arachnoid cyst ,obstructive sleep apnoea,

Tommy is aged 8 years and was diagnosed age 5 with arachnoid cyst left hand side of brain stem approximately the size of an adults thumb nail,chronic sleep apnoea of which 75% of sleep is in seizure, epilepsy with complex partial or absence seizures. behavourial and learning difficulties. Hes a handful to mind as he is always on the go. In January of this year he was placed on steroids  which improved his academic function and his EEG normalised but his behaviour deteriorated to the extreme. He was weaned back off the steriods and the behavour improved but his seizures increased. When he has the seizures they last from two seconds to over 10 minutes but not what you would call a grand mal as he does not fall down and writhe on the floor but these episodes can repeat over and over, he also has periods of being blank. We are concerned over the lack of sleep and rest that he is getting and how this interfers with his learning. His sleep apnoea is aggravated by his rib cage being compressed that in a normal x-ray it shows two ribs above his collar bone. He had an operation earlier this year to remove tonsils and adenoids (adenoids) to assist with his breathing. His medication is Epilim 7.5 mls 2xs per day and lamotrigine 12.5 mg 2xs per day. There are six different agencies and doctors involved with his care. I am getting frustrated with lack of progress and am interested in any comments that you may have.