Since our most recent visit with Dr. Stewart, Levi has been nearly seizure free.
At the first visit and after some blood work, we started Levi on supplements and medication.
This latest visit we added another medication.
Levi is still on the Onfi and Trileptal, but in addition he is taking:
Neuro Immune Stabilizer Topical Cream - 1 pump, twice a day
Leucovorin Tab 5 mg - 1 tab twice a day
Acyclovir 200 mg - 1 capsule a day (we will be discontinuing this soon)
Pregnenolone 15 mg - 1 capsule a day (blood work showed that he was very low)
Low Dose Naltrexone HCL 3 mg - 1 cap a day
The Naltrexone was the most recent medication prescribed, on Feb. 24th, and since beginning that Levi’s seizures reduced dramatically. He stopped having seizures completely for 2 weeks but did have 2 auras. On March 8th he started to come down with a cold, and this caused seizures for 4 days. Since March 12th, we have not seen any seizures again and Levi has not had any auras since.
As he continues to be seizure free, we may switch his actual seizure medicine to a less hindering (cognitively) medication.
It has been a blessing to find a doctor that is willing to help treat Levi from the inside out.
We no longer have surgery as an option on our radar!
When we left the EEG his doctor added another medication for Levi.
He was on Trileptal and they added Keppra. We really hoped that this would help control Levi's seizures but we saw no improvement.
We went to the follow up appointment for Levi's testing/extended EEG and told his doctor this. She felt confident that we would not find seizure control quickly with medications and highly recommended a tuber resection surgery. This is the surgery that Jace had back in 2011. Talk about having an old wound ripped back open. As grateful we are that Jace was able to have that surgery and how well he has done since, it was still the most difficult thing we have faced.
The doctor still wants a MEG scan done for Levi. This will pin point the focal point of the seizure activity much more than just an EEG. With the information from this test, Dr. Von Allmen can take this to a board of doctors and conference over the best plan of action. This mean they would discuss what type of surgery he would need: grid placement and resection (what Jace had), just a resection, laser ablation, or if he would not be a surgical candidate at all.
Until we get the MEG scan done, the doctors meet, and we meet with the neurosurgeon she added a 3rd medication, Onfi, to attempt. All this medication roller coaster is just a guessing game. It frustrating and no fun! The side effects are always terrible, no matter the type or dose. She is pretty confident that the added medication won't help but she said its worth a try during the time of waiting for testings and decisions on surgery.
So, we added that 3rd medication. Its taken 3 times a day and its a "sedative". At the start of the medication it did the complete opposite! WOW! Levi was a busy bee with a mean streak! It took 3 weeks to tritrate up to his full dose. Once we reached that I decided (per the doctor's suggestion at his last appointment) to wean him off the Keppra. The Keppra did nothing for him besides make him mean. Adding the 3rd medicine, Onfi, just amplified that. We couldn't handle the mood swings, screaming, fighting, and flat out defiance. Our sweet boy was gone. Don't get me wrong, he still had his moments but living with him was NOT fun anymore. And we started this medication right at Christmas break......that meant being home with him 24/7.....sounds fun huh?
We haven't seen much change in his seizures, they aren't worsening, but they aren't better. We did find out that he had a sinus and ear infection. That didn't help his seizure threshold at all. Now that we have treated that, we still have had seizures.
As scary as all this has been, having to face it all over again, we are calm. We know what to expect and we know if surgery is needed that it has worked before and should work for Levi. God has seen us through all this before, HE hasn't left us this time either.
Justin's brother told us about a doctor that could help Levi by treating the root of the issues. Knowing that Nathan is a very talented and smart man that knows about treating the body naturally, we took his advice. He helped us get Levi an appointment with Dr. Kendal Stewart at Neurosensory Center in Austin. Since this is more along the lines of alternative medication, insurance does not cover everything. It will cover some of the lab tests and the prescriptions that he suggests, but not the most important supplements/vitamins. Even though going here was not cheap, it was well worth it!
We learned so much about how we can help Levi with his seizures from the very molecular level. Learning what we did at the appointment also opened out eyes to how much this can help Jace as well. Once we get Levi squared away we plan to bring Jace as well.
Dr. Stewart explained to us about how our bodies require a process called methylation. Most everyone has a deficiency in this and it can wreak havoc on the body. Explaining this in terms easy to understand seems to be difficult after looking for a link to include that explains it.
Dr. Stewart asked us to give him 60 days to get Levi on these vitamins to help increase his seizure threshold. He explained that epilepsy is generally an inflammatory disease - there are other factors of course. Areas of the brain has inflammation and that is what triggers the neurons to misfire thus causing a seizure. Most inflammation that occurs in the body, especially in nervous system, are due to the deficiency of T-cells which stems from methylation deficiency.
To help with this process certain vitamins are used. However, most vitamins are water soluble and the nervous system is covered in fat. Water and fat don't mix so there needs to be a way to convert these vitamins to get into the areas necessary. That's where Dr. Stewart helps. Taking the vitamins orally is difficult since these vitamins are nasty smelling and tasting and most of them are broken down by digestive processes, so that method is out. They can be given by injection but it would have to be given twice a day but no one would be thrilled about that - especially Levi. Thankfully Dr. Stewart found that transdermal application was effective...... and he was able to make this lotion smell good.
I feel like I am rambling......I have learned so much at the appointment and after researching more I am starting to have a lot of A-HA moments!
For the time being we are going to see how the protocol Dr. Stewart suggested goes.
Levi will be taking: an antiviral to help balance out his immune system again, a prescription vitamin that provide high amounts of folic acid, and the vitamin lotion to provide the needed vitamins and to help his body convert the vitamins to get into the nervous system.
We were warned that the antiviral medication after about 3 days, if he does have issues with a T-Cell and B-Cell balance, would increase his seizures for a couple days since the threshold would be lowered. So far today was a rough day with seizures and it has been 3 days since we started the antiviral. I am hoping after a couple days the seizures stop and they do nothing but improve from there! Oh what a blessing it would be to be able to treat the nasty seizures from the root, with natural sources and temporary use of an antiviral, instead of cutting part of his brain out or taking anti-epileptics for life.
I am including a YouTube video of Dr. Stewart explaining the Methylation process and the neuro-immune stabilizer lotion.
I highly recommend everyone to check into Methylation deficiency issues as SO many are impacted by it and don't know. Here is an article I came across that seems to explain more than I ever could. Methylation Deficiency - Beyond the MTHFR
If you want to find out if you have any type of methylation deficiency and you are able to travel to Austin then its worth making an appointment with Dr. Kendal Stewart. NeuroSensory Center
Please pray for Levi and us as we attempt to get to the root of the seizures and fix this.
We know from the past that the shorter your hair can be for the extended EEG the better!
JB went ahead and took care of the hair cut at home.....he did a really good job!
Levi and I checked in on Monday at 8 am to start his EEG stay. The stay was scheduled from Monday to Friday. Depending on the information the doctor gets, how quickly she gets it, and how different each seizure appears depends on how soon he is discharged.
Technically this testing is Phase 1 for tuber resection surgery. We are not considering the surgery option even remotely yet. We are praying and having faith that Levi's seizures can be controlled with medications and he will outgrow them quickly and going on to be without medication one day.
However, having this early information of finding the location of the origination of the seizure helps should medication fail. We learned with Jace that as seizures progress they can go from very focal (one spot in the brain) to generalized (all over the brain) making it hard to find the spot that is the true culprit without more invasive tests. That was one of that main reasons we had to do grid placement on Jace before they removed the suspected tuber.
Ready to check in for the week!
Waiting for the EEG techs to come hook him up he asked to watch TV.....and it was Golf he chose to watch. SO much like his daddy!
Levi was so brave getting the "stickers" on his head. I was worried we would have to papoose him like we had to Jace. He wasn't scared of the air they have to blow for the glue to dry and he laid there nicely for Mr. Luis.
Such a little trooper!
I can not say enough good things about the pedi EMU! Everyone we encountered was so refreshing. I think these people actually like their jobs - talk about making a difference in the care received!
Mr. Luis was great at getting the EEG hooked up for Levi. Those two became buddies over the stay!
Our day nurse was Ms. Claire. She had the cutest English accent and was so good with Levi. He listened to her and she was able to convince him to do everything necessary - even get his IV.
She is a one of a kind nurse for sure!
All hooked up and holding his "Topper"
I was dreading having to occupy Levi in a little hospital room for more than 1 day but come to find out they have the ability to allow EMU patients to play in the huge playroom now!
They have a wireless box for the EEG and a camera in the playroom. We spent a lot of time in there.
That is how Levi and Mr. Luis became such buddies. Ms. Claire would have Levi call Mr. Luis to come hook him up the playroom set up. Levi would kindly ask "Please play in the playroom please?" and Mr. Luis always came right away.
We were able to pass some time visiting with my BFF Diana! She works in the hospital too and stopped by during her breaks. I love seeing her!
She made the stay much more bearable for the both of us. She gave Levi a Spider Man stuffed ball - talk about genius! He loves to play catch and this was big enough to catch with his IV in and soft enough to not hurt anything or anyone. Plus she totally spoiled me with a Starbucks coffee :)
We had a lot of playroom time, visiting with Diana, and snuggling!
The iPad and TV were great for waiting for his food to get to the room or falling asleep at night lol
He is such a mover!
We did FaceTime a few people........Jace and Levi really missed each other and loved being able to see each other and talk.
The first night the dr asked for Levi to be sleep deprived. He had been up early that morning and then didn't nap at all........then they wanted me to try to keep him awake as late as possible (I think they said midnight was their "goal") Despite getting a huge car track mat to play on, Levi could only make it to 10 pm. They said that was pretty good since he was only 3 years old and used to going to sleep around 8.
Toys and Food = Happy Boy
The next day we were given a huge basket from a ministry called "Baskets of Hope"
There were so many toys and goodies in there for Levi and me. What an amazing ministry!
That basket helped keep Levi happy at the hospital and will give him fun for long after the stay.
He wanted to color and he started to write "L's"! I was so excited! He is going to pick up on the writing quickly I am sure!
Back to the play room to work on his basketball and puzzle skills :)
Today again I was told to sleep deprive Levi.
It was pretty difficult to do! He was getting SO sleepy!!
To get Levi's mind off sleeping I got him up and practicing his letters.
I am impressed with is tracing!
Tuesday night we were allowed to go to sleep normally. It still took him a bit to fall asleep but when he did, he was out!
Wednesday we were given the news that we get to be discharged!!! YAY!
First they wanted to give him his new medication via IV. After trying they noticed his IV was kinked. While trying to fix the IV it came out. They managed to start another on his other hand but he was so upset that before they could fully tape the IV down he pulled his hand back and it came out too! UGH! Poor guy was so upset!
Thankfully the doctor said he could take the loading dose orally! No more pokes!
He was so ready to go home! He laid still to get the leads removed by Mr. Luis and we were out of there!
So far, the increase in his Trileptal and the addition of Keppra has control his seizures.
With the change in seasons from summer to fall comes less sweltering weather!
With the nicer weather comes the ability to really enjoy the outdoors.
Levi has been my little buddy/helper lately. He has been my jogging buddy......
we run to the parks around the neighborhood. It gives me breaks between runs but it doesn't help me increase my endurance for distance in my runs.
And best of all, Levi has been my laundry "helper"
As athletic and fearless Levi has been from the very start, we thought he would pick up the Strider bike quickly. As soon as he was able to walk well I have given him chances to learn to ride it. He always freaked out and didn't want to try to walk more than 2 steps.
Fast forward to earlier this month.....Levi went into the garage and started to test the bike out by himself. He was so proud that he was able to ride it!
We tweaked the seat height and handlebars and he was off! It took a day or two for him to really get confident on it but he was determined. Riding his bike was all he wanted to do!
Fall also brings football season!
We love to go to see Texas play so when we get the chance we jump on it!
We went to the Texas vs. Cal game....
What an exciting yet disappointing game we chose to go to.
We watched the LHN pregame broadcast live. Wish we were able to get to talk to Vince Young but he was quickly carted away to the game right after the show.
After the one point loss thanks to the kicker, Nick Rose......we started to teach the boys how to kick a football! LOL They didn't too bad! They could probably walk on to Texas and the team not be off any worse..... I kid! LOL
As Levi has been a "helper", he has also been a handful!
Popsicles, chewing gum, sitting on the table, and milk are some of his favorite things right now..... along with doing things "by myself"
Levi finds more independence and Jace finds his silly side!
He was lifting his 4 wheeler like a strong man......
then dancing silly while driving the 4 wheeler! LOL
This kid is so fun!
Jace can be silly but he is always sweet!
I love that he thinks I am his superpower! :)
On May 23rd my Mimi passed away. She donated her body to medical research so a celebration of life was scheduled for a time when most people would be able to attend.
The memorial was September 26th and what a celebration it was.
Doves were released, stories were shared, and family was reunited.
I miss my Mimi so very much! Being the mother of 7 children she was the portrait of patience, love, and grace.
Fall pictures came up really quick at school! It was far too warm for Jace to wear true fall clothes so we made due with what we could. Jace is one handsome little boy!
We went to Levi's doctor appointment with the epileptologist on the 29th.
They started him on trileptal and want to schedule a longer EEG. Since the routine EEG didn't catch a seizure they want to be sure to see where and how it begins in his brain.
We do not have that scheduled yet but we have started his medicine. We are increasing the dose over 3 weeks to slowly reach his dose for his body weight.
So far he has not had a seizure since Friday, Oct 2nd. and we pray he continues to be seizure free.
Please continue to pray along with us that we do not have to get on the medication roller coaster and this one medicine remains to be the answer for him.
