sophiesmom
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new to your forum, feeling isolated, afraid. my 40 year old daughter has lennox gastaut syndrome, the tonic episodes have increased in the past few months and she has fallen many times, broken her nose, lost front teeth.
she is scheduled for maxillo mandibular advancement surgery at the end of January to treat her severe obstructive sleep apnea which we hope in turn will help reduce the number of tonic seizures and falls. IF she falls and smashes her face/head after this surgery, her jaw will be fragile and may fracture. I am dreading the thought of the surgery and the recovery period, I feel stuck in a negative pattern, very isolated and alone with the fears. She is trying to live independently but has paid support staff through the local regional center. She can't take a step without having someone linking arms with her, up to four tonic episodes daily, high risk of falling. We see alot of one another, we are immigrants living in SF Bay Area, other family in UK not close. Her father died though we divorced when she was nine years old. He couldn't cope with her condition, drank and became violent. I remarried, got divorced again, very painful- maintaining healthy balanced relationship very challenging with special needs child's demands on time energy attention focus. Feel like a failure, very low.
Anyone relate? Can't sleep well, docs want to throw meds at me which haven't helped with depression or sleep, just made me feel awful. Feeling trapped and scared about the outcome and future.
she is scheduled for maxillo mandibular advancement surgery at the end of January to treat her severe obstructive sleep apnea which we hope in turn will help reduce the number of tonic seizures and falls. IF she falls and smashes her face/head after this surgery, her jaw will be fragile and may fracture. I am dreading the thought of the surgery and the recovery period, I feel stuck in a negative pattern, very isolated and alone with the fears. She is trying to live independently but has paid support staff through the local regional center. She can't take a step without having someone linking arms with her, up to four tonic episodes daily, high risk of falling. We see alot of one another, we are immigrants living in SF Bay Area, other family in UK not close. Her father died though we divorced when she was nine years old. He couldn't cope with her condition, drank and became violent. I remarried, got divorced again, very painful- maintaining healthy balanced relationship very challenging with special needs child's demands on time energy attention focus. Feel like a failure, very low.
Anyone relate? Can't sleep well, docs want to throw meds at me which haven't helped with depression or sleep, just made me feel awful. Feeling trapped and scared about the outcome and future.