J a k e

J a k e
at the beach in Destin

Jake's story

July 21st was a normal day, as were the days of summer before. Everything was in it's place. School days were approaching and the family was enjoying the last days by the pool, ignored bedtimes and high popsicle counts.

Then July 22, 2008 came....

Jake had his first seizure. I did not recognize it as such. It was not until he had several more of these "little jerks" and bloody noses that I thought this could be seizure activity. We were scheduled to see a neurologist on August 4th, after going through our pediatrician, however we didn't make it that far. I was awakened August 1st, by Jake in a full seizure (6 minutes long)...he started to turn blue so I called 911....

Here begins our journey......

...we were taken by ambulance to the hospital. Checked in. Released. 3 more grand mal seizures after being released. Checked back in. Sent home 3 days later. Another grand mal, this one lasting a whopping 11 minutes and taken by ambulance again. Stayed at Childrens Dallas for a week. Upping meds, changing meds and mixing meds.
Diagnosis: Epilepsy
Cause: Unknown
We have now found, through some absolutely amazing family and extended family, whom I will NEVER be able to thank enough, the wonderful doctors and nurses at Cook Childrens Hospital in Fort Worth, who are continuing to help us through this. We have had another grand last thursday, and are averaging anywhere from 5-30 seizures (jerks, drops, stares) a day. I was to begin back teaching at Apollo, but am having to put that on hold until the seizures are controlled. Jake is not able to go back to school until he is 30 days seizure free. We are still waiting for that ONE day. Please pray for our family and for little Jake. Although this is not the end of the world, it is a huge hurdle we WILL overcome. Pray for courage for Jake, understanding as parents, good doctors and for the right medicines.

Jake's mom, Christine


*********************************************************

Wednesday, January 7, 2009

cheese, cheese, and more cheese

I did it! I jumped in and made my first Modified Atkins Meal, via a Keto recipe! I made Jake a pizza, that he actually ate!

The kid has not eaten in over 36 hours, except for sips on "flavored water" and "cream," which is his new milk. The first day of the cream, he thought it was the greatest drink ever. However, today the cream did not get the same welcoming.

I had cups, sippy's, and different cups thrown at me all afternoon. He did not want the cream! He did not want water, he did not want "cheetos" (american cheese nuked to make crisp crackers). The kid wanted nothing, except to beat me, the dog, or his sister up.

My mom did not even take him to school today, as he wasn't acting himself. She reported he was very tired, weak, couldn't urinate, and wouldn't eat. I communicated with her on the phone several times during the school day to try and tell her what to "try," but it was all for naught. Nothing worked until the PIZZA!

Yesterday Matt brought home endless supplies of pork rinds, a "free food", eggs, sausage, cream, and bacon.

We can do this! Yeah 24 hours in, I have my doubts. We can accomplish anything, but it is heart breaking, as he is crying for dessert. We most always have family dinner and then the kids get to choose a dessert. Unfortunately,our pantry is not yet stocked enough to make the $9.99, carb free, brownie mix I purchased at a speciality store. These brownies are surely made of gold! It was actually so surprising, that I didn't even flinch buying this gourmet bag-o-brownies. This is going to help my boy adjust to his new diet and get rid of damn seizures, it is a small price to pay.

Jake had 10 more seizures yesterday and about the same today. Very discouraging, as we were a couple/several day at 3 and under.

So back to the pizza. It was surprisingly easy to make, Jake liked it, and Matt liked it so much he was even trying to steal it! Up until I was swatting his hand, as this stuff is gold! I need to freeze all I can!

This diet will not be easy, by any stretch, but we will make it work for our Jakers, tantrums, thrown sippies, thrown food, and refusal to eat, will get better.


"Faith is to believe what you do not see; the reward of this faith is to see what you believe." [SAINT AUGUSTINE]

God Bless~ Christine

5 comments:

Julie said...

Wow- that is amazing. Who can go wrong with cream and bacon??? It's only been 2 days, hopefully he will get used to it.

Fawn said...

Hi Christine -- thanks for stopping by on my blog!

I'm a little confused... are you switching from MAD to keto? This is telling me that you are doing this on your own without the benefit of a neurologist, nurse, or dietician...? If that's the case, I'll have to say that I'm rather worried. I went back and reread some of your previous posts and remembered that Jake will be going back to the neuro in early February. I really urge you to see him first. If you can't wait, call and see if you can bump up the date.

The keto diet is usually initiated under medical supervision to ensure the child doesn't get too dehydrated or too ketotic or constipated -- all of which happened to Jade during her initiation. Also, all of her meals are specially calculated for her age and weight. She gets 272 calories per meal and 75 calories per snack all at a 4:1 ratio with ingredients weighed out to the tenth of a gram. Then there are the special vitamins and supplements that are needed... The dietician is a person I'm in touch with several times a week (and more often at the beginning).

I can tell that you're eager to make the seizures stop and I completely identify with that. I love your enthusiasm and excitement! But I still think it's best to wait to have the neurologist and a keto team on board.

The diet sometimes works miraculously quickly, but more often it's a longer-haul solution. Jade's been on it now for two months and we've had ups and downs (those setbacks are discouraging, but it's important to look at the bigger picture) but she's definitely improving. Yesterday she had NO drop seizures (they're the WORST!!!) and hardly any other seizures, either. Today she didn't have any all morning but then didn't nap and ended up with a few in the evening. This from a girl who was practically a zombie from all the drugs back in October.

Hang in there!

Anonymous said...

Your right it will not be easy but you can do it and if it helps your sweet little Jake get better then it will be all worth it! Your determination is simply amazing. (we have a mutual friend, Julie)You are simply amazing and we keep you and your fmaily in our prayers each night. Keep up all your hard work. Amy

Leslie said...

I am confused like Fawn..which diet are you doing? Remember it takes time and just about nothing works over night. You can do it! Think "We Will"! YOu already made progress by coming up with the pizza. Love you!

Brandy said...

Yay for pizza! It will be hard at first, but you will endure. Especially once you figure out the faves and you can just go with those! Hang in there...

word verification: acereiza :)