Hope For Amanda

Living on Faith, Hope & Love

 

I wanted to put together a page of "helpful tips" that have helped our family in various ways over the last couple of years.  The Dravet journey is not easy but it helps to know there are others going through it and who want to help you.  I've also included some of the products that we've used which have been life changing for our family.  Please let me know if you have any questions or comments:  jbniemi@sbcglobal.net

Please continue to have hope for your children's future.  I've been amazed with all the children I've met and they have one thing in common...they are incredibly resilent and always come back after a tough fight!

Seizure Triggers

As you all know, the Dravet journey is not easy but it does get better. Amanda is now 7 years old and our quality of life is so much better now than when she was 3, 4, or 5 years old. Life is much easier once you realize what your child's seizure triggers are..every child is different but at age 3, Amanda's included: illness, heat, fatigue, excitement, hunger, noise, physical activity, any fine motor activity and anything near the face (napkins, paper).   Now her triggers are heat, fatigue, physical activity and illness.

 Please join the Idea League (International Dravet Syndrome Epilepsy Action) which has been changed to Dravet (www.dravet.org)!  This group has become like our 2nd family.  The Idea League also has an online forum where you can talk with other families.  It's comforting to talk with other families going through this challenging Dravet journey.  There are also regional family gatherings and bi-annual conference.  The conference has been held in St Paul, MN;  Chicago, IL;  Greenwich CT and Minneapolis, MN.  The last conference was held in Minnesota in August 2012.  Jason and I were lucky enough to be introduced to the original group at an Epilepsy Conference near Los Angeles, CA in 2005.

Video Monitor

We have been using the Summer Infant Day & Night Baby Video Monitor since Amanda was a baby....it is one of our favorite 'Dravet Accessories" (haha).  We use the monitor on Amanda anytime that she is sleeping, either at naptime or nighttime.  We also bring it with us when we travel to see family, friends and on vacations.   When Amanda was younger, we could hear her when she would have a convulsive seizure at night.  She is now silent when having nocturnal convulsive seizures so we also use a pulse ox.  The Summer Infant monitor is available at Target, Toys R Us and many other stores...and it's less than $100. 

Cooling Vest

The cooling vest for Amanda has been LIFE CHANGING!  Amanda went through a 3 year period where she was EXTREMELY sensitive to heat.  She needed her environment to be 65 degree's, if it was warmer she would have a cluster where her myoclonic and head drop seizures progressed to every couple of seconds.  We were bound to a very chilly house!   The cooling vest provided Amanda the opportunity to go to school and just play outside on a warm day.

Here's the link for the Cooling Vest website:  http://www.coolsport.net/index2.html

Click on the kids vest on upper right side of the page and it will give you 2 different sizes.  We use the junior sport (45-85 pounds) for Amanda.  The sizing is great because the straps are velcro and easily adjusted.  The vest comes with 4 cooling packs.  If you plan on wearing the vest for multiple hours (more than 2) I recommend buying extra packs for the vest.   We've been using the vest for more than 4 years, the school also bought one for when the cafeteria is too hot or to go outside and play when warmer than 75. 

 

We had a very special 5th birthday party for Amanda!  She was able to enjoy the Princess Jumping House even though  it was 80 degree's...thanks to the cooling vest!!

Seizure Bed Alarm

We bought this seizure alarm for Amanda's bed a couple of years ago but unfortunately, she needs to weigh 50 pounds to set off the sensors.  We'll continue to have her sleep with us until she meets the weight limit.  The alarm has sensors for sound and movement which is great because Amanda doesn't make any sound with her convulsive seizures.  She currently weighs 43 pounds so she needs to gain a little more weight because we can start using it on a regular basis. 

http://www.easylinkuk.co.uk/page6.html

Helmets

We love the Danmar Halo Helmet!  Amanda went through 4 years of having dangerous head drop seizures.  Some of the head drops were powerful enough to knock her down from a standing position to the floor.  Most were strong head 'nods' where her head would just drop forward. Amanda also went through a period where she was very sensitive to heat so we bought this helmet because it's open on the top and would keep her a little cooler than the traditional full helmet.  The helmet is available in pink, blue and tan.

https://danmarproducts.c7.ixwebhosting.com/index.cfm?pageSRC=productDisplay&dmproductID=87

Last Updated:  Jan 2011