My Beautiful Alex (& epilepsy) Update

[Sandy, Cheyenne's mom2]

Just a quick update on my beautiful Alex. She had a small breakthrough seizure last December, but we were all under a lot of stress then with my Mom and a new move in gymnastics triggered it. Her medication was increased at that time. Then she had a major Grand Mal seizure in September on her lunch hour from school, in a convenience store … fortunately one of her friends’ dad has epilepsy, so her friend was familiar with seizures & flew into action organizing everyone there and getting Alex out of danger of being hurt too badly. Turns out this one was probably caused by a case of “teenage memory loss” as she didn’t have enough medication in her system to prevent the seizure. She’s had instances of “the feeling”, but fortunately they haven’t developed into full-blown seizures. The EEG run on her one-year checkup shows she still has full-brain involvement, so we continue.

Alex is doing very well in her rhythmic gymnastics. She is on the performing team, and competed in Winnipeg this past July. Her team won their spot to perform in the World Gymnaestrada in Lausanne, Switzerland in July 2011. What a wonderful opportunity! She has also been chosen to be a junior coach to some of the younger teams. She continues to get taller (at 14, she’s now 5’ 9 ½”) and is quite amused by the fact she will soon be looking “down” on her dad.

Now to correct some misinformation - or incomplete information about the seizures. The seizures are called tonic clonic … the tonic part being the pre-seizure part. In Alex’s case, the part where she has the “feeling”, to the point where she loses consciousness & actually starts seizing. In your dogs, this would be the disorientation, panting, pacing … whatever their unusual actions are prior to the seizure. The clonic part is the actual seizure itself, and this is where I was mistaken. The terms Petit Mal and Grand Mal are still used, but within the clonic part of the attack, and determine the strength of the seizure. There are many degrees of clonic, from the standing still & staring off into space for a few seconds, to the full blown seizing including frothing at the mouth, loss of body functions, involvement with anything from one limb to whole body. For humans as well as animals, there is nothing to be done but ensure they are in a safe place where they cannot be hurt by outside influences, or at least as little as possible, be there for them & keep them warm after and let them sleep. I hope I didn’t mislead anyone with the incomplete information I had a year ago!

[Angie-lah]

It sounds like Alex is blossoming into a confident young woman! Wow! Traveling to Switzerland for gymnastics is such a fantastic honor! Bravo to the family for helping her realize her dreams and do what she is passionate about in life in spite of the obstacles she has faced with epilepsy. She has obviously been blessed with love and support from you. You must be bursting with pride!

[Molly&Hudson]

Hi Sandy,
i remember quite well reading about Alex last December,....wow you surely must be so proud of her accomplishments,...her team winning their spot in Winnipeg now heading for Switzerland next July 2011,...for the World Gymnaestrada,..i wish her the best when competing.
The EEG run results must also have given you relief,...i do hope Alex does well next next July,..and keeps improving.

[Sadie G]

Sandy, I'm so glad to hear Alex hasn't had any more episodes since September. I remember how scared we all were hanging in there with you when she had the episode then. I am very happy to read she is still doing well. I'm sure she remembers to take her meds now

Its so good that you can publicly talk about her trip to Switzerland now and the honor of her team winning their spot. I know how proud you have to be of her. What a talent, and she is as lovely as her grandmother ♥

[Sandy, Cheyenne's mom2]

Thanks Angie, Phillip & Linda. Yes, I'm as proud as punch ... going to Switzerland will be such an awesome experience for her & Keri. And Linda, you're right - don't think she'll be forgetting her meds again soon! It's good to have figured out a system geared for "altzheimer teens". ROTFL

[Oliver & Henry's Mum]

Sandy, I am so thrilled to read about Alex and her accomplishments. She is doing so well, and I imagine you (and her entire family) are bursting with pride, as you should be. How exciting to be going to Switzerland!

As I mentioned in the other thread, thank you so much for the clarification about seizures. You were so helpful to me when Oliver first fell ill. I can never thank you enough.

You will have to keep us posted, and if Alex will allow, share some photos of her performing her Gymnastics.

[kian]

Alex is doing quite well, what a blessing Sandy! She is as beautiful as her grandmother

[Sandy, Cheyenne's mom2]

Thanks everyone! These are from a performance at Edmonton's Festival of Trees, an annual Christmas tradition the team is invited to perform at. They did have their Winterfest at which they performed a part of their Switzerland number, but seems to be too big to attach. Will try to edit - the costumes are incredible, the whole team is large & varied in age, and the complicated numbers they perform are mind-boggling!

My grand-kids are growing fast - way too fast!

I think you can see Princess Diana in the background on this one, as the girls posed... Alex is the tall, blue-eyed blonde on the left.

Festival of Trees 2010-7.jpg (117 KB) Viewed 925 times

Festival of Trees 2010-3.jpg (103.22 KB) Viewed 925 times

Festival of Trees 2010-2.jpg (96.12 KB) Viewed 925 times

[kian]

Sandy it is truly wonderful to see Alex and her friends perform (I noticed Princess Diana looking on!) Alex is beautiful and want memories she is making. Thanks for sharing this.

[Margie-Rex's Mom]

Sandy, it wonderful to see how well Alex is doing. And yes...she is as beautiful as her grandmother.

[Oliver & Henry's Mum]

Sandy, thank you so much for posting the pictures! Alex is growing up and is a beautiful, young woman, just like her Grandma. I also noticed the Princess of Wales right away, as I had to scroll down to see the entire picture. What a lovely backdrop for a photo op.

Merry Christmas Sandy. Wishing you the best of everything in 2011.

[princelover]

Sandy, it is so wonderful that Alex is able to do what she enjoys in spite of her condition and the pictures of her and the other girls were so beautiful. Thank you for sharing. I know that you are very proud of such a beautiful granddaughter. My best wishes to you and to her for a glorious holiday and a great new year.

My daughter also had epilepsy so I am well aware of all the trials which go with the condition and it is an extra special blessing to see a young woman who has and is doing so much with her life. Special hugs to both of you.

[Sandy, Cheyenne's mom2]

Thank you, everyone!

Sher, thank you specially for sharing. You then understand the terror a child goes through when faced with certain intimidating circumstances. She was actually ready to give up rythmic gymnastics, much as she loved it, and not go any further - turned out she was terrified of having a seizure in Switzerland without her family there to help. (Keri will not be able to go after all - "no money, honey"). Fortunately, we were able to reassure her: the whole team knows of her condition and have instructions as to what to do, all the coaches are great. There is one particular coach who is a "super" lady - wonderfully compassionate & understanding, and has taken Alex under her wing sort of as a mentor. She is more than willing to provide the "Mom" help Alex still needs. Yes, Alex is 14, but thankfully, not as "modern & independent" as many 14 year-olds, still willing to admit she needs the support and accept it.

That said, she is very talented and it would have been a shame if she would have forgone this once-in-a-lifetime experience with the team. She continues with the performing team, and the junior group she coaches (4 first timers, 2 boys & 2 girls) are cute as buttons. Hard to believe she was there such a short time ago, now she's teaching them. Her 7 yr-old brother has expressed some interest in being in her class, so we'll see! This is something she really loves to do, and wants to continue in as far as she can.

We are still prayerfully hopeful she will outgrow this, like I said, the whole brain is still fully involved, but the condition has not worsened, so there continues to be the chance.

Hope you all have a wonderful Christmas!
Sandy & Cheyenne