Epilepsy study reports...

Well we made it home. This was one of the most challenging and frustrating weeks of my life. I was hoping to come back with tons of encouraging news. I have tons of news. I don't know how encouraged we feel by it. As always, I am going to do my best to relay this information to you in a way you can understand what's going on with Braydon. It's a lot to take in, even more to reiterate it.

Since Braydon began having seizures on January 1, 2010. We have been seeing his neurologist at MD Anderson Cancer Center for the treatment of these seizures. Based on the EEG and MRI reports done there, we knew he was having seizures...PETIT MAL SEIZURES was his actual diagnosis (click on link to read more about these). His neurologist had suggested and we have tried with no success three different seizure medications. Two of these medications showed no improvement with moderate to severe side effects. The third medication we tried had very mild side effects and after a few months we saw a decrease in seizure activity. Thinking we had found the medicine that would work for him, we increased the dosage. With no more decrease in seizures we increased the dosage a second time. Lab results showed a toxic medication level in his body, so we were forced to cease usage of that medication as well. Thinking that medicine was responsible for the only decrease in seizures we had seen over the last 11 months, we feared the seizure activity would increase after we stopped giving him the meds. To our surprise, the seizure activity stayed the same (1-2 seizures a day). Turns out, the Depakote was not responsible for the decrease in seizures-God was!

The percentage of epilepsy patients that don't respond by the third medication is low...about 25%. Because of this, his neurologist wanted him to see an Epileptologist, Dr. Gretchen VonAllmen at Hermann Hospital in Houston. She scheduled us for an admission that would last 5 days for an epilepsy study. 24 hr. video monitoring and EEG monitoring took place for 4 days along with a MEG scan and MRI. Based on what she saw through video and EEG and what her nurses witnessed during the seizures (every time he had a seizure I had to hit an alarm and 1-4 nurses would literally run into the room and start taking notes, asking Braydon questions, and checking him out-yes even in the middle of the night :)) she gave us her diagnosis and recommendations for treatment.

The diagnosis is Atonic seizures (or drop seizures). This is a completely different diagnosis than we got from his neurologist??? (We now wonder if we should get a third opinion.) Dr. Von Allmen's recommendation for treatment is yet another medication called BanZel. This is a newer medication (only approved by the FDA 2 years ago.) I told her we would research the medication, pray about it and let her know sometime this week. We needed this time because we had no peace about the treatment she was suggesting.

So now we are left to make the decision of whether or not to give him another medication that has it's own side effects and risks. And like most seizure medications, because it is a mind and mood altering drug, he will most likely not feel like "himself" on it. That was our biggest concern and dislike with the other medications was that Braydon was not himself most of the time. He was tired, sluggish, no sparkle in his eyes, irritable, etc. That is not the Braydon we want to see every day! And we sure don't want him feeling bad every day.

I asked Dr. Von Allmen if NOT treating the seizures was an option. I mean he usually has one seizure a day and it is usually first thing in the morning. So outside of the first 20-30 minutes of his day, he seems virtually unaffected by the seizures. He carries on normally during play, schoolwork, chores, social situations, etc. So if this is not affecting his quality of life, can we just not treat it, that way he doesn't have to feel bad and deal with potentially harmful side effects from medications. Her answer was we could but she doesn't recommend it because if untreated the seizures could potentially get worse or change in nature and frequency. But by talking with her and with mom's of other epilepsy patients, I've learned that that can happen even while on medication(s).

I also asked that if we decided to try this medication and it didn't work where does that leave us. She mentioned another medication that she thought might work...Felbatol. I know and have read enough about this potentially dangerous medication that I would never even give it a try with Braydon. (Click on link and read info on the drug if interested in what I mean.) And if that didn't work her suggestion was VNS surgery. VNS (Vagus nerve stimulation) is designed to prevent seizures by sending regular, mild pulses of electrical energy to the brain via the vagus nerve. These pulses are supplied by a device something like a pacemaker. The VNS device is sometimes referred to as a "pacemaker for the brain." It is placed under the skin on the chest wall and a wire runs from it to the vagus nerve in the neck.


While I'm not saying this is not an option at some point in the future. I think mentioning it after only 11 months of seizures that we have been told he could potentially grow out of was a little premature. And again we feel very strongly that if his quality of life is great (better than it's been in a while actually) why would we do any of these things to him. We just really feel God is telling us "no" on all of these things and to patiently wait on HIM right now.

We are leaning most towards a third opinion before we do anything. We feel like God is guiding us and leading us in the right way and feel that He may have already lead us to a doctor at an epilepsy center in Laredo, Tx. We don't know really. We are just pressing in and praying and hoping at this point. We need lots of prayer right now to make the right decisions and there is alot to think about here. Please be in prayer with our family most importantly for healing for Braydon. Medical intervention I know is sometimes necessary and we believer that God sometimes uses that to heal people and restore health, but we are a little partial to miracles because we have seen them first hand, so our prayer is that healing comes through medicine or miracle...preferably the latter. Also we need prayer as his parents to make the best possible decision for him in ALL areas but especially medically. I will keep you updated as things happen. Thank you all for your prayers and love you show our family.

December 6th...

December the 6th is a special day. It was the day we were given our first gift from God. The person from whom we would learn the most from in our lives. Who would change our lives forever and then change them again. We have been so blessed by Braydon over the last 8 years and we look forward to so many more with him. Happy
8th birthday to one of the two greatest boys ever!

On Saturday Braydon had his birthday party. This year we had a snake party! With LIVE SNAKES! The Creature Teacher brought 6 of her coolest animals and did a 30 minute show for Braydon and about 25 of his best friends. This is my son TOUCHING A SNAKE!!! Agh!




This is the snake cake I made him. Cakes are not my specialty (to say the very least) but he loved it and that's all that matters!


Today on Braydon's 8th birthday-he and I are getting in the car and driving to Houston to spend the next 6 days in the hospital for an epilepsy study. Please pray that all goes well and we will know more about his condition when we return. Full update with GREAT reports in a week.

Happy Thanksgiving...

We have so much to be thankful for. I don't even know where to begin. Braydon is still having only one seizure a day and he is off all medication. Our kids are happy and healthy and want for nothing. My husband has a great job that allows me to stay home and take care of our boys. Our home is warm. Our bellies are full. Our families are near. We are so thankful.

This year we mixed things up a bit. Because my husband has to work Thanksgiving evening but was off today...we celebrated our Thanksgiving on Wednesday instead of Thursday. So I cooked a full traditional thanksgiving meal for just the 4 of us. And we stayed home all day, enjoyed great food and put up our Christmas decorations. Although we broke tradition, we set a new one. As much as I love seeing all of our family on the holidays, we chose not to run around like mad trying to see everyone but to stay home, just the four of us and have a nice intimate family day. It was WONDERFUL. For that I am thankful. Enjoy the pics!


And we had our own Thanksgiving Day Parade! It went right in front of our house! LOL.

When it rains it pours...

Blessings that is!!! When God rains down blessings on our family he makes sure we know it! Not only is Braydon having only one seizure a day with NO SEIZURE MEDS. He has felt so good and been such a joy the last four days. The first two days off the Depakote we noticed Braydon was extremely wild and hyperactive. He was a little out of control and Jacoby and I couldn't figure out what exactly was going on with him. Concerns over his ADHD diagnosis from a year ago began to creep in and confusion set in as to why it was so prevalent all of a sudden. Then while Braydon was helping me cook breakfast Thursday morning there was a moment of eye contact between us and it just clicked with me what was going on. "This" was the real Braydon. Sadly, it had been so long since we had seen him off medication that we had forgotten that this hyperactive, wild, loud little boy is who he really is. It made me laugh and cry at the same time. It's so good to have him back!!! There is a sparkle in his eye and an excitement in his smile this week that I haven't seen in a very long time.

\o/ PRAISE THE LORD \o/

Psalm 126:3 "The Lord has done great things for us and we are filled with joy"

Medical update on Braydon

I'm going to attempt to relay all of this information the best way I can. When you have three medical conditions and 4 different doctors things get complicated and hard to explain but I'll do my best.

We just got back from Houston for follow up visits with Braydon's oncologist and neurologist. Everything went well. Braydon's lab work and physicals went great. One doctor commented that outside of the seizures now, Braydon is "healthy as a horse"! We did do an EEG to see what the current seizure activity looks like and it looked "about the same" as the last one, which was done three months ago. However Braydon is having less seizures than he was three months ago. He is now down to one seizure a day. This is so great considering there was a time that he was having 6-10 a day. Although we are so thankful for less seizures, our goal is ultimately NO seizures!

We have been unsuccessful this far and finding the treatment that will cease all seizure activity. We have tried 3 medications so far....Keppra, Tripletal and Depakote. We have seen the most results since starting the Depakote but we knew he was on a pretty high dose and we were still seeing at least one seizure a day.

On a recent visit to Braydon's homeopathic doctor we discovered through lab work that his medication level for the Depakote was too high. It should never be over 100 and it was 136. We reduced the dosage and checked the level again in four weeks. That time the level was even higher....147. So I spoke with Braydon's doctors at MD Anderson and we decided that since the medication is only helping somewhat and not completely alleviating the seizures, we should start weening him off the medicine completely. This took a full week to do. He is now taking NO SEIZURE MEDS. The best part is...the seizures did NOT increase when we stopped the medicine. He is still only having one seizure a day even without meds. THIS IS A MAJOR PRAISE!!! This means that the decrease in seizures was not due to the Depakote but another miracle!

We are seeing an epileptologist the 2nd week of December and will be admitted into Hermann Hospital in Houston for 5 days for Braydon to undergo an epilepsy study. This will hopefully give the doctors more insight as to why there have been so many inconsistencies and rarities on Braydon's EEG reports and hopefully aid in finding the right "treatment" for the seizures. In his neurologist's words: "to say Braydon's seizures and the information surrounding them have been rare is an understatement". So....we are on to our next journey in hopes to find answers soon. Right now our biggest concern with the study is the fact that I will be with Braydon and away from Deacon for the five days. That is going to be so hard. I seriously will need prayer about that. But I know Braydon needs me more at that time. Jacoby will be home with Deacon.

As if that is not enough to have going on medically, there is one more thing we are addressing with Braydon at this time. On another visit to Braydon's homeopathic doctor, we did some extensive lab work that showed toxins in Braydon's blood. To determine what they are we did a metals test. The report showed that Braydon has too high of levels on three different metals, two of which are toxic. Two of them are also related to contrast and machinery used in medical testing. (No suprise there). He has had about 30 MRI's. We are now doing Kelation therapy to try and rid his body of the toxins and metals that were present. We are traveling to Rowlett twice a month for these treatments. We will do this for 60 weeks. :-)

We appreciate your prayers on all of this and we thank you for continuing to care about and follow our family! We love each of you!

Something to share...

Last week I gave my testimony in front of about 200 women at CBS in Sulphur Springs. Click on "Devotional- November 10th". There you will be able to listen to what I shared. Hoping the story of what God has done in my life will bless someone and give glory to Him for all he has done.

***FULL MEDICAL UPDATE FOR BRAYDON WILL BE POSTED TOMORROW. THANKS! :-)***

Our Family...

New Life...

This past Sunday our family celebrated a new beginning for Braydon. He accepted Christ as his Saviour on August 15th of this year and was baptized by his dad on October 10th. He along with 5 of his best friends were baptized and we had a great celebration to follow. My mom, dad, sister, 2 neices, a nephew, my father-in-law and my best friend and her family were there to celebrate it with us. Enjoy the pics!

The latest with Braydon...

I haven't given a medical update in a while and I know everyone is wondering what is going on....it's a lot of information but all very interesting. Braydon hasn't seen his neurologist at MD Anderson in two months. For the most part things have been pretty uneventful. He is still on the same medicatin (Depakote) and his seizures are less frequent than in the past but not gone. Right now we are in a time of seeking "alternative treatments" (i.e. non-precription drugs/treatment).

After more research and meeting with and talking to more doctors, we have come to the conclusion that the Ketogenic diet is probably not the best option for him. While his condition is serious (seizures for 11 months with unsuccesful treatment by at least three different anti-seizure medications-only 24% of all seizure patients don't respond to medication by the third one), his condition might not be serious enough for that diet in particular. The diet is so extreme, any doctor hates to see us try it because it is hard. And a three year committment. If he was having convulsive seizures and the medication side effects were severe in nature then they would have us go for it, but praise the Lord this is not the case!

We have also been to see a homeopathic doctor in Rowlett that we really like. We did some in depth blood and urine tests at that office that showed us (literally showed us on a screen-we got to see all of Braydon's cells and blood through a microscope and have it all explained to us). His cells are healthy and normal but he has a large amount of toxins in his body. That's not that surprising with what all medications and the amount of meds he has had. We have started Kelation pushes to help the body rid itself of toxins and also doing several supplements and diet changes to get the body as healthy as it can be. We are also testing for gluten sensitivity and doing a metals test. We don't have a lot of answers yet, but we feel like we are on the right track. We do know that since we have changed his diet and started the supplements we are seeing the least amount of seizures we have ever seen. We started th Depakote and saw a decrese (lowest was 3-4 a day) and since the supplements and diet changes we are now down to two a day!!! PTL!

An ingredient check on the Depakote revealed that the medicine is made with heavy metals and the same key component that makes anti-freeze. That is scary. Our goal is to continue to get the body healthy and the seizures gone so we can start weaning him off this dangerous poisonous medicine he is having to take. It's not time yet. But that is the goal! Keep us in your prayers...especially Braydon's body and health.

A great date...

We went out this past weekend with some friends of ours, Jason and Diane Barnes, and had the best time. We went to an outdoor concert, a steakhouse and a butter factory. YES a butter factory! Jacoby took us on a tour of his company. He has worked there 8 years and I've never even walked in the building so it was a real treat to me to see how it all works. We had to get suited up in our hair nets, safety glasses, lab coats and all! Best time I have had in a while! Definitly not the outdone dinner and a movie date! Enjoy the pics!