Embracing a Healthy Family: benign rolandic epilepsy
Showing posts with label benign rolandic epilepsy. Show all posts
Showing posts with label benign rolandic epilepsy. Show all posts

Purple Day March 26: Wear Purple and Show Your Support

Tomorrow is Purple Day which is a day to raise awareness and support all the people with epilepsy both alive and passed on.  Purple Day is significant in that people are asked to wear purple .. isn't that easy?  There are many events going on throughout the world in celebration of this day.  Epilepsy is a disease that afflicts more people than you probably realize.  I never knew until my then five year old was diagnosed with it two, almost three year's ago.  It's a terrifying disease in that one has seizures which can be controlled and in many cases, not controlled.  Epilepsy even kills which is an even lesser known fact about it.  Seizures are the culprit but they really don't know why it happens but SUDEP is real and many children and adults have lost their lives to it.

This Saturday, please join in and wear purple and tell someone about why you are wearing purple.  My seven year old daughter, founder of Angels4Epilepsy.org, is delivering purple Pillow Pets to the local children's hospitals for any child currently hospitalized but mostly to support any child enduring testing or other procedure related to epilepsy.  We are also delivering small bags to drop off at the Ronald McDonald House for parents who are enduring a hospitalized child.

Check out the Anita Kaufman Foundation and learn more about epilepsy and Purple Day.

Military Medical Care, My Children's Chronic Medical Conditions & An Etsy Seller Medical Alert Buttons

At long last, the girls were able to experience snow!  The two year old never has seen it in person and the last time my six year old had, it was four year's ago when we lived in Indiana.  We moved from Indiana and spent one year in Hawaii post my husband's deployment to Iraq and then to Georgia.  This summer, will mark our third and hopeful, last year.  While hubby deploys to Kuwait in May, I get the task of selling the house and moving to our next location.  Anyway, we received 6-7 inches of snow and it was glorious except for our six year coming down with a severe ear ache and congestion.  The only thing that provided her any delight was the snow so we had to let her go out both yesterday and today, completely bundled up and not for long.  She's not speaking due to the pain and since she already has epilepsy and migraines, I didn't want to prolong it in case it did end up being H1N1 for both gir's sake.

In June 2008, within two week's of one another, both girls were diagnosed with Benign Rolandic Epilepsy and some unknown pulmonary possible immune system issue.  Both girls were healthy and had no issues until post vaccinations. Coincidental? Perhaps but I have no idea so I move forward focusing on care and treatment.  Both instances landed my girls in ambulances from the local military hospital to the local children's hospital because they quite frankly, are unable to treat chronic conditions in children.  There is a long story on the trials and tribulations I've suffered at the military hospital but I'm not focusing on the past.  Today, I'm focusing on what happened today.

We arrived, no one else was there so that was a nice surprise as the wait can be long as anyone who visits an ER knows.  We are sent back for vitals and the intake person, possibly a nurse, doesn't know what Benign Rolandic Epilepsy is so I explained and provided the medication along with her newly diagnosed medication for pediatric migraines.  I was alright with that as it wasn't the doctor so it would be fine.  Upon being shown to our exam room, the doctor came in.  He was a very nice, polite and professional doctor who I liked.  He asked what the medications were and I said "Benign Rolandic Epilepsy."  He said he never heard of it.  I suppose it might be an uncommon condition but from all that I read, quite a few children are diganosed with BRE and with luck, they outgrow it when they reach puberity.

My summation to today was since the medical facility had no idea what BRE was, found no problem with my daughter's pain and congestion other than "perhaps a virus," I'm not comforted and am still sitting by her side with worry.  It's hard trying to keep the two separated as they spend so much time together.  I'm assuming it's not H1N1 since they weren't worried over the ear pain, fever and congestion.

This is a picture of her during her last EEG to monitor the electrical waves in her brain to help determine type of seizures she is having.  In spite of a scary situation, we had a great two nights together playing, coloring and just having some "mommy and daughter" time.

The other purpose of the post is to draw attention to a fantastic Etsy and Ebay seller who creates and sells buttons highlighting certain medical conditions.  Based on my interactions with her, she created epilepsy awareness buttons and buttons to warn others that the person has epilepsy.

Her shop is Creative Clam and I'm overlooking her New Orleans Saints' Who Dat button (I''m a Colts Believe diehard fan).  Here are two of the new epilepsy buttons:

She has all my children's medical conditions covered: Epilepsy, Asthma and Allergies.  There are so many and they are inexpensive which is why I included the post.   I like the idea of the buttons if my six year old is on a school field trip or participating in an event away from me as it draws immediate attention to her condition.

There are many other non-medical products too and being a military wife, I'm excited to see some future military buttons coming out!

Youthful Tips

Importance of Vitamin D in Children: Get Out in the Sun!

I have posted before about my two youngest, who have chronic medical condition, and it was nearly a year ago on Halloween that my then, one year old caught a cold trick-or-treating and ended up intubated and on her death bed two hours away in Savannah, Georgia. Her condition still baffles her doctors and her every day medications are troubling to me as I can't fathom how it can be good for her to be on a twice a day inhaled steroids and a once a day dose of Singulair.  The six year old is on Keppra for Benign Rolandic Epilepsy. 

Both incurred the onset of these conditions in June of 2008 within two week's of one another so I've learned a lot about both conditions and in pursuit of finding out how to stop my littlest one from crashing everytime she got a cold, we kept up with our routine doctor visits and followed all advice.  One of the important orders he prescribed was Vitamin D exposure.  He told me to take BOTH of them outside for 15 minutes a day.  He told me how Americans are in a deficit for Vitamin D and especially children which can lead to all sorts of health implications. 

He explained with all the scares behind skin cancer and the use of sunblock and our growing inactive lives, we stay indoors more which makes sense as I remember being brown all summer long from the hours of play outside.  Unfortunately due to the fear of bad people, I never let them play outside alone and I certainly don't have the time to do so which 15 minutes minimally is a great compromise.

I think this exposure to the sun has helped as we have had no trips to the ER or hospitalizations.  This has been a GREAT relief because in the past year, we had well over 10 visits to the ER or were hospitalized between the two.   Vitamin D is a great defense against colds and boosts the body to ward off things or harsher symptoms with the flu or H1N1.

Our Day at the Riverbanks Zoo in Columbia, SC

Click to play this Smilebox slideshow: Our Day at the Zoo
Create your own slideshow - Powered by Smilebox
Make a Smilebox slideshow

We decided to go to the Columbia, SC Zoo today since we hadn't done anything special with the girls since my husband returned from Iraq.  The zoo is small yet very nice.  One of the things I like the most is that everyone is so polite and nice and you get to get up close to many of the animals.

Back to the zoo .... the girls had a great time feeding the giraffes, riding sculpture animals, seeing all the animals and riding the ponies.  I can't think of a better time than to see the shear joy on children's faces!  

Youthful Tips
Related Posts Plugin for WordPress, Blogger...