Getting to the Root of the Issue

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.

Thank you!