Concerned Mom

My 19 year old daughter suffered an aneurysm at age 6, presented her first visible seizure age 9 at one stage she was having 4 - 5 grand mal seizures a day and was taking loads of medication so i researched epilepsy surgery during the tests we discovered she was born with an arterio venus malformation which was life threatening and had to be removed so at age 15 they removed it hoping the seizures would be more under control and although better the were still affecting her everyday life so last year march she had epileptic surgery which has made a huge difference to her seizures. All through this she has experienced terrible nausea and is still on Five anti epileptic drugs, some days she is so drained she cant get out of bed. This has had a huge impact on our family life as I am a single mom and she has a younger sister. My concern is how much of life she has missed out on shes a beautiful child and I see her missing out on all the things teenagers take for granted, I feel heart broken where will this all end.....

3 Replies

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  • Hi - I too missed out on a lot during my teenage years but I turned my life around and have been successful. Not knowing the detail I thought I would add a few words of advice. She is young and beautiful and needs encouragement and support, which I am sure you already give her. I am not sure how one gets around the nausea issue - maybe consultation with a neurologist, a change in meds or change in lifestyle will help. Im not sure but exercise may benefit her.

    She needs to remain positive about her future and set goals no matter how small. Focus on her strengths and not what she cannot do due to epilepsy. I started an epilepsy social support group in my mid 20's as there was a need for one - this made me realise I was not alone and with the interaction with others, leadership, etc. I grew a great deal in confidence and the more I put the negative epilepsy energies behind me by focusing on helping others, the better things became. My positive outlook, sporting activities, successes at work, etc resulted in fewer seizure frequencies i.e. a change in lifestyle.

  • Hi, I share the view exactly that Tim has said above. My epilepsy started at the age of 16 and 39 years later, I still have it but medication has now managed to control it. She must remain positive about her future and the sooner she accepts her epilepsy, the better she can focus on life and her goals. Time, patience and understanding are the three essential points to living with epilepsy. I also at the age of 16 thought my life was over, but through strength, willpower and understanding have managed to help and support others. Reference her nausea - approach the Neurologist and maybe change medication; it's amazing with side effects medication can have on us and we are all different. Do not give up hope and above all, she must go forward with her life and remain positive!

  • Dear Survivoravm,

    Five anti epileptic drugs are really bad and I would like to just mention something I feel is very important to focus on. My medications are also very high and I have had side effects. One thing I find very important with my self is my wight. It is very important to have a body strong enough to carry such a big amount of medications.You must watch every day what she can eat and what things make her nausea. Give her then as much as possible of the things she can eat. It will keep her strong.I'm sure doctors will find the right medications for her.

    Survivoravm, I know it is hard to see your child struggle,but things will all turn to the better.She is a strong and beautiful child. You must believe in her.

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