Forum Replies Created
July 16, 2012 at 2:42 pm #85724Re: Help needed for a TA at mainstream school
One of the OT’s called a moving and handling co-ordinator person in to see my son at school to assess how the staff were handling him and to make sure they were all safe – i don’t know if you would have access to that maybe through an OT or Physio?
I also just asked our physio to see our son more and was told that is not the done thing! She is going to show the staff how to do his stretches and then just review – very frustrating!
The thing i find is that the medical people are risk assessment mad and don’t always think past what they have access to. The parents should hopefully be your best bet – if they are well informed. And joint meetings with OT/Physio/Parents etc to talk through the best ways of management can be helpful.
I was basically told that my son was getting too heavy for the staff to lift him onto his chair and i knew they were thinking of hoists. But we took a ramp in and he shuffled up backwards onto the chair himself. Problem solved. It just means thinking outside the box sometimes.
Good luck xJuly 16, 2012 at 2:33 pm #84282Re: PEG feeding tube..
To be honest i can’t remember the exact time frame – it always feels longer than it is.
Probably a good few weeks before it didn’t hurt as much but my son was very aware of it and very sensitive to it.
He would often be saying ‘Ouch’ before we even did anything so sometimes it seemed more the fear of it rather than actual pain. It was a few months before he slept on his tummy again or tried getting downstairs/off chairs etc which he always did on his belly. It has been 8 months now and he has been fine for ages.
If you have concerns though i would book back in with the people who fitted it. And keep pushing til they see you.
We had his tube changed for a button in february (3 months later) and by then all was fine and they checked him out when they did the switch over.
Good luck – it is a much more traumatic time than anyone is prepared for!June 22, 2012 at 6:26 pm #85484Re: Night ventilation
Thanks mel – ruth has just forwarded me your details so i will e-mail you if that is alright.
Still sporadically bursting into tears when talking about it so you might not get much sense out of me on the phone!June 21, 2012 at 1:47 pm #84320Re: HATE Duchenne…
reading all of your posts has made me bubble! Not that crying is unusual
for me really. 3 years down the line and it still doesn’t seem to feel any better.
I guess knowing there are other people feeling the same who actually do understand
(rather than just saying they do) is some sort of comfort – at least i know i am not going mad.
It would be good to have a brain switch to just have some peace every now and again.
I wouldn’t change things for me – my son is my world – but i would change things for him.
If i could.June 21, 2012 at 1:27 pm #84280Re: PEG feeding tube..
I don’t know anything about your son – mine is 4 and had a peg fitted last november.
It took days before he would sit up as he has lumbar lordosis and sticking out his belly made it hurt
more. It was just a slow and steady thing and after a while it doesn’t hurt anymore. It took a lot longer than
we thought it would though and the length of time off his feet has had a real impat on him.
I hope your son is doing better xJune 21, 2012 at 1:02 pm #85722Re: Help needed for a TA at mainstream school
I think it fantastic that as a TA you are on here looking for advice. I hope my son’s new TA will be as good as you!
Anyway, as for the boy you look after at school – you should really be taking the lead from the Physio. They should be coming and going over all the moving and handling needs with you and arranging for manual handling training if needs be.
Our physio went into school a few times to go over things with the staff and will do so again in september when he starts reception.
You are obviously very dedicated but this really isn’t your responsibility. i would keep pushing until they agree to come in – that way you are protecting yourself aswell.
Good luck!May 18, 2012 at 6:25 pm #85478Re: Night ventilation
Thank you – i have looked at the previous posts about ventilation and it has helped.
I was hoping there was someone out there in my position with a young child who has gone through it,
He is just so little and trying to explain it all will be pretty hard.
xMay 17, 2012 at 10:27 am #84813Re: Sorry, long, confused post!
My son is 4 and we are just about to get a power chair for him. It was a big decision and adjustment for us but he loved the trial one and can’t wait to have his own. We have the car issue too – the chair weighs about 10 stone so i can’t lift it and we have a lease purchase car. I’m going to ask the mobility people how exactly they fit the hoist to the inside of the boot and then will ask the car people if they will allow me to do it. If not we are going to have to look for other solutions. I think we will leave it at school during the week though and bring it home on weekends.
I know what you mean about the power chair being ‘more disabled’ looking but at the end of the day if it helps then it just has to be done. It is hard though – sometimes whatever options are given seem to just be so medical and there must be other options first. My son needs a school chair with arms and a footrest so they want to put him in this big contraption that looks hideous. Why can’t i just get a chair with arms (weirdly notoriously hard to find) and get a step for his feet??
Good luck – i will let you know how i get on with the car thing.May 17, 2012 at 10:12 am #84912Re: Im scared of my future..
I’m scared every day. My son has Md and i don’t know how i manage to hold it together some days.
We are lucky and have great support from doctors, consultants, dieticians, physios, health visitors
(and there are nurse counsellors through the muscle team if we need them). There should be someone
like these people who can help you find the information you need. A social worker would be able to help
around benefits etc but i would start with your gp if you don’t have any other professionals involved yet.
I can’t imagine how you are feeling – but talk md is great for sharing with other people who are going through
the same thing as you and for making you feel supported.
Good luck – i hope you find what you needMay 17, 2012 at 10:05 am #79358Re: drink supplements on prescription
My son is 4 and has limb girdle Md – he has been getting build up drinks for a few years, on prescription from the dietician.
But i would say your son’s consultant or dietician (if he has one) should be able to write to his gp requesting the drinks again.
His old notes from his old gp should have transferred to his new doctor though so i can’t see why he would cancel them in the first place! Good luckDecember 4, 2011 at 10:21 pm #82925Re: Nutritional drink/shake
Hi Claire, sorry for late response! My son has been in hospital getting a peg fitted so we can feed him through the tube in his tummy to help him put on weight. I think the paediasure plus is mostly just for kids. We have other stuff too – calogen, duocal and maxijul which are all powder/liquids that we can add to drinks and soft foods to add extra calories. They really help us and take the stress away from our son not eating well. All of these we get from the dietician (and for free due to my son’s age) but I can only imagine how much it would all cost otherwise! It’s good to hear that you are doing better and eating well again. XDecember 4, 2011 at 9:53 pm #82532Re: Care Packages
My son is 3 and has Md. I was an OT before I had my kids ( but not in paeds) so luckily I feel a bit more in the loop than maybe a lot of parents do! We don’t see an OT yet but I’m sure at some point in the near future – whether for equipment at home or input at school, we will. I would like to think that we would always be in some kind of contact once that happens as i’m sure as he grows, things will keep changing so he would need to be monitored. It always seems that no professional we meet is any kind of specialist in MD as the conditions are so rare – and as a parent it can feel a little like you are just left to your own devices. Not that it should be your role necessarily to combat that. Just thought it may help to see the other side a bit.
AmyNovember 24, 2011 at 9:20 pm #82924Re: Nutritional drink/shake
My son is 3 and has md -I’m guessing you are slightly older than that! So this might not help but anyway. We have seen a dietician, referred by one of the many doctors we see and she is very helpful. We have done meal diaries etc and we get paediasure plus, the highest calorie drink available to us on prescription. I hate to think how much it would cost otherwise! Eating tires our son out so sometimes all he will have is the milk so it is essential for him. If you can get referred I think it would help. I think now that all of that is pretty irrelevant to you but good luck anyway!
AmyNovember 7, 2011 at 10:36 pm #82229Re: Newcastle Muscle Centre
I’m sorry you are having a tough time and I hope your appointment goes ok.
Our son has a form of MD and was diagnosed at the Newcastle muscle centre (at the centre for life?) 2 years ago.
I don’t know the doctor you mentioned but we have seen most of them and through the whole diagnosis process they were fantastic. We were seen pretty quickly but I think that was luck more than anything! We did all the initial information thing about family history and stuff and then had blood tests taken from all of us. We got a Diagnosis a few days before a muscle biopsy. It was pretty hot in the waiting room and their time keeping wasn’t great but there is a Lot of them and diagnosis seems to be their thing so you are in good hands.
Hope that helps a bit, let me know if there is anything else you want to know that might help you.
AmyNovember 7, 2011 at 9:27 pm #82826Re: Spinal Lordosis – help!
Thanks for your responses – maybe I am unrealistic in my expectations of what can be done! My son has only been diagnosed 2 and a half years and we see pretty much everyone. paediatrician, physio, speech therapist, dietician, cardiologist, orthopaedic surgeon, gastrointestinal, respiratory, podiatrist, genetic specialist. And I’m sure the list will just get Longer!
Anyway, the physio hasn’t met anyone quite like him but she is great and we do all the stretches. Maybe I still can’t get my head round not being able to do anything, but I just want to feel like we are doing what we can and not just letting things get worse. Thanks for letting me rant!October 31, 2011 at 7:48 pm #82783Re: Has anyone had a child have a PEG fitted?
They are aware and are saying all the right things and i’ll be there making sure they know what they are doing! But i’m still worried sick. I guess that is just what comes with being a mum. I’ve never met anyone with LGMD yet so it is nice to talk to you. Will keep you updated.