A couple of links which may be relevant to some Angelman Syndrome families as well as other children and adults with disabilities.
Children and adults with disabilities may suffer from respiritory problems more frequently, quite often due to restricted mobility, dysphagia or an ineffective cough. There is a very good summary here
Chest Physical Therapy is often used to help loosen and expel secretions. Quite often parents may have to learn to perform some of these exercises on their children, in particular "percussion". As Jen rightly pointed out in a comment, if you haven't been taught to do this properly then it's quite likely completely ineffective. Although nothing replaces instruction from a qualified physiotherapists, I found this link on performing CPT worth taking a peek at. It pointed out to me, that I haven't been instructed properly.........
As it turns, out performing any kind of exercise on Dimitri is not that easy, as he is nearly 10, and a strapping lad! So instead I've opted to trying to keep Dimitri as mobile as possible. That would be: me chasing him around the house, bouncing on the furniture (him, not me), or on the therapy ball, tickling, and trying to get Dimitri to copy me cough (which he does sometimes as he thinks it's funny to hear phlegm gurgling in his throat - although sometimes he may copy a complete stranger on the bus and then laugh, which can cause some misunderstanding)
9 comments:
Chasing him around will probably work as well as anything else :-) It still makes me cringe a bit to think that when I had asthma as a child (40 some years ago), the doctor advised my mother to keep me from doing any physical activity. Fortunately she had more sense than that.
And thanks for the link to the CPT site- I'm definitely keeping that one around!
I hope that Dimitri's feeling better!
Hope Dimitri is better too! And that you are getting some rest?
This seems unrelated but following Jen's comment---I had asthma too as a child and was forbidden to do any physical activity. Then when I was a teenager I started doing cross-country running and that was really the end of the asthma!
You've got me thinking about respiratory woes and coughing---Charlie is very bothered when we cough. We have been lucky in that, aside from a bad case of croup some years ago, he has not had many illnesses....I don't think he would be a good candidate for CPT!
Thank you both - Dimitri is feeling better (still coughing, but that is to be expected). Rest, um..... sort of :-)
Funny about the asthnma advice - similarly, my MIL has told me many times, how the doctor told her to put something silver such as a spoon in her sons (my husbands) mouth when he had febrile seizures as a child - extremely dangerous!
This is such a great post, Emma! Very informative and helpful - especially for me. However, I totally cracked up when I imagined Dimitri copying strangers as they cough on the bus :) :) :)
Erika - Glad it's helpful! Yes, it can be quite emarassing :-) Dimitri will copy with a really fake sounding cough and then laugh. Even worse, one time we were sitting opposite someone who had tics, I spent the entire time trying to distract Dimitri as he found it completely fascinating, and of course, was breaking out in Angelman giggles...............
HI Emma, I'm back from he UK so we must get together soon!
On a different note if you need a hand with the chest physio just give me a call - I can at the very least show you how its done!
Adele xxx
Hi Adele - Coffee sometime???
The CPT doesnt go well with Dimitri - he's not cooperative............may ask for your help yet!
Ιs he better now? :)
Athanasia - I took Dimitri back to the doctor yesterday as he was still coughing, she thinks its a virus (different doctor), so he is off school again as it may still be contagious. Hopefully it won't last too much longer...........
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