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!
I feel so terrible for you, that you're going through such frustrating times getting medical care for your daughters. I suspect it's only because the docs at the base just aren't that well versed in pediatric conditions of any kind, except maybe colds. I comment you for being proactive, for being the educated one, for instructing the medical staff in the nature of this epilepsy. You're taking it upon yourself to be the girls' advocate and I have no doubt that YOU will make all the difference in the health care you receive on base. Hugs and best wishes. Just keep doing what you're doing.
ReplyDeleteWanda
Hi Wanda,
ReplyDeleteThank you for comment and kind well wishes! You are right that they are not equipped for complicated children's issues. It's been something to say the least but I can say the local VA is amazing! I was taking my dad there during the summer when he was here and they were something else as he was getting rechecked for a suspected return of colon cancer! Thank you again! Hugs, Judy