Ketogenic Diet

We went to see Dr. Farrell, the ketogenic diet neurologist today.

The appointment went so smoothly!! But it didn’t happen without your prayers!!

When we went into the appointment, the Dr. reviewed the seizures, charts and medications, looked up at me and said, “So, what would you like to do next?” I was expecting him to tell me his opinion first then ask me that question! I told him I wanted to go off the diet. It had worked in the beginning, but it has now lost its effectiveness. He said, “OK.”. Simple as that!!

Then he talked about how long to take to come off the diet. I was expecting them to say 2 or 3 months. He said, 2 or 3 weeks. That means Mason will be able to have turkey dinner with us at Christmas!!!!!!!! He won’t be eating cookies and stuff too much then yet.

After that has settled down, we’ll continue going down on meds, as it works.

The Dr. also asked something to the effect of what I’d like to do in the future. So we talked about a couple of things.

So today I felt like I received everything on my wish list, and more! Going off the diet without any opposition from the medical professionals, and doing it quickly. And just in general having increasing input in the direction of what to try in the future.

Although it may seem that we are back at square one again with the seizures, we have did have a short reprieve from the severity of them. As well, we have seen some significant development progress compared to the previous four years, in which there has been very limited advancement. He has become a little more alert and aware of himself and what goes on around him, picked up a few new words, and learned routines (although current tantrum behavior interferes with that).

His current stage of “terrible twos” tantrums and screaming are excruciatingly hard to deal with, yet they are progress in development. ( no I haven’t lost my mind . . . permanently) I believe there was enough of a reprieve from the seizures this summer and fall to allow Mason to move forward into this next phase. A toddler throws tantrums and screaming fits because he is exerting his new awareness of self and will and becoming more aware of his ability to control and make “decisions”. So there, . . . . the terrible two’s are a good thing! The hard thing is that Mason tends to stay in a stage about ten times longer (or more) than a typical child.

So this Christmas, as you sit at the dinner table with your families, remember Mason for just a few seconds - eating foods like turkey, mashed potatoes, gravy, stuffing, corn, and just a taste of a cookie for the first time in half a year. He will not have to eat any butter and oil that day!!

So now I wish you a most wonderful time preparing for Christmas to celebrate the birth of Jesus!

THANK YOU so much for your many prayers, and please continue. The future is still filled with great uncertainty, but God has each day planned for us, and He will prosper us with hope and a future. We have called upon Him, and He HAS answered!!!! Jeremiah 29:11 & 12

Blessed be the Name of the Lord!!!

Love Shirley

E-mail updates

I am posting the last three email updates I sent out:
November 9, 2004
Here I am again, asking you for a moment of your time to pray for us. I always have two reasons for sending out these e-mails regarding Mason. One is that so many of you ask about him, I for that I am extremely grateful, so I want to keep you updated. The second is that we need you to call on the Name of the Lord on our behalf. For that I also thank you.

We’re going down that road again. Mason’s seizures have been increasing dramatically in numbers, and in severity. I really feel at a loss for knowing what the next step is. Although there are more medications to experiment with, a positive prognosis is extremely unlikely. Do I sound discouraged? Well, I am, in regards to what is happening with our little boy. I’ll never get used to the emotional roller coaster ride that we go on so regularly.

Yet, I know that my Father is faithful. He is faithful to always be here for us. I choose to say Blessed Be Your Name, Father, Jesus, Holy Spirit.

This is my favorite song:

Blessed be Your name in the land that is plentiful ~ Where Your streams of abundance flow ~ Blessed be Your name ~ And blessed be Your name when I’m found in the desert place ~ Though I walk through the wilderness ~ Blessed be your name ~ Every blessing You pour out I’ll turn back to praise ~ And when the darkness closes in Lord ~ Still I will say ~Blessed be the name of the Lord ~ Blessed be Your name ~ Blessed be the name of the Lord ~ Blessed be Your glorious name ~ Blessed be Your name when the sun’s shining down on me ~ When the world’s “all as it should be” ~ Blessed be Your name ~ And blessed be Your name on the road marked with suffering ~ Though there’s pain in the offering ~ Blessed be Your name ~ You give and take away ~ You give and take away ~ My heart will choose to say ~ Lord, blessed be Your name

Thanks for your prayers, Shirley and Daryl

November 30
Hello,

Just a quick note to let you know where Mason is at right now.

He continues to have between 6 and 9 seizures per day, not including the 1 or 2 each night that I suspect. This is in spite of tweaking his diet and reducing meds a bit. As the seizures increase, his behavior becomes more unmanageable. A lot of screaming, crying and tantrums. He has to leave kindergarten a lot these days – to go into the special ed room – which is a fun room, but not integrated. A matter of a few weeks ago Mason was in the K room nearly the whole morning, doing what the other kids were doing, great focus, following routines and directions extremely well.

Tomorrow, Wednesday, he will be fasting for 24 hours to help the neurologist decide to continue on the diet or begin the process of quitting it.

So while Mason is fasting, will you pray? He knows how to say “amen” so I guess he will be praying and fasting!! J

We will most likely be going in to see the neurologist in December to see what to do next. I have some treatments I want to ask him about.

Pray for God’s wisdom and understanding for me and Daryl, the doctor, nurses, and dietician, who are all involved in the decision process. And for my sanity. The bottom is dropping out from under us again.

I have a most wonderful family. Daryl is so supportive of what I do with Mason, Asia and Sydney are amazingly understanding for their age. Bedtime is usually very easy for Mason, but yesterday he fought it quite hard. When I finally emerged from his room, the girls were standing in the middle of the living room with little grins on. They had cleaned up all the toys, set the chairs straight, etc. The message on the magna-doodle said, “we wanted to help you mommy. Love Asia and Sydney”.

Thanks for your support!!!!!!!!!!!
Shirley

December 1
Thanks for your prayers today!!

Mason did very well with fasting. He did not indicate that he was hungry all day until bedtime, at which time he was finally allowed to eat. During school he was either extremely cranky or extremely happy. No middle ground. He came home around lunch time, had a great nap and was in a great mood for most of the evening. He had five seizures, so still close to normal range, I don’t know yet if we will continue the diet, or if it’s worth a shot to continue a little longer. I don’t mind doing it if I know it’s working, even in part.

There are some of you that forward this on to care groups or others you know. That is great! Enlarge that territory of prayer. Some of you even fasted today along with Mason. WOW! My heart (and eyes) are really touched.

I had to pop in at a store with Mason today and while I pushed him down the isle, he put his hands together up on his forehead said a few “words” then said “amen”. A minute later he ”prayed” a longer prayer, which turned into a song. Although I could not understand a single word, other than amen, God knew. And now, although I don’t understand what is going on, God knows. That is where I rest. That is why I can agree with Job and truly say, Blessed be the Name of the Lord.

Thanks so much for your continued prayers.
Love Shirley