Childhood epileptic encephalopathy (Lennox-Gastaut syndrome [LGS]) is a rare and debilitating form of childhood-onset epilepsy. The syndrome is characterized by frequent seizures and multiple seizure types, a resistance to medications or therapies, regression, and an abnormal EEG with generalized slow spike-and-wave discharges. LGS constitutes between 1-4% of pediatric epilepsies and typically appears between the second and sixth year of life.

Friday, April 30, 2010

Bit by Bit


We are writing this blog to keep our friends and family updated on the progress and healing of Michael Jesse.

Michael was born on September 5th, 2006. He joined his two brothers, John (4) and Matthew (2). Michael was a healthy 8.13lbs. baby. He was a typically developing little boy who hit all his milestones on time, started speaking a few words and then, at about 16 months, Michael started to "shiver". The Pediatrician thought that he was probably just feeling his wet diaper and said "no big deal". After two more weeks of the "shivers" that continued to worsen, we knew something was happening. He continued to experience many "shivers" and he began to frequently lose his balance and fall. He was very active but, having had two boys before, I knew something was "not right". His Nana actually caught one of the episodes on video which showed his left arm flying outward for about 1 second. We took the video to our Pediatrician and he immediately told us to see a Neurologist. The wait was three months. What??? We called back and said we would take the first available appointment and were at the office in 2 1/2 months. The wait was an eternity. During the wait, it seemed like Michael was having "shivers" that had now turned into seizures and his falling became almost routine (and a few of the falls resulted in him losing three teeth on three different occasions). He was starting to look like a veteran hockey player and he was barely 18 months old.

The writing of this blog was probably something we should have started when this all happened but, needless to say, it's been a very stressful and scary two years and, with two other very active boys, time to blog was nonexistent. I also want to say thank you to all my friends for all of their understanding and prayers. I appreciate that you understood my need for some isolation and did not take it personally. I appreciate the continued calls even when I did not return them. I love you all.

Today, May 1, 2010 is approximately two years to the day that we first took Michael to see the neurologist. At that time, they did an EEG and an MRI, the results of which confirmed that he was experiencing Myclonic Seizures. At first, the doctors said that he would take an anti-seizure medicine that would probably control the seizures -- like it was "no big deal"; but, by this time I felt like I had been kicked in the stomach and I don't really remember much else that day. It was all a blur. The doctors said the meds would stop the seizures but they did not! The medicine (Lamictal) took 8 weeks to get up to a therapeutic dose (you have to do it slowly so you can watch for a life-threatening rash). But, in the meantime, we saw our little man lose all speech and contact with the world around him. Though still very physically active (though his coordination suffered even more due to the drugs), his cognitive abilities were regressing fast. Where was our little man going?? He did not recognize me, Craig, his brothers or grandparents and his seizures were getting worse and more frequent (up to about 15 a day that we were seeing). It was a very frightening time. I think I called the Neurologist's office every three days and they kept telling me to "just give the meds more time". I was a mess!!! Nothing was working and after the eight weeks time and another medicine (Keppra) added to the mix failed, these doctors referred us to another specialist in Houston who recommended an extended hospital stay so they could perform an EEG on Michael which would continue for four days.

We took Michael to Houston and checked into the hospital; specifically, the EMU (epilepsy monitoring unit). Craig and I stayed with him, of course, in the 8x10 room (cramped and scared). Michael was hooked up to a video EEG (leads glued to his head, and a backpack). He was confined to his room with Craig and me for the entire four days. Because of his age and the fact that the multimillion dollar wireless EEG equipment was not working in the playroom, Michael was not only confined to this room, but also confined to only his crib which consisted of bars on the sides and top. It looked like a cage but it was the best thing for Michael at the time. We wanted answers and we were there to get some -- whatever it took. Poor guy... he was so active, never watched TV, and loved to be outdoors. Craig and I entertained him as much as possible and he was introduced to Barney videos - which helped pass the time.

Leading up to the hospital stay, I had read everything I could get my hands on about Myclonic Epilepsy. I was even muddling through neurology textbooks. There was one syndrome that was very rare and I prayed that this was not what Michael had, but gut instinct told me it was a possibility. After 4 days of monitoring, MEG, MRI, lumbar puncture and many blood draws, the head of Pediatric Neurology came in with her students; (it felt like an episode of House) and told us that Michael was having about 30 seizures a day and, based on his brain wave patterns, he had a textbook case of Lennox Gastaut Syndrome. I started crying and Craig knew that it was not good, by my reaction. Then, they all left and we were left alone with Michael and lots of questions. One of the doctors returned to our room and handed us a one page sheet from an internet site about LGS and said, "LGS is a spectrum and, hopefully, his will be on the mild side". What?? Really?! Are there any experts?. What's next??? How do we help him? At that time we felt totally abandoned.

One thing that was a recurring theme through the process was the realization that we have to be staunch advocates for our children. The doctors see many patients and at times we felt we were "cattle" being herded through the process. Up to this point, other than a few nurses, the compassion we hoped to get from the doctors was non-existent. Many times, the doctors would never really even look at Michael, hold his hand or acknowledge him in any way -- he was just there.

Devastation doesn't even begin to cover the feelings we were having. I just wanted to get back home and out of the hospital. We got home and got our prayer warriors to work. The boys' daily prayers included prayers for the "shivers" to go away and for Michael to find his voice. Our church, grandparents, aunts and uncles, friends, and their bible study groups, all praying for Michael. Craig and I were coming to grips with our situation and realizing that God would not have blessed us with Michael if we were not ready. I'm glad He thought we were ready because we were terrified and lost. What was going to happen?

I think we got mad at the LGS and decided we were going to throw everything but the kitchen sink at it to help Michael as best we could. We started giving Depakote to Michael, in addition to the other medication, and still nothing was working to control the seizures.

We were back in Houston a few months later to start the Ketogenic Diet which was another option they suggested. This was a huge undertaking, but, I was up for it especially since it could CURE or at least help him. The doctors increased the new medicine (Depakote) and we were admitted into the hospital again to start the diet. We were there for three days and then sent home with a handful of recipes, a scale and hope. The diet is high fat and few carbs and is such that every ounce of his food has to be measured to the gram with NO exceptions and we had to use a spatula to get every bit into his mouth. Our two other sons were not allowed to eat goldfish, cheerios, pretzels or any snack food in front of Michael. They were relegated to eat their meals at our kitchen bar so he could not see or get to their food. Over the course of this diet, we never ate together as a family. John and Matthew were troopers and never complained about the extra attention that Michael received. All of their sweet friends were so understanding too. I love those little guys. We managed the Diet for 5 months and though Michael ate like a champ and maintained "Ketosis" (which is what the doctors wanted); unfortunately, the Diet did not work on reducing or controlling his seizures. During this time, Depakote almost sent Michael into liver failure. Nice - he was only 2 years old! What was odd was that his seizures seemed to improve after his near liver failure but this was dismissed by his docs as just a coincidence.

Now we just had to wait and see if he got better and try a few other drug combinations. He was now having about 5-6 seizures a day -- that we were seeing. His liver enzymes improved and they started him on another drug (Topamax) that seemed to help at first, but, within a few weeks, it too lost its effectiveness and the seizures were back and Michael was still not learning. The doctors in Houston were starting to wear me out; especially after I asked them about a new drug for Michael called Banzel that was released in the United States in January 2009 (after 10 years of use in the UK) and was specifically for LGS, they said they had never heard of it and totally dismissed me. (Did I mention you have to be an advocate for your child?)

We came back to Austin and found a new Epileptologist who confirmed Michael's diagnoses, took him off Topamax and Lamictal and put him on Banzel, per my request. Although she had heard of it, Michael was her first prescription for the drug. It was great. He was almost immediately more attentive, smiled more, recognized faces and had fewer seizures. This lasted for about 6 months; then, he regressed again and began having more seizures. During this time, we also had Michael in speech therapy twice a week, ECI came to our home once a week to evaluate Michael and he attended preschool twice a week. We will be forever grateful to the people at Council Oak Preschool who watched over Michael as angels and included him in their program as best they could.

Also, during this entire time, I read everything I could get my hands on which would help Michael to learn and also for me to learn more about his condition. This entire situation was very trying, especially since John and Matthew were now 5 and 7, and also needed love, attention and time. They are the sweetest boys and care very much for Michael. I can honestly say that without our faith, prayer and our families, Craig and I would have lost it. Everyone was and is such great support. I am so blessed to have the best parents, in-laws, my sweet brother, Craig's brother and sister-in-law and, of course, our friends. We have the BEST friends!! Also, Craig's work and the folks he works for have been more than understanding and supportive and that has reduced other stress that could have existed. I thank God for all of you everyday. We really do have a "village" around Michael!

As mentioned before, we have thrown everything at Michael but the kitchen sink. We have tried Neuro-feedback, cranial massage, nutripuncture, speech therapy, OT and Equine-Therapy at the R.O.C.K. All of these therapies were supposed to help and we have met some wonderfully helpful people, but the reality was that none of this was helping Michael to learn. We even looked into off-shore stem cell therapy (which is a HUGE farce as it relates to neurological illnesses and probably most other illnesses). I was corresponding with one lady who said her child "was cured" using stem cell therapy. This, of course, got us excited and hopeful; but, thankfully, our Uncle Jesse (Michael's namesake) talked to a few of his doctor friends and informed us of what a scam it was. Phew... The lady that I corresponded with has since taken down her blog and will not return emails. uummmmm...

Craig writes: As a side editorial, we hope the people and companies (MEDRA for one) selling these "stem cell cure alls" all rot in hell for preying on desperate and innocent families looking for hope for their kids and loved ones. Those are some bad, evil people. Be wary!

We had to find a way to stop the seizures before Michael could begin to learn. We went in for a check up with our Epileptologist and she wanted to start Michael on another drug (Felbamate) which is black boxed and/or another one possible drug. The doctor was leaving it up to us. I was floored and angry. Isn't that her job? What do we know about picking a drug for our child? I can only do so much research and when you look at the drugs for epilepsy, it is not pretty. Which is the lesser of two evils?? I was so frustrated because this doctor was putting a band aid on a monster wound. No one was looking for the cause. We had to realize that none of the Neurologists knew anything about this syndrome, except how to diagnose it. No cures, only prescriptions of symptom masking hard core drugs. At the end of the day, at least our experience has been, these Neurologists, beyond their fancy equipment for diagnoses, were merely prescription drug dealers.

We were getting desperate. Michael is only three years old and the doctor only has two more drugs in her bag of tricks to try.? It is also disheartening because I had read that if the first drug did not work there was only a 10-15 % chance that any subsequent drugs would work either -- no matter the drug, and the percentages went down from there.

Through this entire ordeal, we never asked "why us" or "why him". We knew God had a plan and we were just trying to navigate the way He would want. We put our trust in God. He will take care of Michael and us and He would not have blessed us with Michael, as He had blessed us with our other two boys, John and Matthew, if Craig and I were not ready or able to care for him.

A few friends had told us about the NeuroSensory Center and we thought, what the heck, it was here in Austin and we'd heard nothing but good things about it -- it couldn't hurt. Thank you Cory and Natalie. Their kiddos were seeing him for Autism and other developmental delays and had seen tremendous results. I emailed the Center and told them about Michael. They emailed back and asked a few questions and then said, yes, we think we can help him. We went in to see Dr. Kendal Stewart in October 2009 and they ran a series of non-invasive tests that look at a person's neuro sensory system; they studied Michael's history and tried to go back to the source of when the seizures started. In short, these doctors went back to when the seizures began and asked, "why did they start in the first place?". This group's practice consists of treating viruses in the inner ear. Michael's issues began after a series of vaccinations and it was conceivable that one or more of the viruses had taken up residence in Michael's inner ear and was causing all this havoc. Dr. Stewart and his local partner Dr. Taylor were the FIRST doctors throughout this entire ordeal that acted as though they could help and make Michael better (and not simply mask symptoms). These guys appeared very confident and acted like they understood what was going on with Michael. Had we found our angel here on earth for Michael? (and he was working in Austin less than 1/4 of a mile from Craig's Austin office?). Craig and I were cautiously optimistic. Something about these doctors was different than all others we'd met with. Even at the first visit we got the immediate sense they cared and wanted to help Michael as much as we did. WOW.

From that first visit they started him on several antiviral medication staged in over the next several weeks. We also started giving Michael a B12, B6 and Folate injection,magnesium, immune spray, Vitamin D drops and a multivitamin. Dr. Stewart also cautioned that Michael's condition might get worse before it got better but he explained why and what was going on in Michael's head. This guy was walking us down a path and we trusted him. Michael's seizures did get worse and we got even more scared and concerned. In February, he started to experience Tonic-Clonic seizures (grand mal) and our Neurologist said we should consider a VNS implant which is, in simplified terms, a pace maker for the brain.

Craig and I discussed this and decided to consult with Dr. Stewart. For a doctor who is in high demand and hard to get in to see, he requested Craig to come in to his office the very next day. Craig did and Dr. Stewart said he did not think Michael was a good candidate for the VNS and asked us to give Michael until the summer to continue on anti-viral pass and suggested that Michael not undergo the surgery. We had been seeing progress in other areas (focus, cognition, awareness) in Michael so we followed Dr. Stewart's advice and punted on the surgery. Dr. Stewart reiterated that with issues like Michael's. there is no quick fix and he was running a marathon not a sprint but he (Michael) was stilling running the race and improving (bit by bit). It was not too long after that visit with Dr. Stewart where Michael experienced 4 seizure free days; then 1 seizure; 4 more days without a seizure and then 2 small seizures; and then, 11 days without a seizure -- then just a couple of shudders. Now, on May 10, 2010, Michael has gone 30 days without a seizure. Wow - GOD IS GREAT and prayer is POWERFUL! Since he initially started having "shivers", he has not had even one single day of relief with anywhere from 2-30 seizures a day. So, today, we celebrate any and all seizure free days. We pray and ask you to pray for continued healing and learning for Michael and also to pray for Dr. Kendal Stewart that God will continue to give him the wisdom, patience and insight so that he can continue to help Michael and all the other lives he and his team touches. In our eyes, God is healing Michael through this man. Very powerful stuff!

Thanks for reading this far. I know it was long but wanted to cram 2 years of this into the 1st post. Now you are up to speed!

We will continue to update everyone on Michael's progress.

7 comments:

Sophie's Story by Elaine said...

I wholeheartedly believe in alternative treatments. It is wonderful that you found Dr. Stewart. It breaks my heart to read all that you all have been through and the lack of support from the neuros. But that has been my experience also. I hope you get to keep counting those seizure-free days!!!

Elaine

Terri T. said...

What a journey this has been for your family, Susan. You and Craig and all three of your sweet boys have shown incredible strength, courage and persistence. I know you won't ever give up. It seems like you are on the right road. Don't ever forget that there's an army of friends and family who are behind you and love you.
I look forward to following your blog!

Terri T.
(Love that precious photo of Michael. What a cutie!)

mbc said...

So happy that you are documenting this journey. For you, and for others. Go Michael Go...thank you, God!

Faith said...

Susan, that is the most amazing and touching story about Michael. The hard work, devotion and dedication of you and Craig to hang in there and search and search until you found what is right for Michael..that is absolutely wonderful that he has gone 30 days w/o a seizure and hopefully this is the big turning point you have been praying for. Its a wonderful blog
Faith

Wayne & Judy said...

My heart soars each time I read your posts. Michael has such a special spot in my heart and I think of him often. Thank you so much for posting the blog. I feel connected to him through it. My prays are always with all of you.

Judy J.

Steffani said...

Wow. I read your story and felt like I was almost reading about my daughter. At 2 and a half, she randomly started having seizures and was diagnosed LGS. She was having drops so bad we ended up having to get her a helmet. Her poor body looked like she'd been through WW3, cuts bruises, etc. I felt bad that her most used word was "boo boo". She was on Phenobarb, Keppra and Banzel. Then, six weeks ago, everything just stopped. No drops, no myclonics, no nothing. And she's come back to us and is acting like a normal child. I agree, amen and praise the lord. Each day they wake up and don't have a seizure is an amazing day right now. I wish you and your family much luck.

Anonymous said...

I am so excited to have run across this blog! My son Jase was diagnosed with LGS in 2008 at the age of 9 following an EEG . We were devastated but God is amazing and answered our prayers in April of 2013 when an EEG showed that he no longer had the reading that
S required for an LGS diagnosis! He continues to have mild myoclonus episodes and takes a small amount of Banzel and Topomax. So thankful to read about God's miracles occurring elsewhere!