Elijah left the hospital on the ketogenic diet but was continuously having seizures throughout the day and night. He would experience the different kinds in waves. For about 2 weeks he'd have clonic-tonics, then myoclonic seizures for the next couple of weeks, then drops, then absences. And then he'd experience a few days of clarity. Just a few. The longest span we ever saw of no seizure activity was two groupings of 12 days. It was coinceditally 12 days both times. The first 12 was following up to his birthday. Prior to his birthday we had found out through food sensitivity testing that Elijah was sensitive to wheat, gluten, dairy, and eggs so we removed these from his diet. At the same time though, we made the mistake of making another change. We upped his keto diet from the 3.5:1 ratio to the 4:1 ratio. This means for every 3.5 grams of fat he got 1 gram protein in that one meal. Yes, we had to measure every single gram that went into this kiddos mouth. To say this was exhausting is to say the least. It was stressful. Mentally and physically. Every morning we'd awake we'd have to get out all of his ingredients, measure each on the scale, prepare and serve/feed. We were constantly worried we'd mis-measure or if he wouldn't finish every bite we were worried the diet wouldn't take effect in his body. It was a disaster.
So we upped his fat since our dietician told us some children have better control at a higher ratio and we had not seen any control yet. The day we made this change of ratio and sensitivity changes, Elijah's seizures disappeared. Until his birthday. His Dad connected the seizure freedom to the removal of these foods and was confident in making him a paleo birthday cake. His Dad was simply wanting to please him son after having such a hard past couple of months but unfortunately this was too much of a shock to his system and the next day, on July 12th Elijah started to have tonic-clonics again. I still remember clearly the moment he was sitting on the couch watching tv and Anthony yelled to me that Elijah was having a seizure. In my head I thought, "No way! This can't be happening!" But it was. Elijah's seizures progressively got worse and closer in time. When relying on rescue meds, one is suppose to give a rescue med if they are within an hour apart from each other and Elijah's were that close. Jeff gave rescue meds and his seizures got worse. They began to be every 10 minutes. Jeff jumped in his car with Eli in tow and took him back to the children's hospital to be admitted at around 10 p.m. The feeling that this was all happening again is undescribable. The only way I can describe it is a deep, dark, feeling of loneliness. We felt so alone and unguided at this time. I was able to get a friend to watch the other children so I could meet them at the hospital. They administered Ativan, a rescue med and within about 2 days his seizures began to decrease but he was a zombie. They soon discharged us with him drugged up and unable to walk. They told us the diet should be able to take back over and he should only improve. They also said that if his seizure come rearing back, that we should give a 3 day taper of a rescue med and that should work at home and not to worry coming back. So we took him home and made appointments with his nautropathic doctor in the area (who he had seen 1 time before) and with a chiropractor who was known for being cured from seizures by a chiropractor and that was his reasoning for becoming one himself. Sounds romantic, right? We knew deep down we needed to find a different kind of support. A more theraputic doctor who knew how to build the body up rather than tear it down with chemicals and these nasty drugs that made our son lifeless.
I'll never forgot the look of sadness and hopelessness from the nautropath. He did not know what to do and simply gave us supplements based on past blood work taken. He had no experience in the past with seizures and clearly did not do much homework on how to help naturally. The main advice he gave was that if it were his son, he'd be taking CBD oil. CBD oil is oil taken from the marijuana plant that is proven to help in many seizure patients.
The chiropractor told us he thought it was a stealth pathogin in his system but could not define what exactly.
Elijah's seizures did increase this week at home and still not being sure what on Earth to do, we took the neurologists orders and began the rescue med. This is the lowest we've ever seen Elijah. He was bed ridden with no eye contact. He was just a breathing body. He couldn't move his limbs. We'd hold him and he'd be limp in our arms with no head control. It was literally hell on Earth for our family. At the end of this week Elijah showed no improvement and we were back at the E.R.They were debating letting us be readmitted as they knew Elijah was just on the ketogenic diet and not wanting to trial more drugs (which makes no sense to me as the Keto diet is prescribed and followed by this hospital!). We were in disbelief for being shunned. We were in search for help for our son. What could we possibly be doing wrong? Our thoughts are that they didn't believe we had followed their orders of doing the rescue med. But we had! Nothing made sense and it felt like such a bad dream. A horrible nightmare.
During this visit, they clarified that they could only offer help in the form of medication. And that we had to be on board in order to be readmitted. Again, at this point, we still weren't sure of what to do or how to handle this new world of seizures so we agreed. Who else was there to trust? He had been in such bad shape that they signed him up for physical therapy, occupational therapy, and speech therapy. Whew. He couldn't hardly do anything on his own and had tremors like he was going through a drug withdraw (which he truly was, wasn't he?) The only thing that stopped this round of seizure clusters was steroids. They prescribed two weeks of steroids for home and discharged us. They explained that this wasnt a long term solution but it solved the immediate problem. Long story short, the very first hospital stay visit mimicked the last and drugs only stirred up horrible seizures and we left on keto diet once again. Oh and Keppra (an anti-seizure medication-which if you're following along, was the very first medication prescribed in March when Eli first started having these nasty seizures. The first time didn't work so why would it now?) which they claimed was helping but we weaned that once we were home and his seizure improved. Of course ;)
Once we were home it was evident I needed stable help from sitters. His brothers had free reign of the house. I couldn't do anything but care for Eli. Feed him, change his diaper, and hold him. Even when he was able to control his urine and bowel movements we had to hold him at the potty as he was having so many random drop seizures that he once fell and busted his nose on the rim of the toilet. His 1 year old brother learned to do things 2 year olds eventually learn. He was going upstairs and playing in the sink, opening doors, feeding the cat, etc. all because I was too busy with Elijah to be able to run after a baby. I couldn't baby my baby because I had to baby my 4 year old. I was trying to take care of one child while the other was getting too much freedom and it obviously wasn't safe.
We bounced around babysitters and honestly we couldn't find one that would stay longer than a month or two. In my opinion it was simply too depressing. One day Elijah would be speaking and then the next day he's be bed ridden and uable to speak again. And to top that off, Anthony grew a horrible, mean attitude. His babysitter had to deal with a sick child and a boy who didn't want to play with them and spoke with disrespect. Fun job, right?!
Amoungst all of this instability, we found out we had mold in the basement and to be safe we decided to move in with our amazing neighbor friends for a few wks while this we remediated. This was the first time we had to "open our doors" to let someone in and see what devistation was taking place. One was now able to see how hard getting through one day was. It was embarressing and we were vulnerable. Our friends were so patient and kind through this time period and let us take over their kitchen with scales and oils. Her beautifully clean home wasn't so perfect with us there but having a friend to show us some love was just what we needed during this time. This was the first time we were truly noticing how every single thing we put into Elijah's body effected him. We tried probiotics to help stabilize his gut bacteria and whew! seizures went sky rocketing. His body is so sensitive and it took us months and months to begin to understand (and a whole other blog post).
The school year started and Elijah couldn't return. I had to try to create a homeschool but with Elijah having such frequent seizure attacks, learning was out of the question. On good days we could still recite his vowels and trace. My Elijah loved school so much and was such a smart 3 year old that was so excited to be blending short words like his brother. It simply broke my heart that this zeal for learning and spark in his eye was gone.
Still searching for direction, I decided to take Elijah to a neurologist my friend suggested based on the fact that she is more open to parent's freedom of choice for their child and not a pusher of medications if the parents don't wish for it. After hearing his story and a brief visit with Elijah (which I remember he was currently having drop attacks because he was able to play and walk but was wearing his helmet) she said if he were her patient, she would label him having Doose Syndrome http://doosesyndrome.org/. This is based on EEG readings and seizure types, this is not genetically linked. Doose is a diagnosis one never wants to hear as it usually means a regression of learned traits and typically growing up to be a dependent adult. Based on this input, I went home and joined "The Doose Foundation" group on Facebook. I must say, the best support I have had from anyone with seizure knowledge has been from these Facebook pages. Specifically the "Diets for Epilepsy" page. After joining the Doose page, I let months pass.
Hello and welcome to Elijah's story. His story of suffering, relentless strength, and eventually seizure freedom. Elijah experienced 100s of seizures a day and doctors labeled him as having epilepsy with an "unknown" cause. As parents, we truly felt that there HAD to be a cause. He was a perfectly healthy boy up to the winter of 2014 and we weren't going to accept the fact that now he was randomly having so many seizures that his quality of life was severly affected. I chose to write about his year of illness and what led us to find the answer as it was very hard to find information for myself while searching. I hope this blog can help direct you or at least inspire you to never give up the search for truth and light. More needs to be spread about the awareness of seizures and naturally treating them. But not simply naturally treating but becoming seizure free by giving the body the resources it needs to heal itself, not band-aiding the symptom with medication. This blog will naturally lend itself to be a resource for those wanting to live a clean life style as that has been the answer for us in healing our son and as a family, becoming a whole lot healthier.
PART ONE
Elijah had a very difficult winter of 2014-15. It all began in Disney Land where he arrived home sick with flu-like symptoms and his body just couldn't seem to kick it. Elijah is our thumb sucker, lending himself to pick up germs at any and every public place. Throughout the winter he had a total of 2 ear infections, 3 bouts of croup, an "unknown" bacterial infection, and lastly, a 3 week stint of the stomach bug. His body became weaker and weaker as the winter progressed and antibiotics were routinely given. Not once did a doctor ask if Eli had already been prescribed antibiotics. It is a known concern that doctors are over-prescribing antibiotics. It is very difficult for the body to learn how to heal itself and grow a strong immune system if bateria within the gut are killed, including the good bacteria. We noticed that once Elijah started the "antibiotic train" he was never able to fully recover. Now we are aware that while taking antibiotics one should be pairing it with probiotics. I wish the doctors had been educated regarding the use of probiotics in order to educate us, the parents. It seems no pediatriation, doctor, or even neurologist recommends probiotics in their line of work. One buys them over the counter and their purpose it to deliver good bacteria to the gut. Now all my children take probiotics daily.
Elijah's winter ended with the bout of the Rotavirus that I mentioned above, as did the whole family. The difference is that our bodies were strong enough to heal within a week while Elijah's bug lasted 3 weeks and ended with a tonic-clonic seizure on 18 March. "The tonic-clonic seizure is what most people think of when they think of a convulsive seizure. A person loses consciousness, muscles stiffen, and jerking movements are seen. These types of seizures usually last 1 to 3 minutes and take much longer for a person to recover" (http://www.epilepsy.com/). We had NO IDEA what was going on. We thought he was choking. We thought he was dying. Jeff ran him outside screaming for help and all I could do was hug Anthony and tell him his brother was in serious trouble. I knew there was a battle ahead of us. I knew deep down this wasn't simply a choking incident. We were brought to the local hospital where we were told he had a seizure and to contact Primary Children's Neurology Unit for an appointment. The appointment was made for 2 weeks later.
2 weeks go by and Elijah seemed fine. He did have a few seizures that are termed "myo clonic jerks" but they were small and we were hoping his body was simply "resetting". These happened to be all on the same day 22 March. His apt was the next day 23 March. When we saw a neurologist for about a 20 minute out-patient consultation. She was so quick to prescribe a medicine called Keppra. How can someone prescribe such a strong medicine that affects THE BRAIN without even knowing the patient? Without even an EEG!? "An electroencephalogram (EEG) is a test used to detect abnormalities related to electrical activity of the brain. This procedure tracks and records brain wave patterns. Small metal discs with thin wires (electrodes) are placed on the scalp, and then send signals to a computer to record the results" (kidshealth.org/parent/general/sick/eeg.html). She made very clear that she was signing us up for a 2 year prescription.We hesitated one week from giving him this medication as we didn't feel it was the answer for Elijah.
That is until the Sunday after the appointment when he had a jerk so forceful that it flew him back on the ground. He was playing ninjas with his brother and Aunt Adrienne and Dad were in the room with me watching and laughing. Until he fell. We cuddled him and told him he'd be ok through his cries. It was that night we decided to medicate. He was given medication the next two days and he didn't have any seizures or side effects (which the side effects of all anti-epileptic drugs can be very devastating. Keppra is known to be the "safest" new AED as its worst side effect is serious aggression and thoughts of suicide. It's also often the first go-to drug for new patients).
Wednesday we awoke and I went to teach my preschool class as he continued on to his own 3s preschool class down the hall. I had just gotten done telling his teacher, "Hey, if this is all medication means, then this is livable!" We both finished class and Elijah came into my room with his brother and ate lunch. I was helping Anthony wash his hands when I turned around and found Eli on his knees and seemingly stretching his arms out to reach something underneath the cubbies. I went to ask him what he needed and found he was having a tonic-clonic seizure. The 2nd one after his initial seizure at home and his first since starting Keppra. I scoopped him up and ran him down the hall where they called the ambulance.
We were admitted into the hospital and upon entering I asked the neurologists about the Ketogenic Diet, famous for curing a young boy in the 70s. Their answer? That it is a last resort. It's too complicated and difficult for the average family to follow. I'm sorry, but don't give me statistics or lump me into the group of an "average" family. Who are they to know what we can or can't handle? They told us medication would be the first line of treatment and if further down the road we would like to discuss the diet again, then we could.The problem with neurology is that they have no idea what will work for each patient so its a guessing game and the patient suffers through it all.
They began by assuming his Keppra wasn't at a high enough dose so they upped it. What happened immediately? More seizures. The Neurology Department's protocol is if one has a tonic-clonic lasting 5 minutes or more, or 3+ seizures in 1 hour (a cluster), they administer a rescue medication. In Elijah's case it was Ativan. This happened for Elijah every few minutes. One long seizure=rescue med. Each and every time they'd just give more meds. And more seizures followed. They tried Keppra, Depakote, Onfi, and Clonazepam.
Jeff was stellar at taking notes and wrote down everything Elijah ate, drank, pooped, peed, and each and every eye twitch, jerk, or long seizure. Doctors would leave for hours as we'd witness his suffering. And all we could do was count. Count the seconds and minutes our son would shake in that awful hospital bed. The doctors and nurses told us Elijah would be severly worse if at home with no medication. They would never blame the drug. They told us this was our "new normal" and that this was seen with a lot of their patients his age. We begged the doctors to notice the seizure patterns that we were noting on the dry erase board. How could they not admit that Elijah's condition worsened immediately once he started these drugs? All the sudden he couldn't walk or talk, and was drooling at the mouth. This happened over the span of just 4 days. They admitted that they were trying to raise his depakote levels too rapidly and failed to check his ammonia levels until Jeff mentioned it as a side effect of Depakote. They gladly abliged to check and found his ammonia levels were too high for his liver to cope with, thus poisoning his body. He became a zombie in bed. Couldn't eat, color, even point to things he wanted. We demanded a weaning of all drugs and initiation of the Ketogenic Diet. They agreed.
