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Luv'N Lambert Life

Luv'N Lambert Life

A blog about living with Epilepsy, IBHS, Homeschooling and so much more

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neurology

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.  

Filed Under: 2014, bleeding issues, children's hospital, Epilepsy Awareness, god's blessings, hemotology, involuntary breath holding spells, Life with Epilepsy, MUSC, neurology, pulmonology

Busy Week for Us {Thoughts From Me}

June 27, 2013 by Dana

Don’t know if you noticed but I gave the blog a makeover last week.  The green was up for a long time and I was extremely tired of the look, so I created a new look using blue.  Not sure how long I’ll leave this one up but I like the site a lot better now.

This has been a busy week for us.

Monday I completed a review item that took me all day to create.

Tuesday we took a trip to Charleston for Laycie’s neuro appointment and we had a field trip day.  We left Jackson with Grami and the big kids, Grandma and I went to visit Charles Town Landing and the Angel Oak.  It was a lot of fun and there is a blog post coming about that day very soon.

Wednesday, I played rest with Laycie who was exhausted from Tuesday and also played catch up with wedding photos that I have not had a chance to work on since Laycie’s seizure two weeks ago.

Today, I am working on catching up things that are behind in the house: laundry, dishes, cleaning in general.

Tomorrow night I have a wedding rehearsal to attend and photograph and Saturday is the big wedding event which I’m totally excited to be photographing for the beautiful bride and groom.  So tomorrow will be spent prepping by cleaning the camera lenses, charging the battery, making sure memory cards are clear and packing up all the things I need for the event.

This week has been full of excitement but fulfilling in life.  As soon as it slows back down, I will play catch up with our blog posts.

Filed Under: 2013, busy, Epilepsy Awareness, family fun, field trips, life takes off, living, neurology, photography, thoughts from me

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.

Filed Under: 2012, B6, battle with Epilepsy, Children with Epilepsy, depakote, do more, Epilepsy Awareness, Help find a cure for Epilepsy, living with epilepsy, MUSC, neurology, Pediatric Neurology

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