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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

Latest EEG

We had our EEG last Friday, however, his doctor was not in, so the results were not read. Matthew had a rough seizure day Saturday, but Sunday seemed to be better. Chris and I were ready to take him to the ER on Saturday if he had one more, but he didn't. He continues to roll on his tummy and want to stand all day, so the seizures do not really interfere with his development. With that being said, he did have a few that made him cry over the weekend.

EEG

As mentioned in prior blog, Matthew is having small seizures. We have increased his Keppra twice. This did not seem to help. Two days ago we introduced another mediation, Tegatrol. The Ped Neuro also squeezed us in for an urgent EEG today. We'll see what that read.

On a positive note, Matthew continues to flip himself. He gets flat on his belly & still gets stuck. When he's not flipping himself on his belly, he wants to stand. He is getting stronger in the legs. He would be happy if we could hold him up for hours while he stands. We can't really put him in an exer-saucer yet bc he does not have good head control, although, he is starting to get it back.

Myoclonic Seizures

We saw the Neuro yesterday. I had captured some of the suspected seizures on my digital camera (video setting). Dr. R said they were myoclonic seizures. We increased his Keppra and we have a follow up in two weeks with an EEG.

Here's some info from Epilepsy.com:

"What are they like?
Here's a typical story: "In the morning, I get these 'jumps.' My arms fly up for a second, and I often spill my coffee or drop what I'm holding. Now and then my mouth may shut for a split second. Sometimes I get a few jumps in a row. Once I've been up for a few hours, the jumps stop."

How long do they last?

They're very brief jerks. Usually they don't last more than a second or two. There can be just one, but sometimes many will occur within a short time.

Tell me more

Myoclonic (MY-o-KLON-ik) seizures are brief, shock-like jerks of a muscle or a group of muscles. "Myo" means muscle and "clonus" (KLOH-nus) means rapidly alternating contraction and relaxation—jerking or twitching—of a muscle.
Even people without epilepsy can experience myoclonus in hiccups or in a sudden jerk that may wake you up as you're just falling asleep. These things are normal.
In epilepsy, myoclonic seizures usually cause abnormal movements on both sides of the body at the same time. They occur in a variety of epilepsy syndromes that have different characteristics:
Juvenile myoclonic epilepsy: The seizures usually involve the neck, shoulders, and upper arms. In many patients the seizures most often occur soon after waking up. They usually begin around puberty or sometimes in early adulthood in people with a normal range of intelligence. In most cases, these seizures can be well controlled with medication but it must be continued throughout life.
Lennox-Gastaut syndrome: This is an uncommon syndrome that usually includes other types of seizures as well. It begins in early childhood. The myoclonic seizures usually involve the neck, shoulders, upper arms, and often the face. They may be quite strong and are difficult to control.
Progressive myoclonic epilepsy: The rare syndromes in this category feature a combination of myoclonic seizures and tonic-clonic seizures. Treatment is usually not successful for very long, as the patient deteriorates over time.

Who gets them?

The epileptic syndromes that most commonly include myoclonic seizures usually begin in childhood, but the seizures can occur at any age. Other characteristics depend on the specific syndrome.

What's the outlook?

The outlook for patients with the various syndromes that include myoclonic seizures varies widely. See the specific syndromes".

rollin'

Matthew is learning how to roll. He has flipped himself from his back to his front a few times now. We keep practicing at home and with physical therapy. He continues to develop at his slow, little pace.

We are going to see his Neuro on Friday (1-23) regarding new possible seizures.

Seizures?

Over the past few days, we have noticed a slight change in Matthew's behavior. I think he's having very small seizures. It's so fast...it's as fast as a hiccup, almost like when you get startled. He'll be eating (lets say) and he does this startle thing. Then it's over. I suspect it's either a small seizure or some sort of spasm. I called his Neuro today and they said Dr. R has an appointment on Feb. 13. Great---we already have an appointment that day with him. We also have an EEG that day.

I got the "twitches" on video on our digital camera. I also got the gag/vomit thing. He'll be able to tell me if that's a seizure or not. If it gets worse, I'll call back and/or go the Ped. ER.

One year check-up

Matthew had his one year appointment today. He weights 27 lbs 9 oz & is 34 inches long. He is off the charts for height, but a little under weight (in the 95% range)--nothing to be concerned about. I did ask about his nutritional needs because he's not your typical 1 year old. I asked if we should switch to whole milk or try the second stage formula. Typically at 1 year it is time to stop formula and switch to milk. She said typically she does not suggest the stage 2 formula, but because of Matthew's needs, she suggested speaking with a nutritionist. Matthew lost a little weight, but she thinks it is because he's more active...kicking, wiggling, etc. She is referring us to a nutritionist.

His head is a normal size. His soft spot is closing (which is normal for this age) so we will continue to wear the helmet until it closes. His head is slightly misshapen still, but it's not bad.

Dr. Wilert feels that Matthew has a "retractable testicle". Which, pretty much is what it sounds like. We can sometimes find it, but other times, it...well...retracts. My guess is, if he was sitting up, gravity would be on his side. She has referred us to an Urologist. We will also address his catheter-related injury (Which is fine, but we want to make sure his urine stream is ok...it's hard to tell when he wears a diaper if he can pee normal)

I have been reading on Matthew's Infantile Spasms (IS) and I found some information that it might be linked to immunizations. . This is not confirmed and when I asked Dr. Wilert today she gave an answer that seemed to be somewhat programmed, "We do not feel there is a link". She was very PC about it and was sincere. I asked her if she felt it could be genetic. Since we are pretty sure it wasn't an injury or trauma at birth, we want to make sure it's not genetic. She did not feel it was, but I did ask if she could refer us to a Generic’s Counselor. We want to have more kids, but we want to make sure it's not going to happen again. She told me the closest Generic’s testing was at UAB. (University of Alabama, Birmingham). That's a 4 hour drive--each way. I guess we're going to have a mini-vacation.

We have a busy day, we have Physical Therapy this afternoon and I have some calls. Chris is home (sick) still, but he can't leave the house (military orders that he stays HOME) so he can't help me out and take him to PT. I'm hoping Matt naps soon so he won't be grouchy or sleepy for PT. We are going to get his new big-boy stroller this weekend and our Developmental Teacher (Eleanor) is going to bring us a catalog with ped. Medical equipment for a new bath tub. She said they make one that is made with PVC pipe and a sling. Sounds like that would work just fine. We might be able to get that covered from insurance BC it's medically necessary, so we'll see.

Since Matthew was born, we were not able to use certain toys of Matthew's. We had to avoid the toys that had a squeeker in them because it sounds so similar to Morgan's squeek toys. I've had this duck hanging on a toy that Matthew lays on and looks up at ( the first picture with Steve's cat Scooby). Well, I decided to give Morgan the squeeking duck. I mean, Matthew's not using it because we can't.

To say she is obsessed with the duck is an understatement. We do the normal of playing fetch with it. If one of the cats get near her when she has the duck, she growls and gets sassy by barking at them. She is 100% a brat. At night, when she wants to cuddle under the covers with us, she brings the duck! Who needs dog toys when you have a baby?

Back to the real world

I didn't realize how much traveling would screw up Matthew's schedule. We were pretty routine before vacation...Therapy on Tuesday, Wednesday, Thursday, misc appointment Friday and errands on Monday. We were up by a certain time, we KINDA nap around the same time and I am really diligent on giving his meds at exactly the same time (even though the doctor said I don't have to be). Arizona is only an hour behind Pensacola time. I thought it would be easy. I didn't feel like I needed to have Matt on AZ time, I'd just do everything an hour early.

That didn't really work. We'd be out late with friends, Matt wouldn't be tired until 11 PM Arizona time...That's MIDNIGHT Pensacola time. I don't know what was going on with him :)
Party boy, I guess. He'd sleep until 900 Arizona time (10 AM FL time!) and he'd only wake up because we would wake him for his three morning meds (usually I give one at 7, one at 8 and one at 10). Nope, in AZ he got them all at once.

I tried to give his meds at the same time, but not even close. I'd give them within 3 hours of when I usually gave them....and I'm usually not more than 10 minutes off. The good thing is, he's starting a new thing once we got home...going to bed in the 900 PM range. He's kinda been a night owl due to his medications, but it since we got home, he's been doing better.

The downside of him going to bed at 9? He's up by 630. Oh well.

He still wakes up once a night to kick and coo. It lasts about 20 minutes these days. It's better than him screaming, so I'll take it. He's still occasionally gagging and throwing up a bit. It's better. We have his one year check up in a week.

Christmas Pics

We are back from Arizona. We had a great time, we had a wonderful Christmas and a fun (pre) Birthday Party for Matthew. It was difficult to travel with a 30 pound baby. We have decided that we're probably not going to be able to hold Matt in our laps for travel anymore.