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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