MUSC

Busy Week: Neurology Update {Epilepsy Awareness}

May 12, 2014 by Dana

It’s been a crazy week… and it’s not slowing down.

Last week was a mambo jumbo of activities for us making it one hectic week. I’m proud to say we survived it, though not without some issues. Still looking back, I think how much worse our week could have been but thankfully it wasn’t as bad as I originally thought it was.

Mid-week we had our MUSC check-up with Neurology for Laycie and Jackson. Laycie had a Pulmonary Appointment this day as well, but it was cancelled since she had not had her sleep study yet. Our Neurology appointment was scheduled together for her and Jack though and it went amazingly well.

I must stop here to say that I absolutely, totally and completely LOVE our neuro and the MUSC Children’s Pediatric Neurology Unit. We have been using this same office for 34 years now, as they were also my pediatric neurology team as well, though the doctors have since changed to be replaced by new neurologists. As a parent, we have been using this office for 11 years and though we’ve had ups and downs with care, changed neuro’s a few times, we have always had a wonderful experience with their office. Very rarely do we run into issue with them and that makes such a wonderful difference. The staff truly cares.

That said, we went into our appointment and I was ready to go to bat with my thoughts and ideals but that wasn’t needed at all! The doctor brought to point many of my thoughts before I could even mention them. He had recently cared for a family who’s children have severe issues with Breath Holding Spells with seizure, much like Jack suffers from. He saw my urgency for treatment of Jackson’s disorder and the same fears in this family that I have for my son and for Laycie who also has Epilepsy. He agreed that most likely Jackson’s Breath Holding Spells are a trigger for Epilepsy in him and he also agreed to continue treatment as needed, instead of removing medications.

Talk about God’s blessings! I completely felt them on this day! I left this appointment feeling like we finally had so many answers and a treatment plan that truly fit to us!

Our crazy day wasn’t over though, as that night we had a sleep study for Laycie at MUSC. The study was to check her for sleeping disorders and also do an updated EEG for our neuro. The study was from 7pm-6am and I feel she did really well. Some of the wiring was upsetting for her but she managed through it all. Daddy was there to pick us up bright and early the next day so we could head home. We are still waiting the results of this study to see how she is doing.

Later on Thursday, Laycie had two partial complex seizures happen unexpectedly. The toil of the busy day before hit her like a freight train. These are the first seizures we have noticed since her last breakthroughs last June and I feel they were directly related to the extra excitement for the week. There were no signs of them coming and I am hoping that her EEG showed some activity for the doctor the night before so that he can treat her appropriately.

Since Thursday, things have been busy at home. The week was relaxed. Sunday was a lazy day, with rain keeping us from getting much done.

Today, I’ve spent mostly on the phone. I had some business and personal calls to make, caught up with email, and just got things in order for our medical appointments. I did some odds and ends I needed to get done as well.

Tomorrow, Jackson has his first Hemotology appointment at MUSC. He frequently bleeds a lot from even the smallest of bumps so we are taking him in to see if there is some sort of issue. He bruises extremely easy from the smallest of bumps. If you didn’t know better you’d seriously think my sweet baby boy was abused and this concerns me greatly. So while we were at our Neurology appointment, the neuro referred us over to get him looked at.

So this has been our busy week update. So much is going on that it’s hard to keep up but we are managing. Please keep us in prayer for all of the issues above.

Routine Neurology Visit {Epilepsy Awareness}

December 9, 2012 by Dana

Yesterday, we had an appointment for Laycie at Pediatric Neurology in MUSC – Charleston, SC. It was a routine checkup to see how she’s been doing and discuss her medication. Just another visit for us.

Of course, everything went well. I have concerns about her medication that we discussed with our neurologist. For some reason, Laycie has side-effects for every medication she takes. Depakote is no exception.

Her neurologist suggested I give Laycie a multivitamin with B6 to see if that helps to improve our side-effects. B6 is not a new vitamin but the helpful effects on patients with Epilepsy has just been noticed by many neurologists. It’s being used in the hopes to help balance out negative effects many seizure medications cause.

Medicine has come a long way in the time since I was born 33 years ago, growing up with Epilepsy and even in the past 9, almost 10 years that I’ve been raising children with Epilepsy. Every year more and more is becoming known about this disorder but there is still relatively little that anyone, doctors included, can understand.

What we as parents and patients of Epilepsy must remember is that the brain is such a complex unit. Add to that the complexity of Epilepsy itself and well you find a lot of confusion. The brain is like a complex computer with many different areas that control every single inch of our bodies, inside and out. This computer is only completely understood by God himself and no other being can read or understand it.

What we can do to help learn more is to detail everything we can about how Epilepsy affects each of us, how it affects our children and our families. We can share that information with other parents and patients, along with our neurologists. We can ask to join in on Epilepsy panels and volunteer for testing.

All of these things together work towards the medical teams learning more and more about how our brains work and how Epilepsy affects each of us. Nothing is too small and every one of us can help. Ask and find out how you can do your part today.

The Other Side of Epilepsy {Epilepsy Awareness}

July 18, 2012 by Dana

A few weeks ago we had our VEEG for Emmalee which showed us she no longer has seizures, thankfully. In this post, I want to share my reactions to that testing and our life itself. I’ve been meaning to write about it, but I keep putting it off. Today I’m making myself tell the truth though.

It’s hard being a Mom of three with one on the way and three stepkids to love too. It’s even harder being the Mom of two girls with Epilepsy. I guess I should change that to one daughter with Epilepsy.

It’s been a long road with my oldest, going through all of this for the first time as a parent and not a patient. Watching her seize without any known cause. Seeing her stare off for periods of time for absolutely no reason. Taking her off her medications and praying to God every minute that she will be in control and not suffer from that. Praying too that she would outgrow it and never suffer again every second of my normal thought-filled days.

I think the hardest part has always been leaving it up to God, placing her into His hands and knowing He would protect her. After all, as her Mother, isn’t that my job to do? Didn’t He give me that purpose in life?

When the doctor came in to our room and finally after four days of testing told me that she was perfect, she was smart, she was beautiful and a blessing, my first thought was I knew all of that already. I’m proud of her in all her stubborness and I’m thankful to have her every single day.

When he told me she no longer showed any signs of Epilepsy my heart jumped for joy. Really it did. But what you don’t know is that at the same time, it slammed down so hard that I thought it dropped out of me for a few minutes. Absolute truth.

I mean I should feel so blessed by this but my only thoughts at the moment was “Thank you so much God but why not Laycie too?” Why does one of my daughters still suffer from this while the other no longer carries the burden? Why does my baby still have a chance of seizing while my big girl is done with it all? What makes them so different in His eyes that He does not heal them both?

I know I am not supposed to know these answers. Obviously, He has plans for Emmalee that require her to be well and healthy and live a long life. And I haven’t given up hope that He will completely heal my Laycie too. I know He can make that happen. But I couldn’t help but wonder why one and not the other.

I’m human. I have human faults. I have human thoughts. I control. I am a Mother who God has graced multiply with blessings. All of these are the reasons I immediately thought as I did. I am not perfect and I never will be. But He trusts me with His blessings. He gifted me as the Mother of these girls that He allowed to be burdened and He took away the burden for one. For that I’m am thankful, I am in awe and blessed by Him, as is she though she may not know it.

I pray daily for Laycie to be blessed in the same way but I also know that blessing may not meet His purpose for her and I have no choice but to be accepting of that. I’m thankful every day each of my children are here to bless my life and each other. I could not imagine having life any other way than it is with them in it, even with Epilepsy in our lives to.

I was talking with a dear friend the other day who’s beautiful darling girl also has this disorder. She was feeling things and simply needed a confirmation that she wasn’t wrong for feeling them. They were feelings that only someone in her shoes could understand and yes I thankfully did understand them.

As a Mom of a child with a disorder, we tend to feel alone – as if no one else understands our feelings and everyone else is tired of hearing them. That simply isn’t true. God allows us to walk these similar paths and become friends with each other to help as we walk through these things. I share this story because my friend brought it to my attention that she felt alone and that no one truly understood. I encourage other families to share so that other’s know they are not alone in their feelings, in their joys and disappointments and their fears. There are others who do understand what you go through.

We have come a long way in finding ways to connect through this disorder and ways to change to help each other. Keep going at it. I know I will.

Great News from Our Recent EEG Study with MUSC {Epilepsy Awareness}

July 9, 2012 by Dana

Earlier this month, Emmalee and I went to MUSC for a four day Video EEG study to see if she showed signs of Rolandic Epilepsy or Epilepsy in general or if she had outgrown it. It was a long week for both of us but in the end we discovered that Emmalee is officially seizure-free! I am so very thankful for this blessing in our lives. We have been assured her brain is perfect and working great, with beautiful waves. According to her doctor she is an extremely smart little girl, but I already knew that!!

This doesn’t mean we are done with Epilepsy in our lives. Laycie still has to take medication to keep hers in control. Emmalee must be careful of stress and traumatic accidents that could trigger Epilepsy in her again, as once you have Epilepsy it can easily be triggered unexpectedly at any time. It does mean I can relax and not be overly cautious with her as she grows though.

I am, as always, thankful to God for answering this prayer in our lives and allowing my daughter to continue her life normally. We are currently going through genetic testing to see if there is a trait that is carrying through since we have spent 5 generations dealing with this disorder. Though we haven’t been able to pinpoint anything as of yet, we are hoping with the new seizure panel that is being developed, that we will be able to locate something. I will update as we find out more.

MUSC Here We Come! {Epilepsy Awareness}

April 23, 2012 by Dana

A few weeks ago Laycie was having a few strange things going on that led to a call to her neuro. The symptoms she was having could be related either to her seizures or her medicine but it was enough to concern me after a long period of watching to see what happened next.

The neuro told us that we could not raise her medicine dosage any more. She decided that she would like to test Laycie for a longer period than normal with an overnight EEG and sleep study. I was more than willing to agree.

So this week Laycie, Daddy and I are off to the Children’s Hospital at MUSC in Charleston to spend the week. Grandma will be home with Bubba and MiMi, keeping things going while we are away. Honestly, you’d think we are going on vacation with the amount of luggage we have ready to go: clothes, medicine, private needs, toys, movies, and more. It takes a lot to keep a 4 year old busy during a 3-5 day hospital stay in a room that she cannot leave without a tech to accompany her.

Daddy has to take off work to accompany us on our journey. His bosses are not thrilled with this but he knows Laycie and I both need him there. Being 5 months pregnant doesn’t make this trip any easier on me and being alone with a tired and sometimes very sick Momma doesn’t do Laycie any good either. Needless to say, we are both happy to have Daddy going along with us.

So tonight we have packed and are ready to go. The kids are asleep and we are soon to follow. Tomorrow we wait until we get the call saying our room is ready and then we will head off on our week-long journey in an effort to overcome our battle with Epilepsy.

What are your plans for this week??

October Update

October 12, 2011 by Dana

Today is my big sister’s birthday. Happy Birthday, Sissy! I hope that it’s a great one.

This has been an extremely busy week for us.

Sunday – we went to visit my best friend from Kindergarten. She gave us a beautiful cat named Muffin who is currently living in my Mom’s house. She’s sweet as can be and a beautiful gray color. In a few weeks, I hope to be able to get her little siblings and bring them home too.

Monday – a rainy day for us so we did nothing except curl up around home and snuggle all day.

Tuesday – Grocery shopping and a date with Dad. I really put shopping off until the last minute. I ended up with 3 carts and almost $300 in groceries. I hope that lasts us at least 3 weeks! Date night was a special event. We were invited to Myrtle Beach’s Taste of the Town by a cousin and we had a great time! The food was amazing! We brought the littles home a TON of fun goodies to eat. It was really great just to get away for the night.

Wednesday – That’s today! We’re just lounging around the house, relaxing before the rest of our busy week continues.

Thursday – A trip to MUSC in Charleston. Laycie has a neurology checkup. Time to adjust her medication so that she doesn’t have any breakthroughs and check her levels.

Friday – Sleepover with the Twins and Justain. They are sure to have a ton of fun as they always do!

Saturday – Rodeo night! The kids are really excited about the rodeo. It’s a yearly favorite of ours. Can hardly wait for Saturday to get here!

So that’s our week in review. This week’s schooling is laid back lessons in Life and Socialization and sometimes that’s the best education a child can have.