So here is the deal for those of you who don't know what this whole thing is about.
Jonah will be starting the Pediatric Neurologist prescribed diet which is called the Ketogenic Diet on Tuesday. (You can find out more on the diet here.) There is a wealth of info on the web about this diet and we are very happy and nervous to start this potential game changer for Jonah.
The doctors up until this point have attempted to give us an idea that our Jonah will more than likely need to be on medication for his entire life due to the type of Epilepsy he has. (MAE as it is commonly referred to, or Doose Syndrome) We have been looking all over the place for a doctor that would be able to first exhaust the resources available to her/him with finding out as much as we can find out about what Jonah has and what he does NOT have and then continue on with a potential cure for his condition. That is where this gets tricky, most doctors have come to the point that once a child has started to have multiple seizure types such as our Jonah they are convinced that the best course of action is heavily medicate them, which obviously will alter their quality of life. That is why I started to do my own research into what all of the options are, and I mean all of the options. Surgery, prescribed diet, multiple medications, praying, overall diet changes, and doing nothing were really what I came up with. So I was intrigued by this doctor out of the Mayo in Rochester that was really on my train of thought when it comes to treating root cause and potentially curing the seizures all together.
That is when after visiting our second opinion doctor out of the St. Paul area we were pressed to come up with someone that might be able to assist us with putting our best foot forward while attempting to give Jonah the best chance at beating this thing.
So it comes down to this: medicate him with more pharmaceutical drugs and hope that they will work, and more than likely continue to treat symptoms of the seizures and deal with the many side effects that they bring, or to go straight to the point where most families that are in our situation find themselves inevitably anyway after attempting to treat their child with medication over the course of years with failed results, only potentially giving the condition time to destroy pathways in the brain that might have otherwise have been spared if the diet had been started sooner. So for us we are thinking of it this way, it is better to start off with the diet as even if it doesn't work at least we will know that and at least we attempted to go the path that could have resulted in Jonah being seizure and medication free after the diet has run its course. So the chance of Jonah being seizure and medication free is the best option for him right now and the only known method for that to happen is this Ketogenic Diet and it can only be administered via a Dietitian Team and a supporting Pediatric Neurologist, to which we have found both to be very responsive to our overall plan so far.
We are not a neurologist and don't attempt to understand all of the stuff going on, however we are Jonah's parents, and we think if we get him off medication and on the diet and he is able to be seizure free for 1.5 to 2 years his brain is a powerful thing and hopefully will be able to heal itself along with God of course having his hand in all of this Jonah might be able to look back at this time and thank us for trusting God.
I want to thank the Irvine family for sharing their story as that is what lead us to Dr. Wirrell. (Please take a minute to read about them here.) Their story was so similar to ours we couldn't ignore it, and bring it into our options list.
Below you will find out some stuff that the doctors and the dietician team have come up with that we will more than likely need over the course of this at least 3 to 4 month trail that will hopefully turn into his long term treatment.
The cost on the right is only my guess, the reason I am putting this list out here is I know that many have asked how exactly they can help, well this is really a tangible way that folks can help with what we are going through, not everyone wants to or can watch our children as a way to assist. (Not minimizing folks that have watched our kids, cause that is awesome)
Scale for weighing food (must be gram scale with 1/10 accuracy): $40
Small plastic storage containers for small amounts of food: $20-$30
Screw-top plastic beverage bottles for liquids: $
Small rubber spacela's to scrape every morsel of food: $
Measuring Cup/s marked with milimeters (small) $
Bendable Plastic Straws: $
Small oven safe dishes for microwaving: $
Small cooler/Lunch type insulated bags for traveling with meals: $
Tooth picks for eating small pieces of food: $
Blender: -Item already
Milk Shake Wand or Small hand beater to whip cream: $
Tape for making labels on food containers: $
Small Skillet (Stainless Steel)
Bathroom Digital Scale for weighing your child: $
Urine Ketone Strips (available at pharmacy): $
SnoCone Maker: $
Coconut Oil: $
Toothpaste (Tom's of Maine): $4/$5
Fuel Costs to the Mayo over the course of this: $50 per trip, we'll probably need to visit every couple months
Special foods: gift card to grocery store
Small toys or books that can be given to Jonah for incentives when he eats his whole meals- dollar store, goodwill, recycled toys
Thank you for coming along side us in our journey to do everything we can do to help Jonah.
We will be using this blog as a tool to keep you all informed about how things are going for Jonah.
We want Jonah to stop having "drops" that can lead to this: