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.