Moebius Syndrome is a spectrum disorder, which means that there is a variety of ways that it affects people who have it. Luckily for us, Ozzie’s case is quite mild. In addition to his other Moebius symptoms, Ozzie has difficulty with mouth movement as well as sucking and swallowing, which is governed by the Cranial VII nerve.
Because he has trouble with swallowing, he is at risk of aspirating, or inhaling a foreign body or fluid into the lungs. This has led to problems feeding – all his fluids must be thickened to prevent aspirations. Also, because of his trouble with drooling, when he gets a virus and can no longer breathe through his nose, he is at high risk of aspirating on his own saliva.
Premature babies are at a high risk of contracting the RSV virus, which Ozzie did when he was 4 months old. This led to the first of many aspirated pneumonias and a week in the hospital in isolation.
Ozzie has since had difficulty handling viruses because of the aspiration risk, and was hospitalized more than six times in his first year. Almost every time he’s been hospitalized, he has needed help breathing and has been on oxygen.
They would give him Ventolin via saline nebulizer to help open his airways, which would help sometimes, sometimes not. Sometimes just the saline vapour would help. But after three or four hospitalizations, our pediatrician decided to try giving him a twice daily does of Flovent to help him handle viruses better. While he can’t really have a breathing test until he is older, we have been treating him as if he has asthma, which seems to be helping. As Ozzie gets older and stronger, we have been able to handle more and more viruses at home, only going into the hospital when his breathing becomes laboured. However, he is still susceptible to viruses, even the common cold. Please take the necessary precautions in the upcoming cold and flu season to help keep kids like mine out of the hospital.
The Lung Association’s help line has been very helpful to us as we navigate having a child with asthma and breathing issues. As a mother it’s reassuring to be able to go to the experts when my son’s breathing is troubled. In addition to answering my questions about Ozzie’s respiratory rate they have also educated us in the proper way to administer Ozzie’s asthma medication, as well as given us ideas on how to maneuver our way through allergy season and what triggers asthma. The Lung Association helpline as been extremely invaluable to us. To learn more about Ozzie and Moebius Syndrome, please visit www.imsupportingozzie.com.