Monthly Archives: September 2013

Hope

26 Thursday Sep 2013

Posted by Amy in Doose Syndrome, Ketogentic Diet

≈ 6 Comments

Jeremiah 29:11 is a popular and often quoted bible verse : 11″ For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.”

It has been a favorite of mine for many years, not just standing on it’s own but in the greater story of scripture. It is God’s promise to fully redeem his people, it is told to them in the middle of a terrible circumstances and scripture records that God does ultimately fully save and redeem. It became especially significant yesterday when Chuck came home and reported something really awesome!  Below I have copied and pasted Chuck’s Facebook post to one of our Ketogentic Diet groups.

I just had an amazing God experience. In addition to being a Doose Dad, I teach at the University of Kansas. One of the classes I teach is in the Leadership Studies Minor. The LSM is a group of the best and brightest from across campus, all kids who are very involved on campus and who have stellar grades. Of those we have a select group who we have in an independent study, in essence the best of the best and brightest. So, yesterday I was meeting with them going over some projects we had coming up and one girl asked if we needed a baby sitter, I said yes but our son has severe epilepsy just so she would be aware. All 4 kids said they either had epilepsy or had at least one seizure. Two of the kids had severe epilepsy, one Juvenile myoclonic – she is on Keppra, the other, Danny Sanchez, had the same thing Gabriel has. 18 years ago after 14 drugs his mom took him to a then experimental trial at Johns Hopkins for the Keto Diet. Below I link to some news stories about Danny and his mom.

I was having a hard time not breaking down knowing that this kid who was at one point having more than 100 seizures a day was not not only in college but thriving. I know it doesn’t mean that Gabriel will be able to go to college etc, but It was a powerful glimpse of hope for me.

Also, while we struggle constantly to stay up with the demands of the Diet.  Danny’s mom was doing it back in the day before computers allowed for quick calculations of precise gram measurements, and dieticians were available down the street not across the country.  All Keto Parents deserve some sort of Saint Hood, if I do say so myself lol, but Danny’s mom all the more so.

AMAZING! Thank you God for this conversation and putting these students in Chuck’s life at the right time, to have the right conversation. Not to get too theological but I believe sometimes God orchestras things perfectly for us (I don’t know or understand why everyone moment isn’t that way…maybe we just need to watch closer for His presence in our lives, I don’t know).  Beyond just the seizures Gabriel has A LOT to overcome physically and developmentally. What hope it gives us to hear of a bright college student who has overcome the same thing our little guy is fighting right now! We especially loved that this young man reported having NO memory of being on the diet! So amazing to think the burden and pain of this time will not be Gabriel’s to bear at all  🙂

Another bible verse about Hope that I love is Romans 5:5

“and hope does not disappoint, because the love of God has been poured out within our hearts through the Holy Spirit who was given to us”

Danny Sanchez Story Link 1
Danny Sanchez Story Link 2

official “yes” to weaning diet

25 Wednesday Sep 2013

Posted by Amy in Uncategorized

≈ 1 Comment

We had our appointment with Gabriel’s specialist yesterday and it went well. The doctor agreed to let us wean the diet. He was clear that it would not be his first choice but he understood why we wanted to try. The doctor did a good job in making sure we understood all the factors in play. The nutritionist will now work on lower ratio meals/snacks for us to start preparing for Gabriel. The wean will be very slow and steady…..It seems like it will take several weeks (10-12) or even more. Right now Gabriel is on 4:1, next will be 3.75:1 for 2 weeks, then if everything is successful we will go to 3.50:1 for 2 weeks, etc. I don’t totally understand how long we do that process but we will take it one step at a time. I would have loved to have a simple countdown calendar but that isn’t going to happen. It is going to be one day at a time, hoping and praying for the best and “figuring it out” as we go. Thankful for continued and support and direction from his neurology team. We are also very glad that our visit went well and the doctor agreed to let us try this. We could be totally wrong in asking for this….only time will tell. TOTALLY nerve wracking! It is terrifying to think seizures could be right around the corner again because of our choices. On the flip side so EXCITING! We will know for sure if he needs the diet or not and if he doesn’t cooking and food issues will be so much easier 🙂

I continue to see God’s hand at work in our lives. Today I am hopeful for Gabriel’s future 🙂

Birthday Celebrations

23 Monday Sep 2013

Posted by Amy in Uncategorized

≈ 1 Comment

We got to celebrate Grandpa Frank’s (Chuck’s dad) 80th birthday this weekend. Gabriel was very excited about having a “Happy Birthday Party” for Grandpa. Gabriel talked all day about Grandpa’s cake and his candles. When the cake arrived Gabriel was very interested in it. He kept looking at it and asking questions.

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He was so anxious to help in anyway we would let him. He helped put the candles on the cake and blow them out.

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Not once did our sweet boy try to sneak a bite of the cake. I was so proud of him. It was clear he was obsessed with the cake but followed the “rules” for his eating perfectly. The whole evening I kept thinking. This maybe the last time he has to watch someone eat birthday cake and have to eat something different! I am soooo hoping and praying that is true! Our appointment with his epilepsy specialist is tomorrow morning. It has seemed the longest couple weeks waiting for this appointment. We are hopeful that the team is ready with diet wean plan for us.

The last time Gabriel got to eat birthday cake was on his 3rd birthday (I think)
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He was so proud of his Green/Blue M&M 3 cake! Nonna (Amy’s Mom) made him exactly what he has asked for! (it is strange thinking back, his reaction was similar to his reaction to Grandpa’s cake this week…he just LOVES to look at and talk about Birthday cakes!)

We spent his 3rd birthday in the hospital, right when the seizures started. They did a great job making it a special and fun day for Gabriel.

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He loved his Thomas train set, his balloons and his Chocolate cake. Tomorrow feels like a big occasion. Getting a chance to see if his body can stay seizure free off the diet will be an occasion to celebrate and remember.  My hope and prayer is that we will be able to have a successful/seizure free diet wean and includes eating CAKE!

 

 

 

It’s time Part 2

09 Monday Sep 2013

Posted by Amy in Uncategorized

≈ 3 Comments

I realized I left out a very important detail from the last post. We won’t start weaning the diet until we have the medical support to do so. All of Gabriel’s meals are created or reviewed by dieticians on his medical team. We will need their assistance in knowing how to safely feed Gabriel while we wean from the ketogentic diet.

It’s Time

08 Sunday Sep 2013

Posted by Amy in Uncategorized

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Chuck came up with the title for this post and I think it is perfect! We (Chuck and I) have officially decided it is time to start weaning the diet.  As of tomorrow Gabriel will be 6 months seizure free! YIPPEE!

We have come to this decision for a variety of reasons. Mainly, we want/need to know if the diet is doing anything or not. We are pretty sure it is not. We have been in touch with the Dr. we saw at John Hopkins last November.  He said back in June that he would start weaning the diet (And he literally wrote the book on the diet). Our doctor here was not at all in favor of weaning the diet at that time. So we followed the course our doctor here recommended and weaned a medication. SO glad we did! Great to see Gabriel off of a med and his personality coming back!

Gabriel has been BEGGING for food lately. I have been careful to still feed him in ratio but have not been as diligent in calorie intake.  He is also testing boundaries with food more and more. He does so well 90% of the time but the older he gets the harder it is going to be to control what food he is and isn’t around.

If the diet isn’t keeping the seizures at bay it is a lot of work, expense, physical toll on G’s body  and social isolation for all of us for no reason. We are more used to it than a year and 1/2 ago. However, it very difficult to live in our food obsessed culture, and not feel constantly out of place. I would love to focus my efforts on helping him developmentally  and enjoying time with as a family, instead of spending so much time buying, preparing and avoiding food. I keep finding myself dreaming of trick or treating for real! Not having to have a special treat ready to hand Santa instead of the candy cane! Getting to leave the house without spending an extra 5-20 minutes making sure he has the food he will need.

Even, with the resolve of the decision, it is scary. We are hoping our doctor understands and supports our desires (they are not decisions made in a vacuum, we have done a lot of research, followed the diet for over 18 months, sought input from a variety of reliable sources). We are also hoping that the seizures stay away. Epilepsy is such a bear! It is scary to think that any change we make in his treatment  can cause the seizures to reappear. He is doing awesome right now and we want that to continue. We also want to make sure his body is only being exposed to treatments that are working.

We covet your prayers for a great response from our doctor and a smooth, seizure free wean from the diet.

****I want to be clear that we still totally believe in and support the ketogentic diet as an amazing and truly miraculous form of treatment for epilepsy patients. (It just doesn’t seem to be Gabriel’s miracle)

 

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