Seizures vs VNS (Vagus Nerve Stimulator)

I want to start blogging on a regular basis so I can remember how things are going with Dawson with the new VNS therapy.  I know, some of you are thinking what in the world is that?  I will backup and give you a little history.  So Dawson has been having seizures for two years now.  He had his first seizure in April of 2009.  We were going down Woodruff Road when we looked back and Dawson was blue and he was not breathing.  We stopped in the middle of the busy road to try and find out what was going on.  We called the ambulance to come get him.   When we arrived at the hospital, he seemed fine just really tired.  My friend Angela (her daughter Kaylen has been having seizures since she was three and she also has Trisomy 18) had told me that was how Kaylen's happened.  So after much testing it was determined that he had Partial Complex Seizures.  They happened the same way every time.  They would start with him staring and then his oxygen saturation would drop low (some times as low as 40%) and he would turn blue.  We would do vigorous stimulation and then eventually have to bag him with oxygen.  He would usually be out of them in less than a minute.  It was a very scary minute that seemed like an eternity.  So, we finally got him on a medicine regimen of Keppra, Topamax, and Kolonpin and it had them under control.  In fact he went from January 2010 to December of 2010 with none.  The only reason he had one in December was he had a really bad UTI.  So then in January 2011, he started having another kind of seizures.  The only way that we could explain what was going on was he was "flinching" and "yelling".  At first the neurologist thought it wasn't a seizure just because of the briefness of the episodes.  Well these "episodes" started happening more frequently.  We tried increasing medication and even changing medications.  Well the seizures where not phased and on one medication they even increased.  He was up to having anywhere from 5 to 20 a day.  So his neurologist put us in the hospital for a long-term EEG.  From that EEG, it was determined that these were a tonic seizure and some were even leading into one of the other type of seizures.  The next day when she came in to discuss the results, she mentioned this new treatment for seizures that was a little different.  It was a vagus nerve stimulator or a VNS.  This is basically a small generator very similar to a pacemaker that is inserted surgically right under the collar bone and has leads that attach to the vagus nerve.  It is called VNS Therapy and basically it gives stimuli to the left vagus nerve.  He gets 30 seconds of stimuli every 5 minutes to hopefully help the seizures decrease, stop, or cut down on the severity of them.  I started researching but I think it is still fairly new.  We met with the rep from Cybertronics and ask TONS of questions.  So after that we felt like it was what we needed to try for Dawson.

Well they did the surgery last Tuesday and they turned the generator on today.  I'm not going to lie, I was scared to death and excited all at the same time for them to turn it on.  It basically has to be titrated to the right setting for control of his seizures.  I have been praying since we decided to do it that God would stop the seizures.  Whether he healed him of it or He used the VNS to stop them.  I knew it was all in his plan because of the peace that we had.  I'm not going to lie, I was nervous for the surgery but not about the surgery.  This was his 9th surgery but they have all been nerve racking. (however I don't think that is a totally abnormal feeling when your child is going into surgery)  So back to the activation of the VNS.  Early this morning Dawson had 4 seizures.  They turned on the VNS at 10:30 am and he didn't have one seizure until tonight at about 10:30 pm and he was also very alert all day.  Amazing!  Keep in mind, he has been having anywhere from 6 to 20 a day.  I am not getting my hopes up yet because this is just a very low setting and it may take us time to get to the right dose but I know that he is at least responding to the magnet swipe.  (this is what gives and extra dose to stop the seizure)

I will keep everyone updated!  I am just praying that Day 2 goes as good as Day 1.

On a different note, DJ had a great day today.  He got to go play golf with Daddy in a tournament that benefits the Woodruff Football team.

GOD IS FAITHFUL and we can trust HIM!!

Refreshing Weekend

It has been over a month since my last post and I am have so much in my head that I need to journal.  So I thought to myself, why not just blog.  So here goes...

I got to get away this weekend to go to a women's retreat up in the mountains at The Cove.  It is so beautiful up here.  The retreat's theme was "Get away with God" so that is what I planned to do.  God has orchestrated every part of the weekend so the theme could not be more fitting. 

First of all, I had an amazing Godly lady pay for me to be able to come on the retreat.  You see as a new church planter you don't always have an extra $300 dollars laying around so I didn't even think that I would be able to come this year and then this amazing lady came and told my sister-in-law, Patti Jo, that she would love  to pay for me to be able to go on the retreat this year.  I am praying blessings down on this precious, precious lady for allowing God to use her to bless me.  I SO NEEDED THIS!!   

The only other way that I could come was if someone could watch my kids.  Josh usually hangs out with them when I need to be gone, but we only had one problem...he was out of town this weekend too.  So my precious family stepped in to help.  My amazing mom, my wonderful mother-in-law, my grandmother, my dad, Libby, and my amazing nurse took wonderful care of them this weekend.  I'm not sure that DJ has even missed me because he has had so many people to play with and Dawson probably has had so many kisses that his cheeks are rosy red.

Well the next thing God had planned for me was to be able to be "filled up".  You see, normally when I come on this retreat I am ministering to others by being on the worship team helping to lead worship.  This time I couldn't make all of the practices with everything that was going on with Element, DJ's adoption, and Dawson's health issues so I had to not be apart of the worship team.  Well I have really enjoyed just getting to sit back and soak up our amazing speaker Brenda Blankenship.  That is another God orchestrated thing because guess what she is...a church planters wife and get this, in Spartanburg.  God is just so cool like that!  Well our first session was "When the Gangway becomes a Gangplank"(Trusting God on the Journey)  All of these emotions came rushing in with her first point...God doesn't call us to easy.  Hello, that was the very excuse that I used with God when he told us to plant, "God can i just have something easy?"  She told us that some legs of the journey are sunshine yellow (like a job with an established church and an established congregation), some are midnight blue (Infertility, Dawson's health  issues) (they also come on suddenly and come in bunches), and some are multi-hued (like various trials, all different).  I felt as if she was speaking right to me and then she came with the refreshing words straight out of God's word in John 16:33, "I have told you these things, so that in me you may have peace.  In this world you will have trouble. But take heart!  I have overcome the world."  WOW!!

During this session I had so many things go through my mind.  I am going to split this into two because this one is getting long but I will tell you this, during this session God gave me some very specific things that I needed and gave me something for a couple of our Element ladies.  I can't wait to get back to share with them.  I MISS YOU ALL MY SWEET FRIENDS!!  I truly love where God has brought us and I know this is exactly where God called us.  I love our city of Woodruff, the people of Woodruff, the people of Element Church, and I can't wait to see what God has in store for us as a church in the city of Woodruff.  God is faithful and I Trust Him!!

To Be Continued...

In the Beginning...

Well, I have been inspired to try the whole “blog” thing again.  I have blogged several times on my old blog but I have decided to start fresh and new.  What inspired me is a sweet friend of mine that has had to walk through some pretty tough times and is still trying to help others by sharing her story.  Maybe God could use some of the things I have walked through to help someone else.  I want to be real and helpful with everything that I say.  I hope my blog will always be encouraging, helpful, and  let you know that you can trust God NO MATTER WHAT!!

With this first post I want to tell you a little about the start to my sweet family.  I will start out by saying I have the most amazing family every!!  My family began when my husband, Josh, and I got married in 1997.  He is a truly amazing man of God that I am so glad and blessed to be doing life with. (LOVE YOU BABY!) We had a beautiful wedding, had an amazing honeymoon in the Bahamas, moved into our first home, had amazing jobs, and decided we would go ahead and start having children.   Well God had a different plan for us.  We tried for about a year on our own and then decided to talk to a doctor about the problems we were having.  The job that Josh had at the time would pay for all “infertility testing” but not “infertility treatment”.  So we decided to get tested and we found that I had PCOS (polycystic ovarian syndrome).  Then it took Josh getting laid off from that job to send us to the next job where his insurance only paid for “infertility treatments” and not the testing.  (sound like a God thing to you?) Well the doctors told us that we could still get pregnant it would probably just take a little help to get things started.  So we did the 4 rounds of Clomid, the Ultrasounds every couple of days, the bloodwork every couple of days, 3 rounds of shots, and finally an IUI.   We never got a positive “your pregnant”, and the closest we came was a false negative. (I thought that didn’t happen)  After the IUI, we ask a lot of questions to the doctor and God kept telling us in His time.  So, we decided to let God just do what He knew was the plan for our lives.  Even in this experience with infertility, God was preparing us for what was to come.  He was teaching us how to Trust Him in everything and to live a life of faith when it doesn’t even make sense.

In the upcoming post I will let you know what I mean by that last comment.  God has told us to do some crazy things since he started our family in 1997, but He has always been faithful to take care of us. 

God you are faithful and we Trust You!

To be continued…

Great Friday!!

Today has been an amazing day!!  Josh is off every Friday so it usually is a day we spend together just being a family.  So today started out great with Dawson waking up in such a good mood.  He woke up giggling and smiling from ear to ear!!  Then DJ got up in a really good mood and we all got ready and headed to our "Every Friday" ritual...WILD WINGS!!  It was a beautiful day, sunny and 60+ degrees.  We had wings and then we decided to go to the Greenville Zoo.  Neither of the boys or myself had been there and Josh had not been there since he was a little kid.  Dawson smiled the whole time (until the end and he was getting tired) and DJ was just amazed at all of the animals.  He walked in and saw the elphants and screamed, "Efanat".  It was the cutest thing.  I think his favorite part was feeding the monkeys and especially the goats.  He just laughed when the goats licked him with their tongues as they were trying to eat out of his little hand.  We then took DJ and let him play on the playground and he loved it.  We then came home to an amazingly clean house thanks to my precious sister-in-law, Libby.  She is awesome and I don't know what I would do without her!!  (Love you Libby!)  We then went to eat at Red Lobster with some amazing friends.  (more like family)  We then came back to our house to just hang out.  Thank you Jesus for giving us such a beautiful day!!

God is faithful!!!

Seizures

Well one thing that we have learned with Dawson is that he will always keep us on our toes.  One thing that we have also learned with Trisomy 18, the genetic disorder Dawson has, is that anything could happen or start when you least expect it.  That is the way that it was with several things.  When he was one month old he begin to go into congestive heart failure and had to have his 1st heart surgery.  At 6 months his airway had become so floppy that he was diagnosed with tracheomalachia and needed a trach to help with that, and when he was 2 he was having numerous UTI's (one with a fever of 105) and we discovered that he had bladder reflux.  Oh I forgot right after his trach was removed it was discovered that he had severe sleep apnea causing his oxygen levels to drop down into the 60's and would need to be on CPAP.

Well in April of this year what we were not expecting happened.  We had just went to lunch after church and we were riding down Woodruff Rd.  Josh looked back and said, "Dawson is blue and I don't think he is breathing!"  Well as a mother, this is definately not the words you want to hear about your child.  When I looked back he was a greyish/blue and in a blank stare at me.  When I tried to rub his chest his head just slumped over.  We immediately pulled over in the middle of Woodruff road and started working with him.  We called the EMS and we were taken directly to the hospital.  Well we didn't have a sat monitor on him that time so we had no idea just how bad it was.  They didn't do anything on that trip to the ER because they didn't know if it was an apnea from his airway closing off or if it was a seizure.  I don't know about everyone else but that word, SEIZURE, scared me to death.  He was fine and then about 3 weeks later we were out and he did it again so we went straight to the ER from the doctors office.  This time we had his sat monitor on and his oxygen levels went down to the high 50's.  Both of the episodes had presented the same way.  He would have a big yawn, start a "blank" stare, and then he would turn blue and his sats would drop.  Each time his heart rate went up.

So at that time they decided to try a very mild dose of Keppra.  We started out with 1 ml of Keppra two times a day.  It knocked him for a loop.  He slept for 2 days straight.  So I called them and they went down to .5 mls 2 times a day.  It was working!!  We had gotten up to 1.5 mls 2 times a day and he was tolerating it well and was seizure free.  We had a great summer seizure free and then in September, on our anniversary, he started the episodes again.  Only this time he would have one that lasted about 30 seconds and then 1-2 minutes later he would have another one.  We upped his Keppra several times and they continued to happen.  They had gotten so frequent that for 6 weeks straight we had one every Monday between 5-7 pm.  We could almost predict when they would happen.  The doctor that Dawson was seeing at the time just kept wanting to up his meds but kept telling us that he didn't know for sure if it was seizures or if it was his airway.  Well we really prayed about it and talked with our pediatrician.  We were at the point of driving to Charleston just to see someone else.  Well when we talked with our amazing pediatrician, which might I add loves Jesus a WHOLE bunch, he told us to try one other doctor before we did that.  So we agreed.  Oh, I forgot to tell you that we, along with Dr. Dobson and Dr.Gault, thought it would be a good idea that we do a long term EEG in the hospital to determine if it was definately seizure activity.  So we mentioned it to our neurologist and after some hesitation, he agreed to do a long-term EEG.  He would put us in the hospital for up to 4 days and monitor him to hopefully catch one.  It was a really weird feeling when we were there that where we had been praying, "God help Dawson to never have another seizure" to "God please let him have one of these seizures while we are on this test."  We just really wanted a definate answer because I think the unknown of  whether it was a seizure or if it was his airway and he needed a trach back was what was the scariest.  Well that was the 6th week and like clockwork he had one and they saw it on the EEG machine, PRAISE THE LORD!!  The doctor that we had been seeing came in on Tuesday and said, "Well yesterday was Monday, did he have one?"  I think he was a little suprised when I told him yes.  So it was determined that he was having seizures.  He changed his Keppra from 4 mls two times a day to a total of 10 mls three times a day.  He had one more seizure after that and the doctor added another med, Klonopin, which is in the same family with Diastat.  He started him on a dose that just knocked him out so we cut the dose in half and it seemed to stop the seizures.  They had stopped for almost a month and we went back for our follow-up. 

So when we went back for our follow-up, Dr. Dobson called in and switched us to the new doctor.  So
we started seeing Dr. Addie Hunnicut. (well to say the least, we can add her to the list of amazing doctors that God has blessed us with)  She was amazing!  The first time that we went in to see her she not only got alot of information on Dawson but she gave us alot of information about Dawson's seizures. This is the first time that we had gotten any detailed information.  She showed us the activity that they had captured on the EEG and even took the time to explain it.  Dr. Hunnicut told us at that time that his diagnosis was complex partial seizures.  She then had a plan that she explained in detail to us.  Her plan was to try and switch Dawson to another med other than Klonopin because it is in the same family with Diastat that they use as an emergency drug, and they want to make sure that he would respond to the emergency drug if necessary.  So we started Trileptal with the Klonopin with the hope that we would begin to ween it after about a week.  We started to ween but then he had a seizure so she decided to wait until the Trileptal had been in his system for 2 weeks.  Well when he had been on it for 2 weeks he broke out in a head-to-toe red rash. (Welps!!)  So we stopped the Trileptal and started with Topamax.  Well we are still trying to adjust his dose but he has done well on it.  Hopefully soon we will be able to start to ween his Klonopin again but as for know we are on 3 seizure meds. :( 

I know this was alot of information but maybe it will help some one else.  I wish that I had been able to find some kind of information when I was starting this journey.  I will keep everyone posted.

One of the many parts of our journey and continually we are remined, God is faithful!!

New Year - New Start to Blogging!!

Hello all of my sweet friends!!  So, I noticed today when I pulled up my blogroll that my sweet friend Jody had started back blogging. (check her out here)  It was so nice to see how she was doing and to just be able to reconnect and find out what has been going on in her life. (Not to mention I learned how to fry okra :) )  So I have decided to start blogging again.  I know that I love to keep up with what is going on in other peoples lives that I don't see on a regular basis so I am guessing the same is probably true about us.

So here is just a brief recap of 2009:

Got a new/used car (Yukon) and I love it!!, Dawson started having seizures in April, Our foster childs' birthparents signed over their rights (we are just waiting on a court date to be able to adopt him), Dawson was granted a Wish and we traveled to Disney World in May (Thank you sooooo much Make a Wish of SC), Dawson had more intense seizures and had to add more meds, We were denied a Sleepsafe bed for Dawson (we will have a hearing next Wednesday in Columbia to appeal the decision, PRAY LIKE CRAZY THAT THEY APPROVE IT!!  He really needs it.), I had to have a surgical procedure to remove a thickened lining of my uterus (No Cancer, PRAISE THE LORD!!),  We put hardwood floors in Dawson's room and the living room and now Dawson will walk in his walker all over the living room and he will also "crawl" on his back, We got to go to our first SOFT Conference (Trisomy 18) in Virgina and we had an amazing time getting to meet other families that are living with Trisomy 18 (we made great friends with the one family), and even through numerous trials God was faithful to provide!!!

So here we are in 2010, I just turned 34 years old.  Josh and I will be married 13 years in September, Dawson is 4 years old, DJ is 2 years old, Josh is the High School pastor to an amazing group of students at our awesome church, Brookwood.  God has truly blessed us with so much and has been faithful and continues to be faithful in every aspect of our lives.

The journey continues and God is faithful.