>Met with Dr. Nino at the Hershey Medical Center Sleep Center.
OXYGEN – 98
Heart Rate – 80
Height 25 1/4″
Weight 14lbs 12 oz
Dr. Nino examined Siena – checked for belly breathing and said she was breathing normally. He said “she looks good.” He asked many questions about her breathing, coughing, choking, seizures, waking at night, etc… He said that since Sleep Apnea is prevalent in PWS that he has several patients with the syndrome – none as young as Siena, however.
He said that Siena had a good night of sleep during her study and believes the results are accurate. She slept well and did not knock of any oxygen sensors. Siena had an AHI of 18.9/hour – anything over 10 is considered severe sleep apnea.
He recommends that the adenoids & tonsils be removed as soon as possible. He believes that if the sleep apnea is resolved – this could help her gain weight. One problem could be the adenoids can grow back – they usually stop growing around 6-7 years of age, as a result sometimes it is necessary to have multiple adenoidectomies Tonsils do not grow back. There is concern that Growth Hormone could make the adenoids grow faster.
Sleep Apnea also effects the the heart and can cause pulmonary hypertension. Another reason this needs to be resolved ASAP.
He feels Siena will most likely need a CPAP (Continuous Positive Airway Pressure) – said to ask the ENT if she should have it before surgery or if we should wait until after. He believes Siena will be able to handle it (with lots of help from us). He showed us some sample masks & put them on her to see her reaction. She did pretty good. CPAP will definitely be needed if she goes on GH.
Dr. Nino also discussed with us the possibility of a tracheotomy and artificial airways if for some reason all else fails to help Siena. He did not want to overwhelm us, but wanted to tell us about all the avenues so we have as much information as possible
We asked if he thought Siena should have an apnea monitor or pulse ox – he does not think it is necessary.
Call him after appointment with Dr. Barth – ENT on Monday and let him know when surgery will be… as of now he will see her back July 12th. He said this will likely be the first of many sleep studies for Siena.
Thank you for the great note taking Susan!!