Maybe now that I have a laptop of my own, I can get back on this blog :)
Over the past few months Matthew has been on the ketogenic diet. It's a lot of work for me to prep & plan meals. Everything is so exact. 35 oz of 36% heavy whipping cream (that's about 2 oz) per meal. I have to plan my day out & plan if we will be out of the house for meals...then pack everything to go. It's not always easy to feed a 2 year old turkey with canola oil & veggie for lunch on the go, esp cold.
4 weeks ago Matthew got sick. Before this he was having one seizure per day. He is still sick and now has regressed a bit & has 10-30 seizures per day. The seizures are usually myoclonic, so they may last 1 second to 15 minutes of clusters. He has had several tonic/clonics (aka grand mal) and needed rescue Valium. CVS knows us well and I don't have to give my name when picking up meds. It's a mixed feeling....slightly embarassing, but kinda neat. I feel like I need to tell them we're moving out of state so they don't worry.
We started antibiotics yesterday for a possible sinus infection. Hopefully this will clear out the bug & by the time we move to Scott AFB (May 14) he will be better & seizures under control
Thursday, April 29, 2010
Thursday, November 12, 2009
Mini Update/Nov
New Kiddie Kart to the left.... sleeping during therapy
We went to the neuro yesterday at Phoenix Children's Hospital. In the past month,we have not seen a significant improvement. Usually I try to be optimistic when I talk to the doctor, but fact is, we're still having over 30 seizures a day. Most are quick, but sometimes they happen in cluster.
The good news is, Matthew sleeps through the night, most nights. He is an early bird and I'm lucky if I get to sleep in until 6 AM. We go to be usually around 9, so as long as I go to bed with him, I'm ok (It's not always easy, when he's asleep it's a chance to do a few things around the house)
The doctor discussed putting him on the ketogenic diet. Again, at this point, I'll try anything. I may not love the idea, but if it improves his well being, I need to try. However, when I talked to the dr he suddenly was not wanting to start the diet. He knows that we are trying to get stationed either in Phoenix or St. Louis area. (Chris is still in Pensacola, we have been apart for about 5 months while I get Matthew better health care in AZ). Dr when you start the diet, there is a lot of follow up, labs, etc. It can have side effects on the body as well, so it needs to be monitored. He said he wants us to be in AZ at least 3 months to commit to diet. The thing is, I was ready to start the diet months ago, but he said the same thing, even though I told him I'd be in AZ until AT LEAST end of Nov/Dec.
We are continuing to play with meds. His current medications include:
Topamax
Lamictal
Depakote (although, coming off)
Klonapin PRN when he has bad clusters, even though it's supposed to "knock him out"...he doesn't even nap! Oh, and it doesn't usually stop seizures either
We are starting Prednisone. He was on it over a year ago, but his seizures were different then. We are trying it again. It's a short term med (only 1 month) because it's a steroid.
These are some past medications we've tried:
Keppra
ACTH (worked great but can't be on it long term...this is the only med that cleared his seizures)
Tegatrol
Banzel
We follow up with Neuro in 3 weeks.
Matthew has his kiddie kart now and has been making huge improvements with neck strength.
Thursday, October 15, 2009
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.
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.
Wednesday, September 30, 2009
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.
Friday, July 10, 2009
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.
Wednesday, July 8, 2009
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.
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.
Monday, June 22, 2009
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.
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.
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