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Tips for Parents of Children with TN

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Stacie’s Story It’s hard being a kid with trigeminal neuralgia.  But it’s also hard being the parent of a child with TN.  Almost immediately your relationship changes to include the roles of caregiver and advocate.  I think any parent who has a child with a chronic illness would never begrudge those roles, it’s just not …

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Surgery Pre-Op for Caregivers

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Holly’s Story My daughter Tiffany asked that I write about my perspective as a caregiver after surgery. I won’t tell you everything that happened throughout my daughter’s three brain surgeries. To do so would be an exceedingly long narrative and panic anyone’s loved one who was considering the procedure. What I will do is give …

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Speaking Out as a Caregiver

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Laurie’s Story In life we take so much for granted. Most of us go through our day without a second thought to simple things such as getting up out of bed, getting dressed and looking forward to the day. In 2005 I had an eye opener. I am speaking to you as a mother of …

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Tips on Helping Mom With TN

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Hunter’s Story My name is Hunter Ashleigh Gust. I’m 11 years old and I’m in the sixth grade this year.  My mom, MaryEllen, has trigeminal neuralgia. Right now, she has both typical and atypical pain. She was diagnosed in 2006; I was only 6 years old then. Over the past 5 years, I’ve learned there …

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Motherhood and TN

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MaryEllen’s Story Here’s the thing about motherhood; in all honesty, being a mom is the hardest job you will ever have. Every mother wants to be able to look back with a sigh of relief and realize she raised a child who is happy, healthy, and makes a positive impact on the world. As a …

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Tips for Parents of K-12 Students

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Does My Child Need an IEP or 504 Plan? In the US, an IEP is an Individualized Education Plan (IEP), mandated by the Individuals with Disabilities Education Act. A child with facial pain will fall under the category “Other Health Impairments (OHI)”. The IEP describes the goals that the IEP team (including parents) have set …

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Caregiver Tips

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We on the YPC reached out to some of the caregivers in our network for their advice on how to best help TN patients and other caregivers. Several common themes emerged from their testimonials, and we agree! The most common tips we’ve heard are: Listen Trigeminal neuralgia is an invisible illness, so you won’t always …

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Traveling with Facial Pain

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Many young patients find themselves traveling often for pleasure or business. Traveling by either car or plane can aggravate some patients’ facial pain. Some patients may also find themselves seeking treatment in an unfamiliar hospital. Being proactive can help you get treatment (if needed) faster, or simply make sure your travel plans go smoothly. 1) …

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Working When You Have TN

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First, you will need to assess if you can continue to work as you did prior to your illness. If not, you can… Ask your employer for some changes to accommodate your TN Take a short-term leave (either through a work leave policy, the Family Medical-Leave Act (FMLA), or both) for treatment, surgery, or until …

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