Part Two-A Rollar Coaster

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.