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Daughter with narcolepsy and cataplexy

She doesn’t want to take her meds anymore.
She says they alter her personality.
She recognises she needs them to learn ( she also has ADHD and Autism)
She is sad, anxious.
Please help

  1. Hey, I'm so sorry to hear this! As someone who has struggled a lot with medication, I can understand where you're daughter is coming from somewhat. It's so so hard to find the right medication and then find the right balance of that medication AND on top of that be able to maintain that same effect over time.

    I'll be honest with you, I'm terrible when it comes to my medication and although a lot of people give me great advice...I confess that I rarely am able to take it on for some unknown reason.

    In my experience, medication choices are up to every individual person and unfortunately, we can't make these decisions for anyone else.

    I think the only thing you could maybe try and do as a parent is to be supportive and maybe show her other options that aren't medication that could help her deal with her symptoms (lifestyle changes, diets like keto, strict sleep routines like daytime naps, exercise...etc)

    I know that this probably isn't anything you haven't heard before but hopefully it helps in some way. The best thing to remember is that life with narcolepsy is always hard but everyone has their own story and their own way of dealing with it.

    She is extremely lucky to have you as a mum! I wish I had the same kind of support so trust me you're already doing an amazing job!! Take care hun! Iris xxx

    1. Hi . You are in such a difficult position. If you don't mind me asking, how old is your daughter? Have you and she talked with her doctors and/or a therapist? It's hard enough being a kid, but it is even more difficult when medical issues make you different from your peers. Has she stopped taking all of her medications or only the medication for narcolepsy/cataplexy? Keep in mind that we are not experts. I am responding simply as a mom to four kids who were all on anxiety or OCD medications at young ages. It was really scary for me when they each reached an age when they wanted to come off them. Three are still med-free years later and doing well (Maturity helped tremendously with developing coping skills. Medication bough them that time.). One has gotten a more accurate diagnosis on his own and better medication. Of course, none of them have narcolpesy. So it's a very different scenario. As hard as this is, how do you feel about letting her give it a try? If she is looking for control and it's safe, it might be helpful to let her go off her medications for a bit and decide for herself whether to go back on them or which meds she wants to take again. You could make therapy a condition if she is agreeable and if you have the time to take her. It can be really important for kids who have always been on medication to know what it is like to be without them. The experience might ensure that she takes charge of her medications herself as an adult and that she stays on them. Better to have her go off meds at home for a bit than to go off them when she is old enough to make those decisons entirely on her own. This is the time for mistakes, when she is young enough to recover from them.
      I might be entirely off-base, so I hope others will chime in with their experiences and advice. I do know that your deserve all the hugs and support in the world. It is hard to see your own child contend with something like this. It can leave you feeling helpless and alone sometimes. But please know that you are never alone. We are here for you whenever you need us. Warmly, Lori (Team Member)

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