Ketogenic diet

We are going to start a diet that has been very successful with treating seizures that are uncontrolled, even with medications. We are waiting to schedule to learn hosw to do it. I got this information off of the Epilepsy Foundation website. http://www.epilepsyfoundation.org There are more resources and examples, but this is an idea of what to expect:

The ketogenic diet has special appeal to families because changing what a child eats seems like a more "natural" way of preventing seizures than taking pills.
But the diet is anything but natural. It is a highly unnatural choice of foods and it reverses the body's natural way of using food to gain energy. In fact, the ketogenic diet, like taking medications or having surgery, is a serious medical treatment.


It is not a "do it yourself" diet.

Trying to put a child on the diet without medical guidance puts a child at risk of serious consequences. Every step of the ketogenic diet process must be managed by an experienced treatment team, usually based at a specialized medical center.


Working with a Dietitian

When children (or adults) are treated with the ketogenic diet, the dietitian is a very important member of the medical treatment team. The dietitian works out how much of one type of food or another should be served together to make the diet work. He or she helps the family plan the child's meals, and works out how many calories the child needs for healthy growth.
Meal plans serve small amounts of fruits or vegetables (carbohydrates) and meat, fish or chicken (protein) with lots and lots of fat (such as cream, butter, eggs, or mayonnaise), and no sugar.

The following sample meal plans provide a general idea of the kinds of foods that are part of the diet.

Breakfast
Scrambled eggs with butter
Diluted cream
Orange juice

Lunch
Spaghetti squash with butter and Parmesan cheese
Lettuce leaf with mayonnaise
Orange diet soda mixed with whipped cream


Dinner
Hot dog slices with sugar-free catsup
Asparagus with butter
Chopped lettuce with mayonnaise
Sugar free vanilla cream Popsicle

These examples don't show the exact amounts of each food because those have to be worked out for each child by the dietitian. Each portion of food must be prepared very carefully by the parents, who often use a gram scale to weigh items exactly.

That's because a tiny mistake in weighing and measuring foods (or if a child finds and eats a few cookie crumbs, or puts anything containing sugar -- including medicines and toothpaste -- in her mouth), can break the diet's effects -- and cause a seizure.

The child is placed on a 24-hour fast and is closely watched to be sure he or she is handling the very real stress of not getting any food during that time.
Once the child begins burning fat for energy instead of glucose (a state called ketosis), the doctors gradually introduce the foods that are part of the diet in amounts that are right for that child.

When the child goes home, the parents continue to carry out the diet at home, weighing every item and making sure that the balance between fat and other nutritional elements is maintained. Doctors and dietitians follow children closely to make sure they're getting enough nutrition and are growing.

Parents of children on the diet use special paper strips to check the ketone level in the child's urine.

Ketones are the chemicals that the body produces when it burns fat. Parents also test urine weekly for blood, which could be an early sign of kidney stones, a possible side effect of the diet.

Update...

It's been awhile since I have updated the current situation. Things have been busy out here in Phoenix. Chris remains in Pensacola while Matthew and I stay in Phoenix. My grandpa recently passed away and a month later my aunt passed suddenly from a stroke. I do not have my lap top and Matthew does not nap like he used to, so to get online for more than a few minutes can be challenging.

The reason why Chris is still in Pensacola is because we had an adoption pending with a child in the foster care system. Unfortunately, that is currently falling though. The silver lining to that is, Chris and I can soon be living together again. There is a program in the military that basically states we cannot be stationed where Matthew's needs cannot be met. We are able to start to look into this and hopefully in a month or so we will be stationed together.

Matthew is getting excellent care in Phoenix. We have a good doctor, great therapist and great case managers. His PT said he continues to improve and do better each week. We are still very behind, but we are still improving.

Matthew's seizures continue on a daily basis. Some days we have a few, but most days I see them every time he wakes up. This could be a 10 minute cat nap or middle of the night. We have been trying new medications, which help, but we cannot seem to get rid of them.

Our next appointment with the neuro is Oct 8th.

Some Pics from AZ

Just finished breakfast.

Rolling around

His hair is getting so long, but Chris doesn't want to miss his 1st hair cut!

Mallory the Monkey is his new BFF. He loves to look at her.

Steve in the pool with Matt.

Matt and I sitting on the steps

Morgan is assessing the ferret situation with Scooby. She remembers that the ferret bit her when she was a puppy, 4 years ago. The cat and ferret are buddies.

New Meds..etc..

Matthew has been on the new medication, Banzel, for over 4 weeks now. He still is having multiple seizures daily. He seems to be focusing on toys and people better. He has an appointment at Phoenix Children's in about a week, but I didn't want to wait that long. I spoke with the doctor yesterday and he is going to add another medication, Lamictal. I am familiar with this medication from working in psych. I am aware of the side effects and the "lamicatal rash". This is a medication that you start at a very low dose and slowly work up to the full dose. We will have to go to a special pharmacy (compound) initially to get the small dose formulated.

Matthew went swimming in a friend's pool over the weekend. He had a very good time. He cannot sit up yet, which is a bit tough when you're in the pool. I sat on the steps mostly with him and he did well. He wanted to stand a lot, too. The problem is when he stands (with help), he flings his body back. He does the same action that he does when he's on his tummy~kind of like a cobra. It's good when he's on his belly, but not standing or sitting. This is something that can be addressed by a physical therapist.

Speaking of PT, we have had some in home evaluations and we have been referred to the DD system. (developmentally delayed) I believe this is a Federal program and they will make sure Matthew's needs are taken care of. Once he's in this system, he will be in this system for life. They will help provide equipment he may need, services and referrals. I believe they do not go through insurance and it is no cost to us.

We see improvements with Matthew, but again, it's a very slow process. We look forward to him sitting up. It will be so much easier for me...When I go to the grocery store, I have him in the stroller and I pull the shopping cart. When we go out for dinner, I have to haul him in our jogging stroller.

EEG results

The results of our 24 hour EEG showed that Matthew is having a lot of seizures. We already knew that, however, we learned that his seizures are all over the brain. They used to be mostly in the visual part of his brain.

The doctor suggested that we follow up with an Epilepsy doctor instead of a regular Ped. Neurologist. Epilepsy doctors mostly deal with seizures, Ped. Neuro's deal with anything brain related (headaches, Cerebal Paulsy, etc). He said that Matthew may have to deal with seizures the rest of his life. The dr took him off his Tegatrol. He said that Tegatrol may increase seizures, especially the type that Matthew has. We are also discontinuing the medication that he was put on when we got here from the Ped. Neuro at Children's (Depakote). He said that it doesn't seem to be working and it has bad side effects (1 in 600 get liver damage). We have started a new medication called Banzel. It has been FDA approved for about 1 year now.

The doctor gave us options about a Vagus Nerve Stimulator implant and discussed the Ketogenic Diet. The doctor was very good, I feel very comfortable with him, but he suggested that whom ever we decide to see long term work with us on those options.

The doctor used to work in Birmingham, AL. He was familiar with our Ped. Neuro in Pensacola because Birmingham was the closest Epilepsy doctor to Pensacola. That's a 41/2 drive each way. We are looking into our options about seeing what we can do so Matthew can be followed up by a Ep dr and not have to drive 9 hours round trip, especially because if we do the Vegus nerve or diet, he will have to be monitored very closely.

Opthamologist

One of the many doctors we saw in patient was a opthamologist. When people gather Matthew's history and I explain that he is not tracking/looking at us well, they ask if he's ever seen an opthamologist. I always say no, but nobody ever has followed up with suggesting an exam.

The RN came in the room at 5AM to dilate his eyes and by 610 AM, the opthamolgist came in. I'm sure I looked great. He examined Matthew's eyes and he said there is no damage to his eyes nor any structural damage.

The opthamologist said that Matthew would be a candidate for the organization Center for the Blind. The doctor said he hates the name of the organization because it's for anyone visually impaired.

The organization has already contacted me and they will be coming in my home to do an assessment to see if they will be able to help with visual therapy/activities.

Phoenix Children's~Day 1

Wednesday we got the call that there was a bed available at the Epilepsy unit for us. Once we got checked in and admitted, they started the EEG monitor right away. It was video recorded, so the lights had to be on the whole time, including at night. There was a button I was supposed to push when he would have a seizure, that way when the doctor reviewed the EEG, he could see exactly where the seizures were to help pinpoint them.

Matthew saw several different doctors. He saw a general pediatrician, Epilepsy doctor, eye doctor, several residents and genetics doctor. The genetics doctor wanted to take more samples than we had done in Mobile. Luckily I had a business card for the Genetics doctor we saw in Mobile, so they were able to coordinate. The staff all thought I was very organized. It was luck, I never took the card out of my wallet from the appointment.

Steve came and visited with us for a few hours. The Patient Care Tech sat in our room while Steve and I went to the cafeteria to get dinner (which was pretty good for being hospital food). I was unable to leave Matthew alone at all while he was on the monitors, so if I needed to go get water next door or anything else, I had to call someone in to sit with Matthew. Staff were always nice and made it very easy to ask for help.

Matthew was teething horribly. He cried so much his voice went horse. He didn't mind the EEG electrodes on his head, but he was pretty cranky in the evenings. A social worker came in to see us and Matthew was having a meltdown. I don't know what she really said, but she seemed like she had one foot out the door to go home for the night anyway.

The day flew by, except for the teething meltdowns. We had a room to ourselves, so it was nice not to have to share with another patient. It was set up for two patients, so we had a large room. I had to remember anything I did, was on camera, sound too.


Matthew was not too hungry, but he did drink his milk. Neither Matt nor I slept well that night. He would wake up a lot and I had a hard time sleeping because (1) of the bring lights and (2) random noises/phone ringing/people talking at the nurses station.