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newly diagnosed type 1 |
Hi all, our son aged 9 weeks has just been diagnosed with severe type 1 sma.
Obviously we are distraught, and we both live in fear as to what the future holds for our special boy.
My question is.. we have been waiting for a physio to visit us for 3 weeks now but because of a problem in admin we are stuck in the system!!!! ARGHH!!
Can anybody recomend any movements we can do with him..or can offer any advise on what maybe good things for us to do with/for him to make his and our lives more bareable?
Many thanks in advance for this great website. We have millions of questions, which im hoping you good people here can help us answer.
Dean |
| Posted: Thu Oct 16, 2008 6:50 pm |
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Re: newly diagnosed type 1 |
Firstly, I am so sorry to hear your news. It is now four years since we were in your position, but I still know how totally devasted you must be. We had the same delay and bureaucracy to content with, waiting three months to see a dietitian.
In terms of physio, we were shown various leg exercises to do: basically moving the hip joints in and out, and doing sort of cycle movements. Anything really to keep the flexibility. I am not sure I can describe chest physio - but we did not need that until much later. We also found swimming was very good, and our daughter Amy loved that.
Good luck. |
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Re: newly diagnosed type 1 |
I am so sorry to hear of your recent diagnosis, i have now lost 2 children to type 1 the most recent being just 2 months ago.
although I fully understand that the shock of the diagnosis is still setting in but the speed in which things get sorted out is hugely important with this condition, our first son died at 7 months old but with our second he died at 11 months just 2 weeks before his first birthday.
the most important thing is chest physio, and possibly an Nasogastric tube, these are because these babies have a weak jaw causing a weak swallow reflex, please don't worry too much but it may be worth your while getting on the phone and pushing the consultant. the weak swallow means that some food or secretions won't go into the stomach and it will trickle silently into the lungs, this build up can cause infection hence profilatic antibiotics and chest physio will move the secretions around and help bring them up. chest physio and positioning.
chest physio is a bit difficult to explain but it is done in a similar way to cystic fibrosis using a technique called cupping.
if you lie your son on his side, make sure he is comfy with pillows and blankets and facing away from you, extend his arm (the side facing up) fully going up past his ear keeping hold of it, like he's doing heads, shoulder, knees and toes, cup your spare hand as if holding water and gently pat under his arm on his ribs about 10-20 times with the palm of your hand facing down, the movement should come from your wrist. when you have done this lower and extend the arm that is currently extended like doing the hokey cokey about 10-15 times, this will expand the lungs aiding the movement of any sectretions. repeat these actions for abour 20 mins and then turn over and do the other side. i hope this explains and helps a bit.
our son Toby had a Bi-pap machine too, this helped maintain his carbon dioxide levels and gave him a break from putting so much effort in.
it made him more comfortable although it looks uncomfortable. the first night he wore it he woke up smiling the next morning and was in a good mood all day where before he had been grumpy.
have you had any news on things like open access, community nurse, suction machines and other things?
i hope this helps and if you need any more information i can possibly help, please don't hesitate to ask. |
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| Thu Oct 16, 2008 10:14 pm |
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Re: Re: newly diagnosed type 1 |
THANK YOU THANK YOU THANK YOU WOW...The power of this site has been amazing. Thank you all for your replies so far,it helps so much just knowing that there are people out there who are still willing to give genuine advise. My son had his nasogastric tube fitted 2 days ago, so we are slowly coming to terms with (1) getting used to feeding him through it and (2) and i think most importantly, letting go of something that as parents you both take for granted so much with a baby that small( now hes lay in his chair, whilst before he was in our arms) If that makes sense to anybody.
Rite off to work now newly regenerated and battery in my phone fully charged. Time for alot of phone calls.
Again thank you all
Dean x |
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Re: Re: Re: newly diagnosed type 1 |
that's ok, it's a pleasure to pass on needed information, this country is only just getting it's head round type 1 SMA and alot of medical professionals haven't even heard of it.
America are far more clued up on it and i did my own research then confronted the consultants with it.
good luck, it sounds like you are trying to focus positively. |
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Re: newly diagnosed type 1 |
Hi Dean.
Very sorry to hear about your son. As distraught as your are it is great that you are gathering as much information/advice as you can. Our daughter also had type 1 (diagnosed at 6 weeks). Mollie passed away last month aged 1. This is the first time I have posted on the forum so I hope it makes sense.
We treated Mollie's physio as play....... we used to sing the Okey Cokey whilst doing the arms and leg movements. Sing jogging, jogging, jogging...... jogging all day long whilst doing jogging legs..... same for cycling, jumping, skiing and the can can. Mark used to do arm exercises which replicated weight lifting, ie bench presses etc. We used to take Mollie swimming 2 to 3 times a week which we all loved. The swimming pool allowed us to use the first aid room to change her (this was a small warm room).
Mollie loved cuddles and we did this by lifting her up to our body and her head rested on our shoulder......... doing this meant we could pat her back which forms part of chest physio anyway.
Mollie smiled and had fun every single day so if we can be of any further help then we would be pleased to do so. |
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