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.
Monday, June 15, 2009
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.
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.
Sunday, June 14, 2009
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.
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.
Thursday, May 28, 2009
http://www.phoenixchildrens.com/medical-specialties/childrens_neuroscience_institute/ped-epilepsy-program.html
I tried to paste that link in the blog, but it wouldn't allow me. That is the program that Matthew is going to be going to the week of June 8th. The clinic called me and offered us to come in next Tuesday (June 2nd). Normally I would be able to drop everything and go, however, my parents are flying into Arizona to visit with Matthew and me. They are only staying until Friday AM, so Matthew and I will be going in the following week...June 8th.
They admit 5 patients Monday morning. Some patients stay for 24 hours, other stay up to 5 days. As soon as a bed becomes available, they will contact us...most likely that Tuesday AM, after they discharge patients.
I will have to stay with Matthew 24 hours a day. It's not a big deal, I would do it anyway.
He has been on the new medication (Depakote) for about 15 days now. I feel it is helping, but we're still seeing seizures daily. They do not seem to be as intense.
Matthew is mastering rolling. In fact, I can't leave the room for more than a few minutes or he'll roll into the table or couch and bump his head.
They admit 5 patients Monday morning. Some patients stay for 24 hours, other stay up to 5 days. As soon as a bed becomes available, they will contact us...most likely that Tuesday AM, after they discharge patients.
I will have to stay with Matthew 24 hours a day. It's not a big deal, I would do it anyway.
He has been on the new medication (Depakote) for about 15 days now. I feel it is helping, but we're still seeing seizures daily. They do not seem to be as intense.
Matthew is mastering rolling. In fact, I can't leave the room for more than a few minutes or he'll roll into the table or couch and bump his head.
Luke Air Force Base Case Manager
I talked to Matthew's C.M on Tuesday. What a difference from the C.M in Pensacola who never followed up with us when we asked for help! Dianne got the scoop from the EEG & Neuro appointment. She seemed a bit frustrated with the result. She was happy that Matt was referred to the Epilepsy Clinic and said she's call them when we got off the phone so she could get the status of referral (by they way, the Epilepsy clinic called me within hours of me talking to Dianne).
Dianne felt that we are at the highest level of care at Phoenix Children's Hospital. She felt that if we do not get a good plan of action/results from the Epilepsy Clinic, she will help us to get to the next level of care. That level of care would probably be some sort of Neuro Institute....maybe in California. She said that our insurance will pay for the flight, hotel, food, etc because we have exhausted our options in Phoenix. There is another hospital out here that has a Ped. Neuro department, but it is equal to PHC, so instead of going there, we'll go to the next level up.
I am so relieved. I finally feel like we are going forward. Dianne told me that in Pensacola, we could have our insurance help us get to the next level of care (most likely Miami). I had no idea, so this did frustrate me a bit, but I'm glad we came to Arizona because I truly feel that we are on the right road now.
Dianne felt that we are at the highest level of care at Phoenix Children's Hospital. She felt that if we do not get a good plan of action/results from the Epilepsy Clinic, she will help us to get to the next level of care. That level of care would probably be some sort of Neuro Institute....maybe in California. She said that our insurance will pay for the flight, hotel, food, etc because we have exhausted our options in Phoenix. There is another hospital out here that has a Ped. Neuro department, but it is equal to PHC, so instead of going there, we'll go to the next level up.
I am so relieved. I finally feel like we are going forward. Dianne told me that in Pensacola, we could have our insurance help us get to the next level of care (most likely Miami). I had no idea, so this did frustrate me a bit, but I'm glad we came to Arizona because I truly feel that we are on the right road now.
Phoenix Children's Appointment
We were so excited to go in and see the DR. We got there a bit early, however, she was running 45 minutes behind. Matt was still sick with a cold, so it was a long afternoon.
The Dr came in. She seemed friendly. She got a brief history~I offered her a copy of Matt's medical records from FL and she was not interested. She basically said there are enough papers floating around the office, they don't need more. That kind of bothered me, but I guess she's just being honest, right? She received two phone calls during the appointment. I understand they were crisis calls, but it still bothered me. She discussed the medication Depakote and I agreed to try the medication.
She turned to me and said, "OK, follow up in 4 months". Whoa...wait a minute. 4 months?! I want to be back home in FL by then. I explained we aren't in PHX long term. She knocked the appointment to 2 months. In my head I had already decided to call my case manager to discuss this, so it didn't matter. I'd either ask to switch to another doctor or just reschedule the apointment myself for a month. She said she was thinking about referring him to Epilepsy clinic and for an EEG. She wasn't sure, but I interrupted and said we'd be interested in that option.
Depakote in a good medication, but it isn't usually prescribed to kiddos under 2 years old. Although Matthew is the size of a 4 year old, I was still concerned and bothered that she didn't want to follow up until 4 months. It can cause liver damage and weigh gain. So far it hasn't changed his appitite, he still is a light eater...Thank goodness because he's over 30 pounds...just tall and thin.
We got our EEG a week later and two days after that, the Dr personally called me to discuss the results. Maybe we got off on the wrong foot? She wanted me to call her a few days later to update her on his progress with the Depakote.
The Dr came in. She seemed friendly. She got a brief history~I offered her a copy of Matt's medical records from FL and she was not interested. She basically said there are enough papers floating around the office, they don't need more. That kind of bothered me, but I guess she's just being honest, right? She received two phone calls during the appointment. I understand they were crisis calls, but it still bothered me. She discussed the medication Depakote and I agreed to try the medication.
She turned to me and said, "OK, follow up in 4 months". Whoa...wait a minute. 4 months?! I want to be back home in FL by then. I explained we aren't in PHX long term. She knocked the appointment to 2 months. In my head I had already decided to call my case manager to discuss this, so it didn't matter. I'd either ask to switch to another doctor or just reschedule the apointment myself for a month. She said she was thinking about referring him to Epilepsy clinic and for an EEG. She wasn't sure, but I interrupted and said we'd be interested in that option.
Depakote in a good medication, but it isn't usually prescribed to kiddos under 2 years old. Although Matthew is the size of a 4 year old, I was still concerned and bothered that she didn't want to follow up until 4 months. It can cause liver damage and weigh gain. So far it hasn't changed his appitite, he still is a light eater...Thank goodness because he's over 30 pounds...just tall and thin.
We got our EEG a week later and two days after that, the Dr personally called me to discuss the results. Maybe we got off on the wrong foot? She wanted me to call her a few days later to update her on his progress with the Depakote.
Monday, May 11, 2009
Phoenix
The day after Chris was supposed to deploy, we got word that he was not deploying. We had already scheduled our utilities to shut off, my trip was planned and we were ready to go. We made the decision for Matthew and I to still go to Phoenix for treatment out there. Steve (Chris's best friend and the guy renting our house) drove across country from FL to AZ. It was a long trip with a sick baby. He had a bad cold and was throwing up. We made it though....3 days. We stopped twice for the night. We had to make frequent stops to feed Matt, change Matt and give him meds.
We have arrived in AZ and things are going well so far, except for our colds again. Matt was running a fever of 103.5 consistently for a few days. He was throwing up his seizure meds and Tylenol. I took him to Phoenix Children's Hospital (PCH) at midnight last Wednesday, well, actually Thursday. They were very nice there, but just said it was a virus and sent us on our way. I figured it was, but with his seizures medication, I'm always careful.
Thursday during the day, we got word that our insurance had been transferred. I contacted the pediatrician's office to start the referral process. The RN was very nice. She gathered a lot of history and referred us to a case manager. Later that day the CM called us and was more than helpful to plug us into resources out here. The RN also suggested that we got the PCH ER (again) this time complaining of increase in seizures. Matthew has had more seizures since we stopped the ACTH. She said this would help us get into PCH's neuro clinic faster.
So Friday we went back to the ER. It's about a 40 minute drive without rush hour traffic. They did some blood work and when they discharged us, they told us to contact neuro...they were referring us. I tried calling Friday, but was unable to get through.
I called back today (Monday). I was told the next appointment was mid June. I explained that we were just in ER and Matthew had already had 5 seizures this AM. (which was true). She said she could get us in the end of May. Although that's 2 weeks away, I wasn't happy. I called Matt's CM and she got us in this Wednesday.
We have arrived in AZ and things are going well so far, except for our colds again. Matt was running a fever of 103.5 consistently for a few days. He was throwing up his seizure meds and Tylenol. I took him to Phoenix Children's Hospital (PCH) at midnight last Wednesday, well, actually Thursday. They were very nice there, but just said it was a virus and sent us on our way. I figured it was, but with his seizures medication, I'm always careful.
Thursday during the day, we got word that our insurance had been transferred. I contacted the pediatrician's office to start the referral process. The RN was very nice. She gathered a lot of history and referred us to a case manager. Later that day the CM called us and was more than helpful to plug us into resources out here. The RN also suggested that we got the PCH ER (again) this time complaining of increase in seizures. Matthew has had more seizures since we stopped the ACTH. She said this would help us get into PCH's neuro clinic faster.
So Friday we went back to the ER. It's about a 40 minute drive without rush hour traffic. They did some blood work and when they discharged us, they told us to contact neuro...they were referring us. I tried calling Friday, but was unable to get through.
I called back today (Monday). I was told the next appointment was mid June. I explained that we were just in ER and Matthew had already had 5 seizures this AM. (which was true). She said she could get us in the end of May. Although that's 2 weeks away, I wasn't happy. I called Matt's CM and she got us in this Wednesday.
Monday, April 6, 2009
Smiles & Small Pox
Chris received his small pox vaccine (among others) recently. However, with S.Pox, it is an open sore, this means that it is potentially contagious. It is recommended that Chris avoid Matt & me to decrease his chances of exposing us. They told him to leave it covered at work to reduce spreading but to keep it uncovered as much as possible at home to help it dry out and close up. It takes four weeks for him to be safe around people. He leaves in less than two. I have been changing diapers, baths, etc. If Matt didn't have such unique needs, it wouldn't be as challenging. but it is what it is and we have been busy.
The silver lining is Matthew has been in better moods. We increased his Tegatrol again and it seems to be helping over. Yes, we still see seizures, but they are decreasing from two weeks ago.
Tuesday, March 31, 2009
Genetics
After about a two month wait, we finally got to go to the Genetic doctor. I had no idea what to expect. The facility is located on University of South Alabama. I have never drove in Mobile, so I was nervous for that. Our appointment was at930 AM, so I figured we'd hit rush hour (rush hour in Mobile is a piece of cake compared to rush hour in Chicago & Phoenix). I woke Matthew up at 700 AM. I was hoping he'd sleep in the car...nope...but he was in a great mood. He was giggling in the back seat.
The RN took us to a room and gathered Matthew's history. She weighed and measured him...30 lbs, 36 inches. The Dr came in and did a physical exam, gathered a bit more history and discussed our next steps. They need a DNA sample (blood) from Matthew. He said that we may have results within 3 weeks. He said that might not tell us if it is genetic, though. It MAY just show a mutation in his gene that caused the Infantile Spasms. If they are unable to determine if it is genetic, they will need to test Chris and me.
They wanted us to follow up in 3 months, but we will be living in Arizona while Chris is deployed. We will communicate by phone and follow up in 4 months.
We had to drive to a hospital (Univ S. AL Women's & Children's Hospital) for a blood draw. Matt's never had a blood draw from the veins in the arm. Before when he needed blood, they were able to prick his foot and get a sample that way. We had to register at the hospital in admission..which I thought was strange for a lab draw. I didn't understand why we couldn't just give them my insurance card, but they now know my work address, Chris's work address, etc. Anyway, we go to the lab and two ladies get Matt ready for lab draw. I couldn't see what was going on because they were standing next to him lying on the bed. I didn't want to see him get the labs. I hear Matt start to giggle. I hear the ladies say, "look at his smile". He's flirting with the ladies. He didn't even cringe with the lab stick...they had 6 tubes to draw, too. He did great. He did better than me.
The RN took us to a room and gathered Matthew's history. She weighed and measured him...30 lbs, 36 inches. The Dr came in and did a physical exam, gathered a bit more history and discussed our next steps. They need a DNA sample (blood) from Matthew. He said that we may have results within 3 weeks. He said that might not tell us if it is genetic, though. It MAY just show a mutation in his gene that caused the Infantile Spasms. If they are unable to determine if it is genetic, they will need to test Chris and me.
They wanted us to follow up in 3 months, but we will be living in Arizona while Chris is deployed. We will communicate by phone and follow up in 4 months.
We had to drive to a hospital (Univ S. AL Women's & Children's Hospital) for a blood draw. Matt's never had a blood draw from the veins in the arm. Before when he needed blood, they were able to prick his foot and get a sample that way. We had to register at the hospital in admission..which I thought was strange for a lab draw. I didn't understand why we couldn't just give them my insurance card, but they now know my work address, Chris's work address, etc. Anyway, we go to the lab and two ladies get Matt ready for lab draw. I couldn't see what was going on because they were standing next to him lying on the bed. I didn't want to see him get the labs. I hear Matt start to giggle. I hear the ladies say, "look at his smile". He's flirting with the ladies. He didn't even cringe with the lab stick...they had 6 tubes to draw, too. He did great. He did better than me.
Friday, March 13, 2009
EEG & Kirghizistan
Yesterday we had another EEG. Our last 2 EEGs (10 days ago& a month) showed hypsarrhythmic which is a symptom of Infantile Spasms. We started the ACTH a month ago to treat this irregularity. His EEG yesterday showed that he no longer has hypsarrhythic EEG. The ACTH worked. Now the question is, when we discontinue the ACTH (it will take a month to wean him off) if his EEG will change.
His EEG still showed that seizures are present. We increased his Tegatrol and we are planning on still going to Children's Miami because as the doctor put it, "Matt's a tough case". We have no idea if we'll do surgery or if they'll just give us a second...well, third opinion.
April 20 Chris is being deployed for 120 days to Kirghizistan. Depending on where we are for Matthew's treatment w/ Miami, Matt and I will plan on going to Arizona (and stay in our house that never sold). Chris's brother is planning on moving to Arizona, this was announced last week. Now that Chris is leaving, all the more reason to go. I will have friends, family, support, an actual Air Force Base (not Navy like here) and access to Children's Hospital Phoenix. Our friend is renting our house and will be able to help me as well.
His EEG still showed that seizures are present. We increased his Tegatrol and we are planning on still going to Children's Miami because as the doctor put it, "Matt's a tough case". We have no idea if we'll do surgery or if they'll just give us a second...well, third opinion.
April 20 Chris is being deployed for 120 days to Kirghizistan. Depending on where we are for Matthew's treatment w/ Miami, Matt and I will plan on going to Arizona (and stay in our house that never sold). Chris's brother is planning on moving to Arizona, this was announced last week. Now that Chris is leaving, all the more reason to go. I will have friends, family, support, an actual Air Force Base (not Navy like here) and access to Children's Hospital Phoenix. Our friend is renting our house and will be able to help me as well.
Friday, March 6, 2009
March 2009
We have been on the two injection for a week now. Although I have seen some improvements, we still see some seizures. He is pretty moody, which is a big side effect. He is sleeping pretty well at night, it takes him until about 11 PM to fall asleep, but he is sleeping though the night mostly.
He has had an increase in appetite and elevated blood pressure. I take him to the Naval Hospital to his pediatrician's office to have his BP checked. Last Tuesday it was 134/75. The RN told me normal BP for a little guy is 100/60. I went the next day and his BP was normal. We'll continue to keep an eye on it and continue to get it checked.
Matthew's moods pretty much consist of whining. If I hold him, he does better. However, it's really hard to hold and cuddle a 30 pound little guy all day long. But, we do what we can.
We have our next EEG next week and we'll try to figure out the next step in our game plan while we wait for Children's Miami to contact us regarding the referral.
Matthew continues to work on his development. He can hold his head up for short times when we help him sit up. This is a HUGE step forward for us.
Thursday, February 26, 2009
EEG Update
Although we spend 4 hours at the Neuro's office yesterday, we did finally get our EEG. It was also "Botox" day at the clinic. While waiting for hours, I saw many handicaped kids waiting for their botox. For kids with tightened fists, feet, arms, etc, botox can help by relaxing the muscles.
Anyway, our EEG went well. I am not suposed to let Matt nap before EEG, so he will sleep. I can't feed him for four hours prior to EEG, either. It can be a challenge. He's not a big eater, so meals aren't a big deal, but put a kid in the car that hasn't napped....they will fall asleep.
We met with the Nurse Practioner after his appointment. She was shocked to see all of the medications a 13 month old is on. Keppra-3x day, Klonapin 2x day, Tegatrol 2x day, Topamax 2x day & ACTH injecion. We are still coming off the Keppra. We were almost off the the Klonapin, but now that he's on the ACTH again the Klonapin helps with his crankiness.
The EEG showed that there has been slight improvment. We have added another injection per day for two weeks. We will do another EEG in two weeks to follow up. The ACTH is not a long term medication. The dr put in a referral to Children's Hospital Miami to the neuro surgury department. When I asked what kind of surgury on the brain they would do, she wasn't quite sure. She said the Dr's in Miami would further discuss this with us...risks, benefits etc. It's not for sure we will do surgury, but we are going to explore that option. We may not have to look into that if our EEG is perfect in 2 weeks, but we'll see.
Tuesday, February 24, 2009
EEG Tomorrow
Tomorrow Matthew has an EEG to check the status of the ACTH. We started the ACTH 5 days ago. I do not quite see the results as I did before, however, before his seizures were much more severe. We are on 1/4 dose than we were before. He continues to have myoclonic seizures. I notice them mostly when he wakes up around 3AM. He is unable to fall back asleep because the seizures keep him up.
Tomorrow we will see what the EEG shows and consider our next step...which may be surgery or increase the ACTH.
Matthew had a great physical therapy session today. He was holding his head better and sitting up with support very well.
Tomorrow we will see what the EEG shows and consider our next step...which may be surgery or increase the ACTH.
Matthew had a great physical therapy session today. He was holding his head better and sitting up with support very well.
Thursday, February 19, 2009
Round 2, ACTH
We have had two urgent EEG's in the past 10 days. Unfortunately they are indicating that Matthew's Infantile Spasms are returning. The doctor said that most of his seizures are focal seizures. We are planning on doing a shorter regimen of the ACTH and doing a lower dose. We started the ACTH injections today. We will be doing one injection every day for two weeks. We are returning to the Dr for another EEG next Wednesday to see if his brain activity is returning to normal.
If it is not, the plan is to increase the dosage of ACTH. If we do this and it does not work, we are considering surgery for Matthew. The Dr recommends Children's Miami. We would be able to stay with my parents if we went there. Because his seizures are localized, this makes it a possible option.
If it is not, the plan is to increase the dosage of ACTH. If we do this and it does not work, we are considering surgery for Matthew. The Dr recommends Children's Miami. We would be able to stay with my parents if we went there. Because his seizures are localized, this makes it a possible option.
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