or he gets really upset, and if I don't understand he tries even harder to let me know using signs or even showing me, soooooo cute.
got next speech and language visit on 7th so I'm really looking forward to it, hoping he doesn't do his usual quiet act when she calls though haha
yes good luck with the appt, I'd be pushig for a neurology appt now as it seems that the Paed has exausted all options/tests available to him now
anyway hope it goes well, speak soon
Charlotte
don't be put off by the DLA form the kids one is about 42 pages but a lot of that is information etc hope you get it filled in ok
Isaac is back at the paed on Tuesday and when I picked him up from nursery yesterday the manager of his room (he has just moved from the 18 months - 2 1/2 year room) said he had a really bad day, she said he wouldnt even walk up the stairs holding her hand let alone back down them again when it was time to go outside, she said that he had been 'off' all morning, but after his lunch he just went downhill, she said she has never seen anything like it, apparantly he just stood by the wall staring into space, even when they tried to talk to him he was just looking through them, she said he would not interact with any of the other children it was almost as though he was in a trance, he was like it for a good 2 hours, she said it frightened her because it was as if his body was there but he was not. I am gutted now becuase although I know he does that I thought maybe I was imagining it or thinking he was worse than he actually is. She said in all her years working with children including those with special needs and autistic spectrum, she has never seen a child just 'switch off' like he did. I was trying so hard not to worry about Tuesday and be positive about it by having all my worries and questions written down ready but now I just want to cry, my poor baby
Charlotte
We are due to have an assessment at home with the Occupational therapist to see how well Paul can go upstairs (which isn't very well at all) but as he will be moving upstairs in nursery in February/March he will have to be able to use the stairs, but they go into nursery too and take the staff through it all etc, has the physio mentioned this sort of help for Isaac in nursery or school? the difference it can make if he isn't in the right hight chair etc can have a very big affect on a child with muscle problems or any child for that matter.
just mention it to the Paed and I'm sorry to bang on about it but I really would see what they say about Neurology, there are sooooo many muscle conditions that have similar traits to the things that the Paed has already tested for and a neurologist will just be coming from a much better starting point. lots and lots of the things you tell us about Isaac and your daughter and even yourself are similar to mine and Paul's situation and I just want you to get the best information and care that you can get.
I hope you have a positive appointment anyway I'm sure you'll let us know how you get on
by the way just tell me to shut it if I go on I can't help it I just feel like I'm living it with you
take care x x x
I would never tell you to shut up, you are a massive support, when I speak to you ladies it makes me realise that I am not going mad.
Will keep you posted xxxx
Completely unrelated but I have FINALLY managed to fill out the DDA form so wish it luck and we'll see how we get on.
Charlotte