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

Jesus in the Boat

I spoke with my friend Janelle this morning. Her little girl has a severe chronic condition and had taken a very bad turn. My heart broke for her. Then she asked about Mason and she found out that Mason had taken a bad turn as well. (seven seizures in one day, with a dramatic increase in his tonic drop seizures)

To which Janelle responded with "I guess we're in the same boat today."

The next moment she burst into a familiar kids song - "With Jesus in the boat we can smile at the storm, smile at the storm, smile at the storm!"

You have to realize we were two mom's with tears running down our faces when we both burst into laughter.

This day has not been easy. We went into Childrens Hospital in the afternoon to weigh Mason. In the next day or two we will decide if we will restrict his diet yet more, or think about another medication. There really are very few, if any, options left.

Although it looks like another hurricane is comming our way, Jesus is in our boat.

More Seizures

Poor little Mason. He has been suffering from a really bad cold. He NEVER gets sick. But now that he is in kindergarten all day, he is exposed to that stuff so much more. The last cold he had was in only one nostril, and lasted only a few days. This one came with a cough, fever, goopy nose, etc. He missed two days of school, one of which he slept most of the day. Back to school today, and what a cranky kid he was!

His seizures have increased again in the last several weeks. In summer he was down to two or three per week. Now he is back at four or so per day. He has three kinds happening right now. Blinking, myoclonic (clusters of short body jerks), and tonic drops (goes completely stiff up to 10 or 20 seconds). They don't come as fast and hard as they did last year.

In spite of the seizures, he is continuation to learn! :-) For the longest time he said a nasally "hang" for thanks. A few weeks ago it turned to "ha gung". In the last few days it's closer to "hang hoo" for thank you. And he says teacher in school! Well, his version of it.

He naps in school, plays outside, spends most of the morning in the kindergarten classroom, sits well at his desk, follows routine well. Going on the bus is a definite highlight!

Two Buddy's

The two Buddy's are becoming better buds!! (We have called Mason, Buddy since he was a baby causing us confusion now!) Because of Mason's unpredictable behavior, he can at times become too rough with Buddy, causing Buddy to avoid Mason more. Over the last few days that has begun to change. It started off with Mason playing with his squeaky fish. It turns out that nothing gets Buddy more excited than the "squeak". Those two had the time of their life for about twenty minutes taking that thing from each other. Mason howled with laughter, while Buddy jumped and ran around like crazy! After that Buddy has been checking Mason out more. When Mason throws a temper tantrum, Buddy comes over and starts sniffing his head, tickling Mason, quickly causing severe giggles. We are working at teaching Mason how to play with a dog. They have some other similar interests as well. Mason made his way into the garage today, and made a bee-line for the car, opened the door and climbed in. Buddy was right there, too. So there they sat in the back seat, waiting to go bye-bye. I couldn't drag either of them out, so they sat there for a bit. I couldn't find the camera quick enough, but next time (and I'm sure there will be a next time!!!) I find those two in there, I will take a picture!

School - day five

Each day is getting better for Mason as he gets used to school. Friday I decided to stay to see if that would lessen his anxiety. (his seizures have been increasing because of the stress) It actually made it worse, so now I cut it quick at the door. A cute little story though . . . we ( me, Mason and his special needsteacher- Ms. S) had been walking down the hall, went into the kindergarten room a bit, then to the water fountain just outside the door. I pressed the button so Mason could drink. It went up his nose a few times which he thought was very funny. After a couple of minutes, I signalled Ms. S to come and press the button. I didn't move, and she stood behind him and pressed the button without him noticing it. Shortly Mason did notice! He grabbed her hand and shoved it back. Grabbed my hand and put it on the button and kept his hand on my hand. He knew what we were up to, and was not going to let us pull the wool over his eyes again!!!

Yesterday he pulled me into the classroom but cried as I left. Apparently he stopped within a minute or two.

Today he made a couple of quick complaining sounds before going into the classroom. Once again he pulled me into the classroom, only this time HE let go of my hand as he stepped through the door!! He did not cry at all!! Very exciting!!

Keep on praying, children of God!!!

Buddy

After years of saying no to my family, I caved in and now we have a dog. Well, it wasn't exactly caving in, as I was the one who initiated it. Every one who knows me is in shock! Can I tell you the whole story? A few years ago I read about seizure dogs, and decided that that would be a good reason to get a dog. It also had to meet my long list of criteria. Trained, well behaved, not jumping on people, quiet, no shedding, small but tough, maybe a few other things. Recently I read an article in the local newspaper about a man who trains fox terriers for children with certain kinds of special needs for free. I gave him a call, and he brought Buddy over the next day. He seemed to target in on Mason quite quickly. So now we have a dog! This is a very special thing for someone to put all that work and cost into training a dog, to give it away to someone else's child!




Although we could see there was an initial attraction between the boy and the dog, right now Buddy is a little scared of Mason at times. That is because Mason does not behave as a typical child, petting and playing with animals. There will be some work involved in training Mason how to play with Buddy, but I think it is very possible. Especially as the girls get older and more involved with their sports and friends. There are those kinds of things that Mason will not be likely to do much, especially in the next number of years.

Buddy is a great dog. He is very social, will jump straight up in the air, but not onto people, unless by mistake if he is too excited. He loves going for car rides, he went along to Childrens Hospital last week and did great!! He also has Service Animal papers, so we just need to get a vest to that effect and we can take him anywhere. Mason can be kinda rough on Buddy, but really likes him. He does shed a little, but i can deal with that.

SOme of the goals for the future of Buddy with Mason, first off to be companions, guarding Mason from danger, or running off. It would really be great if Buddy would recognize the onset of a seizure, as some dogs are capable of doing.

I look forward to telling you more stories of a boy and his dog!

Back to School

Hello! We have discovered an new and easy way to keep you updated on Mason's progress! Previously with Mason's Web ( www.bluesticker.com/mason ) I had to have Daryl post what I wanted, which was a lot of work for him. This, even I can do!!




Well, Mason has started kindergarten. What an adventure! First I need to back track a bit. Last year when he started pre-school, he sailed right into that room, said bye to me and had the time of his life! He has always entered new territory without a look back. Since starting the ketogenic diet, his seizures have been reduced a lot and that has also increased his alertness, and awareness of his surroundings. He is saying more words, and just plain progressing at a slightly faster speed. That is a fabulous thing!! The other side, is that with being more aware of his surroundings, separation anxiety has kicked in . . . big time. Two weeks before school!!

Anyway, the first few days have been quite rocky for Mason. He screams with everything he's got initially, but does settle down shortly after I leave and has a good time. When I pick him up, he gives me the biggest hugs of his lifetime! His seizures have increased because of all this anxiety, but his nurse has recommended to continue as we are and hopefully the seizures settle down quickly and Mason gets over the separation soon. The teachers involved with Mason at school are great at accommodating his needs. I know he'll do fine in a little while. Me too! Yesterday he cried a total of less than 5 minutes, I was told. My reply:" So, I cried more than he did!" Apparently kindergarten moms are allowed to do that. Especially if it is their last child.

He will be in the all day kindergarten program. The plan is for him to be in the kindergarten classroom in the morning and the resource room (special needs) for lunch and the afternoon. So we will work into that. So far he is there for about two and a half hours.

With this as my first official entry I shall say good night, and look up other stuff I have written about Mason and post it in the near future. Bye!

Mason on the ketogenic diet

We have completed the second day of the ketogenic diet. We have to be at Childrens Hospital four days in a row for most of the day for teaching the parents and watching Mason closely as his body adjusts to the changes. He fasted for part of the first day, and had a special drink (tiny amount) for lunch and later for supper at home. The ratio of his food is about 90% fat with the remaining 10% consisting of a combination of carbohydrates and protein. He will have whipping cream, butter, and oil in each meal, along with small amounts of certain veggies and meat, egg, or cheese. Everything has to be weighed to the .1 gram. For example I prepared a beaten egg for him for supper. It weighed 47.4 grams, and he could have 41 grams, so I discarded 6.4 grams of the egg. Along with 33 grams of green pepper(about 1/3 cup), 11 grams of butter (about 1 tablespoon), 10 grams of canola oil (about one tablespoon), and 25 grams of whipping cream (36% had to be special ordered). Part of the whipping cream went into the "omelet" while the rest was mixed with a measured amount of water (fluids are limited, although a fair amount) a couple of drops of stevia sweetener (only certain brands allowed) and a drop of vanilla for flavor. I scraped the oil and butter with a rubber spatula from his plate at the end of his meal to feed it to him, to make sure he got the entire amount. It took me a long time to prepare it!! I have to test Mason's blood sugars for a few days (it's really good so far), as well as check hi urine for ketosis many times per day initially, then morning and bedtime on a regular basis after that. He reached the right level of ketosis this morning (ahead of schedule) so that he could have a full, real keto meal for supper. Otherwise he would not have been able to eat until tomorrow. The quick version, this diet tricks the body into thinking that it is starving, causing ketosis - a chemical produced when fat us burned for fuel. For unknown reasons, this seems to help some children with difficult to control seizures. If you are really curious there is more information at the following website. http://www.epilepsyfoundation.org/answerplace/Medical/treatment/diet/
A ketogenic story: http://www.jhu.edu/~jhumag/495web/fat.html
What a blessing it is that we have wonderful friends to take Asia and Sydney after school, friends and family to come along to the hospital, and others who are bringing meals. Today after I got home, I thought, "hey I would have been able to make supper, no problem!" then when Daryl and I didn't get to eat until 7 pm, I realized, no, I couldn't have done it today. So the combination of help and prayer, cooks up just the right concoction for what God knows we need!! As a 'refining fire' in our lives, this experience will require me to become extremely organized and structured. Eeeeeeeeeek!!!!!!!! My personality is the opposite, laid back and spontaneous. Mason will have to eat at certain times, and the rest of us will have to be very careful in what we eat around him, including food preparation. It will be a lot of work yet, but worth it in the end when we find out one way or another if this is the answer. Thanks again for your thoughts and prayers!!!!! Shirley

April 2004

April 2004

Mason has just turned 5 and has been registered for Kindergarten for September of 2004. He is eligible for all day kindergarten where he will remain in the regular classroom for the morning and have lunch and a nap and the afternoon in the Special Needs classroom. He is so ready for it. Currently he is in pre-school three mornings per week, and is quite bored at home when the girls are not here. His Epilepsy continues to keep one step ahead of the doctors. He has recently started his tenth treatment. Currently he is on three medications and continues the VNS. In June of 2002 Mason had surgery to implant a Vagal nerve stimulator in an attempt to control his seizures. This is like a pacemaker under his skin in his chest, wired to the Vagal nerve, sending electrical impulses to his brain every few minutes. (look at May 2000 update) They were reduced for a time, but as in all of his meds, the seizures increased again. A year ago we attempted alternative therapy with Mannatech supplements which very quickly quadrupled the number of daily seizures. Over the years we have had many suggestions in alternative treatments, but none are formally documented, so we usually stay away. Some work for some, but we won’t be attempting anything else unless closely supervised by our Neurologist (Whom, we have found out recently, is world renown for her work. We are thankful to God who has provided us with the best!)

The number of Mason’s seizures varies from week to week, month to month. He has not gone a day without one for . . . I can’t even remember. December 2003, on new meds, he went down to one or two per day. That was wonderful! After gradually changing in length and appearance for about eight months, shortly after we moved this fall, his seizures suddenly happened very quickly and became more intense. When he started falling with them last spring he would buckle first and land in a sitting position. Now he would suddenly drop and usually hit his head on the floor. He was having from four to six or more per day, and began wearing a helmet most of the time. Right now he is not wearing a helmet because the new meds have slowed down the seizures enough that Mason sits when he feels it coming on. That’s my theory, anyway. March update on seizures: after having the flu, Mason had three days in a row without me seeing a seizure. That hasn’t happened in at least three years.

As of April 10, we increased meds again, as Mason’s seizures have once again been changing, slowing down, but longer in time. He has also added a new one in the last couple of days. Long blinks. I know they are seizures because of the way the rest of his face gets this blank look or the way his eyes move just before or after the blink.

We had the opportunity to build a house last year. Our previous home sold very quickly, so off we were designing and building. Moving into our new house was quite a pleasant experience in spreading our wings! You can imagine!! We designed this house pretty much around Mason and his abilities and disabilities. His ability to pick locks and escape inspired us to put keyed locks on all the doors on the main floor, including double keyed dead bolts. Mason’s ability to climb as high as possible, has our dining table in storage at Auntie Kim’s place. We designed the kitchen in such a way that we have a raised eating counter that seats seven or eight comfortably. The open design and well placed mirror allows us to know what our trouble maker is up to quite easily. Mason’s room is on the main floor facing the street, where all the activity entertains him when he is ‘supposed’ to be sleeping. Our bedroom is also on the main floor so that I can quickly get to him at night when he is up. The girls’ bedrooms are upstairs, and I must say that they are quite enjoying their own space. The stairs are gated so that Mason can’t go up the stairs but it also gives a place for Asia and Sydney to play with their stuff and protect it from their destructive little brother. Going outside is just one small step into a flat back yard, so Mason will be able to play outside on his own, yet still in full view from inside. And as much as we have made it a ‘Mason proof’ home, he continues to find and conquer new challenges.

Although it’s been quite a while since I updated this web site, I thank you for visiting again. Thank you for your thoughts and prayers, for without them we would not be where we are right now.

May 2004

A quickie update about Mason. After doing quite well for nearly three months (only 1 - 3 seizures per day and sleeping through most nights - new meds since December) Mason’s seizures have been getting worse, so we have increased the newest med, but behavior and extreme emotional issues have developed. Extremely cranky or extremely hyper. We cannot take our eyes off him for even a few seconds at this time. Recently he climbed up the outside of the stairs as high as the second floor. ( although we thought of almost everything in designing this house, we missed one or two things) I ran up quickly, grabbed him, brought him back down, and a minute later he attempted it again. Absolutely no fear or sense of danger. He quite enjoyed it up there. It left me shaking for quite a while, and I cried many times throughout the day.

The next thing on our agenda is trying the Ketogenic diet. Basically it is 90% fat, derived from foods like whipping cream, butter, eggs, bacon, mayonnaise etc. Everything he eats or drinks is weighed to the gram and eaten at specific times. Eating even a cracker would through the whole thing off. Their success rate is in the range of 10 - 15 percent. We will begin June 21 and will be going in to Childrens Hospital for the first four or five days all day for training and watching Mason closely. They used to keep the kids overnight during the first week, but is now on an outpatient basis.

Mason’s seizure “type” is beginning to change, which is expected with Infantile Spasms (IS), his initial diagnosis. The neurologist said it is looking like it’s changing to Lennox-Gastaut Syndrome. The prognosis is about the same as IS, and not a surprise to us.

As for the girls, Asia made the Rep Soccer team (where they play other cities) for next year. It means more driving for us, but it’s something she really wanted. Sydney has also decided to continue playing soccer. I don’t know if she’ll love it as much as Asia does, but Sydney’s best friend is playing, so . . . . . Both girls continue to be incredibly great big sisters to Mason.

Spring 2004

Spring 2004

Mason’s development has progressed a lot from where we stand. In three years he has gained about three months in age and abilities. We are so thankful that he has not regressed. The seizures continue to interrupt his patterns of learning so he tends to get stuck in typical 1 – 2 year old type phases for great lengths of time. He gets quite good at some of the little quirks like manufacturing burps. But it’s better than the ‘screaming to hear his own voice’ stages! A lot of climbing and exploring is on his daily agenda. Pre-school, and daycare before that, have been quite beneficial to him in learning behavior in the classroom and imitating his peers.

Mason is making tiny steps of progress. It all depends on how many seizures he has and how well he is sleeping. He has been sleeping a lot better this spring, sometimes even through the night. For the last three and a half years, his sleep has been interrupted by one or two seizures each night. But as his development progresses, he understands a little more and picks up a new word every few months or so. He is also getting more mischievous as he becomes more alert. Climbing as high as he can, checking the locks to try to escape (which happened the other day. We found him in the van on the driveway.) We have to keep an eye on him constantly. With a sense of adventure, trying new and practiced things with no fear or comprehension of danger, well . . . lots of work is what Mason is.

like ‘outside’, he bolts to the back door and starts crying if we don’t let him out. Other words that have the sThese past couple of weeks have brought us very nice weather and the kids have played outside a lot. Now we have had to start spelling a few words around Mason because he actually understands, quickly, some of the things we say!!! If we say words ame effect: ‘bath’ – runs to the bathroom door, ‘bye bye’ and ‘let’s go’ – cause him to hang on to his jacket or shoes if he can get them and sit and cry at the door to the garage. ‘Breakfast’, ‘lunch’, ‘snack’, and ‘eat’ and he’ll be standing crying at the gate to the kitchen. So he’s getting it! We are in the very early stage of using a Picture Exchange Communication System, where he has to give us the picture of what he wants (totally initiating it himself) before we give it to him. His speech is still very limited, but he babbles a lot lately. It sounds like conversation, but no real words other than and emphatic “no, no!”. Hmmm, does he hear that a lot?

We are still investing heavily into diapers, although we did have one little glimmer of light at the end of the tunnel. On his fifth birthday, Mason peed on the toilet at preschool after seven months of attempts each preschool day. It shocked him as much as anyone!
So the progress is there, discouragingly slow most of the time, but we are moving forward!