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newly diagnosed grandbaby 6 months with Dravet Syndrome
Wed, 05/15/2019 - 19:18Topic: Share Your Story
Hi everyone. I am new here. I have a daughter who has had pseudo seizures for years, so I am not new to what it looks like. I know as a nurse these are not as dangerous as epileptic seizures. My 6 month old grand baby was diagnosed with Dravet Syndrome. I am scared. I am sad. I am feeling so many emotions. I cant imagine what my daughter is feeling. I am trying to be proactive. I am looking into getting her a service animal. I don't even know where to start. If anyone can put me in the right direction, I would most appreciative. I feel so lost. We live in a small town and already are having difficulty in getting her medications. She will be seeing the team at Lurie's Children's Hospital in Chicago. I have joined the Dravet Syndrome Foundation and this one as was recommended by the doctors at Lurie's.
Hi Francine, Thanks so much
Submitted by Anonymous on Thu, 2019-05-16 - 09:09
Hi Francine, Thanks so much for posting and for sharing your experience. For additional information on Dravet Syndrome & epilepsy please visit, https://www.epilepsy.com/learn/types-epilepsy-syndromes/dravet-syndrome & https://www.epilepsy.com/learn/diagnosis/diagnosis-101-basicsAs caretaker, https://www.epilepsy.com/living-epilepsy/parents-and-caregivers it’s important to make sure you’re taking care of yourself as well. The Wellness Institute https://www.epilepsy.com/living-epilepsy/our-programs/wellness-institute , provides tools and strategies to better assist your loved one and support you in your important role. https://www.epilepsy.com/living-epilepsy/healthy-living/stress-and-wellness/managing-stress Sometimes it's helpful to connect with other people who live with epilepsy or care for someone with epilepsy, to ask questions, share experiences, and find and give support to each other. Find your local Epilepsy Foundation at epilepsy.com/localsupport , www.epilepsy.com/affiliates to find support groups, events, and programs in your community.For additional information regarding medication assistance please visit https://www.epilepsy.com/living-epilepsy/247-helpline/patient-assistanceAnd for seizure dogs, https://www.epilepsy.com/learn/seizure-first-aid-and-safety/seizure-dogs& https://prd.icarol.com/landing.html?token=cf741f09-1ef4-4d4b-9d0a-2c37e652a388&cssMode=Publish&orgNum=72318&db=72318 , or by contacting our Epilepsy & Seizures 24/7 Helpline: 1-800-332-1000, contactus@efa.org , epilepsy.com/helpline , where a trained information specialist can connect you to resources, provide referrals and additional support.