Respiratory problems
A couple of months ago Evelyne was diagnosed with Restrictive Lung Disease. It came as a bit of a shock, although we knew there were issues with her lungs. We were sent to a respiratory (lung) specialist for a check up after I identified she had undergone more than her fair share of chest infections last winter. She also often sounds a bit wheezy, finds it difficult to cough strongly and can get quite breathless. I had always assumed these symptoms were to do with the restriction the brace puts on her chest cavity. The specialist informed me that he would categorise her as having Restrictive Lung Disease, and that he believes this is due to her scoliosis. He believed the curve was reducing the space available for her lungs to function normally. Although our spinal specialist believes the restriction may be more from the effect of the tight brace.
Since this diagnosis Evelyne has been using a nebuliser daily. She has hypertonic saline in the nebuliser in order to reduce the build up of mucus in her lungs. It encourages her to cough and clear the airways. It is again not something she enjoys, but something we have had to build into her daily routine. She had a couple of chest infections at the beginning of winter, but they seem to have slowed and be less severe than last winter.
We also have been using a pram more to reduce her breathlessness, and have applied for a specialist pram through the hospital.
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Hi Lou, great post. It offers a helpful insight into some of the complications of Beals.
ReplyDeleteI recommend getting an Emerson Cough Assist Machine. I'm not sure where you live, but the Respiratory dept at Princess Margaret in Perth help find funding from a charity to get us ours. It is an absolute life-saver during respiratory infections, ie winter. It has saved us many hospital stays during germ season and near-death experiences, which were the norm before cough assist. It can also help move stuff on a daily basis if needed and help keep the lungs big and strong. Perfect for people with a weaker cough. Also, she could benefit from having a sleep study because you may find she responds well to bipap breathing assistance at night and when she is sick. Re: the brace, my son had a lung function test both in a brace and out, and his lung function was reduced by 30% in the brace. Now we live in the US and an orthotics guy here cut out breathing holes in the brace - in areas that weren't actually helping straighten the scoliosis, like a big hole in the tummy and one side - this helped respiratory heaps. He is also tube-fed so a hole in the tummy was essential, but we made it as big as we could get away with and it made breathing soooo much easier.
ReplyDeleteAlso too, beware of too much stroller time and muscles weakening - weaker bodies bring on even more issues. There is always a downside to these choices we have to make. None of it easy. Often dr's aren't much help at all and are guessing just as much as us.
Good luck. :)
Thanks Jasmine,
ReplyDeleteShe is booked in for a sleep study in September, so we hope to discover more at this stage. Did you have the sleep study in and out of the brace also? She will actually be in a cast by the time they do the study, so I'm not sure how the cast will affect her lungs.
Thanks for your advice on the stroller. Thankfully she is the one that wants to walk all the time. She is very independent and would much rather be running along with her brother than being pushed. But it is good to have the stroller for when she overdoes it :)