Tuesday, November 17, 2009

Place your oders! Team Avagrace apparel!

Team Avagrace apparel is now on sale! The back says "Spoons are useful, but not during a seizure!" During a seizure: Keep mouth clear, Protect Head, Call 911, Time it!" The front says "Eliminate Epilepsy, Team Avagrace"

The best part of these shirts are that they raise awareness. The second is that they raise money! All proceeds will go to one of two places.

The first is for a swing that is safe and accessible for children with epilepsy, autism, limited mobility etc to be placed right here on base! There are many children on base with health limitations and yet no accessible playgrounds or equipment! If the base will allow us to donate on in Avagrace's name this will happen!

The second place would be the National Epilepsy Foundation for research so that we can find a cure. If you have a preference as to which fund you want your money to go to please let me know, otherwise we will divide the money equally.

So here are the pictures. Hoodies are $25.00 and T-shirts are $15.00. They come in all sizes and were designed by me and Avagrace. Order now!!!

Monday, November 16, 2009

Update on Gracie

For my regular readers, you already know that Avagrace has been going through another medicine switch. To date this is the first medicine switch that has not had major adverse affects! PRAISE GOD! She is improving and is not regressing quite as much! She is more like her typical self than ever before!

She has gone to 25 mg of Zonisamide and 5 mg of Melatonin at night and 750 MG of Keppra XR with a B6 in the morning. in 2 weeks she will be on just the Keppra XR.

I am very optimistic about the single medication plan with Keppra XR. She has never been able to be seizure free with just one medication, however, Keppra XR is an extended release so that means it will maintain it's levels in her bloodstream longer.

Please keep this switch in your prayers. It is always best to be on the least amount of medications. This means fewer side effects and a healthier brain. With the Gluten and Dairy (almost 100%) free we have seen significant improvements as well! Now if only we could find an athletic program that will allow her to join and that the doctors will approve of! Come on Dance!!

On a side note I have an article published on Divine Caroline for National Epilepsy Awareness Month, please take a moment to check it out! Just click on the Divine Caroline Link above!

Sunday, November 15, 2009

Epilepsy Awareness Month...What Now?

I am a researcher. It is in the core of who I am. I love it. I love to find the facts on products, services, options. I even love to help other people make decisions even though at times, I can be very indecisive. However, once I am confident in a decision I rarely waiver from it.

When Avagrace was diagnosed with Epilepsy I immediately wanted to know what I could do to make things better/easier/'normal'. One thing that changed very quickly was our regular rides on ambulances and dealing with the aftermath of a seizure. Epilepsy Awareness month is all about research and knowledge so I hope what we have found may help you or someone you know.

When Avagrace experiences a Grand-Mal or Chronic Tonic seizure a few things happen aside from the tensing/jerking that bystanders see. Sometimes she may loose control of her bladder during that seizure. That means that when she is responsive again she will feel wet and be embarrassed. She is five and has been potty trained for some time now. This is not ok in her mind, even though we all know that she had no control over it. The first time this happened we knew we needed to have a change of clothes ready at all moments, to be carried with Avagrace so that they will be ready for her to minimize her sadness about her condition.

The next thing that was consistent was that after every Grand-Mal seizure she would have an insatiable appetite and be very very cold.

Lastly, following her 37 minute-long seizure we were given a prescription for a rectally inserted dose of Dia-stat Acu-dial (vallium) to relax her body during a seizure so they will not continue after five minutes. So now we had a medication that could save her life during a seizure and we needed it at our disposal at every minute and every second of every day!

Now the mama in me thought that Gracie needed a really cool bag to carry all of this in. And so we went out on a date and purchased a backpack that was the perfect size to carry a blanket, her healthy snacks, a bottle of water, her medicine, some baby wipes to clean her up, extra socks, and a some distractionary tools like a sticker book (great for fine motor skills but not too exhausting following a seizure) and a story book that I can read to her.

Not every seizure requires a trip to the hospital or an ambulance ride. Just the Chronic Tonic Grand Mal seizures that last longer than a few minutes. These are the seizures that limit oxygen intake. So our trip always entails oxygen on the ambulance and sometimes in the ER. Usually in the ER they adjust her meds and document her stats in her file. That way they are official and not just self-recorded from home. This helps with insurance companies, doctors, and helping agencies.

The other benefit of her safety bag is that it gives her empowerment over her seizures that she is not truly aware of. She only knows the aftermath. The waking up in a strange, noisy environment with an IV being placed and bright lights being shone into your eyes despite the fact that you have a massive headache. Now she has a few more constants than mommy.

The safety bag has also opened the door for questions from the kids she interacts with at our home school group, church, and neighborhood. They have asked why we always have it and why we call it a safety bag.

Epilepsy Awareness Month Continues and I would love to know if anyone else has some routines or practices that they have put into place for the safety of their epileptic?