I’m the Mom of a Teen with Narcolepsy

Posted by on May 13, 2014 in Awareness

By Micki Larrabee

Larrabee Family 2

Dave, Morgan, Billy, Kendra, and Micki Larrabee

Note: Read the blog by Micki’s daughter and PWN Kendra here.

The Beginning

“Why us?” is not a question I have allowed myself to ask for the past three years since my daughter, Kendra, was diagnosed with narcolepsy. Allowing myself to ask that question would put me into a tailspin and down a path I do not want to go. So when “Why us?” starts to make its way to my brain, I quickly stop it and replace it “Why not us?”

A very important lesson that has presented itself during these past three years is that sometimes we are blindsided by something we never expect and it could just as easily happen to us as it could to anyone else.

Just after Kendra’s 15th birthday, our own family was blindsided. My husband and I just thought she had mono or a virus that would eventually go away. Approximately two months after the visible onset of symptoms and several doctor visits, Kendra was given the diagnosis of narcolepsy. Several months later, mild cataplexy unveiled itself.

At first we just thought she could be medicated and she would resume her normal life and all would be well again. Little did we know that we would be establishing a new normal and learning about a severe sleep disorder that we really knew nothing about.

Three Years as a Mom

As a mom, my heart reflects the very essence of each of my three children. I cannot even say the day Kendra received the diagnosis of narcolepsy was one of the worst experiences I have had being her mom. Rather it was the time I realized narcolepsy was never going to go away and she would never have her “old” self back again.

As much as I appreciated people asking me about what narcolepsy was and how she was doing, each time I spoke about it for the first year, I cried. How could I even begin to explain what it was like for her to be so intensely tired she couldn’t think straight or that a night’s sleep really wouldn’t do her justice as it did for everyone else around her? Could people truly understand that we had to adjust our lives and our household because she HAD to have a nap everyday, pay for medicines, and watch her appetite diminish to nothing right before our eyes? What could we say about what it was like to watch her get her hopes up when a medication worked only to have it become ineffective two weeks later?

And cataplexy…that is even tougher to describe…Kendra’s cataplexy comes out as weakness in her joints and muscles to the point that she drops things and becomes uncontrollably weak…who understands that, especially when it’s tied to laughter? Hallucinations and sleep paralysis were incomprehensible as well.

Primarily, it really came down to the fact that I didn’t know how to, and I didn’t want to, convey my deep sadness that my baby girl would be plagued by this evil demon forever and the very deepest part of my heart and soul was in such anguish that I hurt in a way I couldn’t even describe. So when people inquired, I did my best to explain narcolepsy and would eventually just start to cry.

By the second year, it became easier to talk about narcolepsy and cataplexy. It was by that point, I believed that everyone around me should understand exactly what narcolepsy was. The more I spoke with people about it, the more I realized how very wrong I was.

Some people got it and some didn’t get it at all. Some people wanted to hear about it and try to understand. Some really didn’t want to hear about it at all and some just didn’t want to understand. Some made the most supportive comments they could make. Some said very insensitive comments that were hurtful and thoughtless, and some people just didn’t even ask.

One of my biggest personal challenges that I faced during this time was gaining the confidence to advocate for Kendra with her school. Needing to do this made me really step out of my comfort zone, but in the end, we prevailed and made positive headway on her behalf. We also learned to organize her medical care, manage appointments, have the courage to switch doctors, and start a new medication.

As the third year began, a sense of familiarity set in. I knew what to expect with narcolepsy. Recognizing Kendra’s cycles of ups and downs and what triggers her symptoms at a higher level became much clearer. I knew when to contact the doctor and when we could handle it on our own. Mostly, I finally reached a place in my life that I could say Kendra is Kendra and narcolepsy just happens to be a part of her journey but narcolepsy certainly does NOT define her.

Perseverance

Receiving the diagnosis of narcolepsy with mild cataplexy led to the following for Kendra: multiple medication changes, extreme weight loss, headaches, dizziness, tiredness, doctor changes, an EEG, cardiac testing, psychiatric evaluation, test accommodations, homework hardships, betrayal by friends, an additional diagnosis of POTS (Postural Orthostatic Tachycardia syndrome), doctor changes, giving up competitive swimming, and having to prioritize what she could be involved in.

However, through each and every change, though she may not have always smiled, she maintained a positive mindset. It almost seemed that when something new arose that she had to deal with, she worked that much harder at overcoming it or fighting it. This is why her power word has become ‘perseverance’. She has persevered through this entire life-altering journey.

Today, three years after being diagnosed, she continues to work very hard to allow her healthy mind, love for hockey, enjoyment of her family, desire to continue to learn, excitement for college, and the goal to become a doctor be the driving factors in her life rather than let narcolepsy take her down.

There is no way that anyone would ever ask for this diagnosis; yet she has been accepting of it, and while it definitely affects every fiber of her existence, Kendra continually works daily to not let it overtake her life.

Blessings and Hope

If it were an option, narcolepsy would not be a part of our lives; however, it is evident that we do not have control over it. As much as I despise narcolepsy and how it has changed Kendra’s life from what we had planned, personal growth and learning has occurred in my own life.

The blessings in this journey have been extraordinary: receiving a diagnosis so quickly after symptoms began, having excellent medical care, networking with wonderful new people who are in the same situation, developing a deeper understanding that so many people in this world live with hidden illnesses, having family members who are amazingly supportive, and relying on a few friends who genuinely show their care and concern.

The opportunity to recognize how resilient Kendra is has been the biggest blessing of all, and while I know there are days and time periods that will not be easy in her life, I also know that she will persevere because that is what she does.

Being in the time era we are, ‘hope’ is my own power word and I live with it everyday. The research and medical attention being brought to narcolepsy appears to be at its highest peak. People and organizations are advocating for its awareness and better forms of treatment.

Kendra’s diagnosis came at a time where people are on a mission to educate, research, and support. Because of this, I have, and will continue to have, hope for all of this attention to narcolepsy to positively benefit Kendra and everyone else affected by narcolepsy in the next several years.

14 Comments

  1. Time to Sink or Swim » Wake Up Narcolepsy
    May 13, 2014

    […] I’m the Mom of a Teen with Narcolepsy, by Micki […]

    Reply
  2. Maria Thomson
    May 13, 2014

    Thank you so much for sharing your journey. It is one I can relate to in many ways, my 11 year old daughter was diagnosed 2 years ago. It has been hard over the past 2 years but as you say, perseverance and hope keep us going!

    Reply
  3. Mary Van Engen
    May 13, 2014

    Beautifully written, conveying the heart of a parent, the character of a daughter, and an image of the disease of narcolepsy on multiple levels–physical, social, psychological, emotional. Thank you, Micki!

    Reply
  4. Beth Kosiewicz
    May 13, 2014

    I too am a mom with a daughter who is 17 and living with Narcolepsy and Cataplexy. Unlike Micki and Kendra we have had our daughters diagnosis since she was 10 years old. Her symptoms were well managed until a year and a half ago and then everything changed drastically. We almost lost our daughter to this complicated disorder. We continue to persevere but only with many medication adjustments, doctor changes, and tons of refusing to give up. I have become friends with Micki due to our daughters condition. I am very thankful for their support and encouragement and pray a cure will be found in the near future.

    Reply
  5. Gayle Strachan
    August 20, 2014

    I so very much appreciate your story and have a teenage daughter who was 13 when she diagnosed with Narcolepsy and is now 17. I can tell you the exact day that it hit her, which I hear is unusual. She felt nauseous one day in June and went through her dance classes that day and softball games that night without eating. We thought she was getting the stomach flu or had a stomach virus. The next day it was like someone had flipped a switch in her system and she could not keep her eyes open. We went about 5 months trying to figure out what was wrong with her. At first, we thought she just had her days and nights mixed up as she couldn’t sleep at night and then was exhausted during the day. Our doctor ran tests for Mono. and Valley Fever several times. Finally, I mentioned to our pediatrician that she had begun falling down when she would laugh hard, and our doctor decided to sent us to a neurologist. He had a sleep study done and she was finally diagnosed with Narcolepsy. It has not been an easy road. Medication helps, but she is very limited to what she can do outside of school because of her fatigue. We don’t know anyone else who has Narcolepsy, so it is wonderful to connect with others who can relate, share their stories and describe what has helped them to manage their condition. It is a very debilitating disease and can be depressing and very isolating at times.
    Thank you!

    Reply
  6. Amanda Burns
    October 2, 2014

    I have a 15 year old daughter who was diagnosed with Narcolepsy with Cataplexy at the age of 12. Although her Narcolepsy and Cataplexy seem to be “controlled” by her medication she continues to struggle emotionally. Allyssa was diagnosed early on with Narcolepsy which is a blessing that I am forever thankful for, her doctors and nurses have all been amazing. I think the hardest part about the diagnosis of Narcolepsy is the aloneness Allyssa feels. I have watched her personality change, her friends not be supportive of her, and her school do nothing to support her. I love that Kendra has been accepting of Narcolepsy and that she sees a positive outlook in her life. I don’t know how to make that happen for my daughter. We have taken her to counseling which helped her in the acceptance of her diagnosis, but her aloneness still creates a huge void in her life. We will be taking part in a Narcolepsy support group in November which can’t come soon enough. Allyssa has developed terrible anxiety along with her Narcolepsy which is affecting every part of her being.

    Allyssa is a Freshman this year and decided she would try to play sports, after a few weeks into the season she became so stressed about her schedule, homework, and practice she developed bladder spasms, keeping her out of school for two weeks. She had to make the decision sports are not an option for her. She mentioned the other day if there was a school for kids with Narcolepsy she would love it! Everyone would be the same and they would get nap time all together. Allyssa won’t take a nap at school now because it won’t work with her school schedule and it makes her feel that much different from everyone else.

    I could keep going with what is turning into a poor sob story, but I will spare everyone of that. The reason I am commenting on here is because my daughter needs a person desperately to relate to her. It breaks my heart everyday to watch her go about her day in a state of sadness. I need to figure out how to advocate for her and what I should be advocating for. Allyssa is not the type that is going to ask for anything or want to be treated any different than anyone else, but I can see she needs that to live her life with happiness instead of the fear she currently exists in.

    Please e-mail me at [email protected] with anything that may help my daughter. We live in Northeastern Colorado.

    Sincerely,
    Amanda Burns

    Reply
  7. Kara
    October 17, 2014

    My 14 year old is going through all this right now. We don’t have a diagnosis yet but several doctors suspect narcolepsy. I would love to chat with you if you can email me.

    Reply
  8. JOANNE PETTI
    January 9, 2015

    I HAVE A DAUGHTER WHO WAS DIAGNOSED WITH NARCOLEPSY WITH CATAPLEXY IN SEPTEMBER 2012 AT THE AGE OF 25 ..IT JUST APPEARED OUT OF NO WHERE …JUST CALLED ME ONE DAY AND TOLD ME..”MOM IM FALLING ASLEEP AT MY DESK AND IN MEETINGS ….TWO WEEKS LATER SHE WAS COLLAPSING….I CAN’T EVEN IMAGINE THE PAIN OF A PARENT LOOSING A CHILD ….BUT….THE PAIN I FEEL EVERYDAY AND NIGHT SINCE MY DAUGHTER WAS DIAGNOSED CANNOT NOT EVEN BE DESCRIBED INTO WORDS….WHY….WHY DID THIS HAVE TO HAPPEN TO MY CHILD…..IS THIS MY FAULT…BUT THE BIGGEST HEARTACHE I FEEL EVERY MINUTE OF EVERY DAY…IS THAT…..I CANNOT FIX THIS FOR HER….WHY DIDNT THIS HAPPEN TO ME..SHE HAS THE REST OF HER LIFE TO LIVE…..AND THE FEARS I THINK ABOUT FOR HER FUTURE…..I KNOW I LOST MY CHILD THE DAY SHE WAS DIAGNOSED….ITS A NEW NORMAL FOR ALL OF US….BUT IM REMINDED WHAT A LIGHT …A BRIGHT LIGHT MY DAUGHTER IS ..WHEN I WATCH HER DEAL WITH THIS DIBILITATION DESEASE….I GAIN MY STENGHT THROUGH HER…I KNOW ITS HER THAT HAS TO DEAL WITH THIS EVERY SECOND OF EVERY DAY AND CANNOT REMOVE HERSELF FROM IT….BUT ..THIS HAS NOT STOPPED HER FROM LIVING HER LIFE….SHES ALWAYS BEEN THE SHINIEST STAR IN THIS UNNIVERSE….AND …SHE STILL SHINES….I TRY TO GAIN MY STRENGHT BY WATCHING HER CONTINUE TO LIVE HER LIFE….AND LET HER KNOW THAT SHE HAS FAMILY THAT WILL FOREVER SUPPORT HER.AS DO ALL HER FRIENDS…..SHE TAKES HER MEDICATION AND MAKES THE NEEDED ADJUSTMENTS TO LIVE HER DAILY LIFE….WE ALL NEED TO GET NARCOLEPSY AWARENESS OUT THERE….AND DONATE TO RESEARCH WITH THE HOPES THAT ONE DAY IN THE NEAR FUTURE A CURE WILL BE DISCOVERED…

    Reply
    • Monica Gow
      January 19, 2015

      Hi Joanne, thank you for posting a comment. I agree with everything you have said. My son was 10 when the symptoms came out of nowhere and 3 months later he was diagnosed with narcolepsy…he’s 17 now. We started Wake Up Narcolepsy from scratch as a result of what we experienced through the diagnosis period, what we learned about the complexity of the disorder and when we realized no organization was supporting narcolepsy research. I am glad that you are helping the cause with the awareness of the disease. Please let me know if you would like to get actively involved in WUN to raising funds to support research and increase awareness. Thank you, Monica Gow

      Reply
  9. Kim k
    January 10, 2015

    I am 42 with 4 children and I have narcolepsy. I believe that 3 of them have it also. One was tested thus far and it was inconclusive because she woke up right before REM during the final nap. My son is going to see a specialist at the end of the month. He falls asleep at the drop of a hat and it scares me. It is so freaking hard to deal with this disease. I don’t wish it upon anyone. They are used to me pulling over to nap sometimes after 20 minutes of driving. They have scene my knees buckle at the store and the far away look in my eyes. I am lucky to have an employer that allows me to be late and nap during the day.
    Ugh! It all-around sucks!

    Reply
  10. Jennifer
    October 26, 2015

    I have a 15 year-old identical twin boy that’s my son, he has narcolepsy. They are starting him on Xyrem and Ritalin. Do any of your children take Xyrem? I really need a support group, any suggestions?

    Thanks

    Reply
    • Monica Gow
      October 27, 2015

      Hi Jennifer, thank you for your note. Yes, we do have children who take Xyrem. I would be happy to discuss further. If you are interested, please email me at [email protected]. Thank you, MLG

      Reply
  11. Sheila
    January 31, 2016

    I have a 20 year old son with narcolepsy and sleep paralysis. He was diagnosed a year ago. He does not fall asleep sitting, walking, or driving thank goodness. But he immediately goes into REM sleep and never comes out of it. We have bought every single alarm and bed shaker known to man and nothing works to wake him up. Even the old fashioned bell alarm clocks don’t work. He has three and the other day I put them on his back after 45
    Min. Of them screaming and he didn’t flinch. Then I put them up by his ears and ten more min without him moving until I woke him up. Then the paralysis comes in and he falls right back to sleep. If I don’t wake him he can sleep 18 hours or more. He is on Aderal which helps with his exhaustion but isn’t helping him wake up in the mornings. Every morning is a fight!!! He tried to go away to college but failed his classes so he came home and still sometimes struggles with passing a class. He had a great internship but lost his job. It is so exhausting and frustrating cuz he is so stubborn…so he goes to bed too late and plays video games more then he should. I don’t know what to do …do I keep babying him and waking him up which is sooo hard and a fight every morning to keep him in the road to getting his degree…or do you let him sleep all day and figure it out on his own…. HELP!!!!

    Reply
  12. Mandy
    February 9, 2016

    I just stumbled upon this post. My 13 Yr. Old daughter just received her formal diagnosis – Narcolepsy with mild Cataplexy – but we’ve been dealing with the symptoms since she was in 4th grade. Our biggest issue right now is the fact she is extremely bright, and as a result is in an accelerated program in her school district, but the sleep cycles through the day are killing her grades/studies. She has also lost a lot of “friends” and is ostracized by her peers and a couple of her teachers who feel she needs to learn to work through it and take responsibility to teach herself the material she sleeps through. We have looked into medication, but even with insurance it will run us almost $300/month; an amount that isn’t readily available at this time. (I am hoping to get another job to help with added income.) I guess, basically, what I need most are coping strategies for her. Tricks, if you will, to help keep focus during the day. I do not want her to have a diminished view of life because of this disorder or the way others perceive her because of it. Also, are there support groups for teens with this disorder?

    Reply

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