Infantile Spasms

So, got a call back from the neurologist. Right now, we don't know anything. But they've classified the seizures as "infantile spasms". They've decided to put him on some steroids with the hopes of making the spasms go away. (now he's on 5 different medications, each with different restrictions on when they can be administered based on feeding times and such--my wife is amazing! I have no idea how she keeps up on all of that!)

Now, being the knowledge seeking parents that we are, we searched out all we could find out about "infantile spasms" . . . and didn't much like what we found. The Child Neurology Foundation put out a pretty detailed pamphlet on infantile spasms. They are characterized by an specific, but irregular brain wave pattern called hypsarrhythmia--which isn't present with epilepsy. Unfortunately, hypsarrhythmia is also strongly associated with cognitive impairment.

Another website, epilepsy.com, gave a less than positive outlook. It did say that the earlier the spasms are stopped, the better the outcome, but if they are a cause of a brain disorder (such as having nerve clusters in the frontal lobe and under-mylenation on the nerve cells??), then they have a higher likelihood of moderate to severe retardation.

Like I said, we don't know anything. We're just looking into possibilities and trying to learn as much as possible. One thing that has us worried is that taking steroids weakens your immune system. I know what you're thinking, perfect timing, right? Right smack dab in the middle of flu, whooping cough, rsv, pneumonia and every other nasty bug season. Please don't be offended if you don't see him much in the next little while, and please help us out by keeping your children away from him. Sorry, I know that's sad, but it's one more thing we don't want him to have to deal with.

Anyway, more doctor visits coming soon, and lots of prayers ongoing. 

Thanks to everyone for your concerns and prayers.

Meds Time Frame

We finally heard back from the Neurologist, who told us that they are trying these Anti-Seizure Meds to see if they make the seizures go away. They should work within 10-14 days and we should notice a significant decrease in seizures by that time. If not, then his seizures can't be controlled by medication.

We've learned that the two nerve clusters in his frontal lobe area of the brain can be the cause of seizures, and that those type of seizures don't respond to medication very well-or not at all in many cases.

Which is kind of a catch-22. If the meds don't work, then we know that he doesn't have a syndrome that causes seizures and he won't have to be on anti-seizure meds the rest of his life. But it also means he has a condition that causes seizures, and that he can't take any meds to control it.  (that made more sense in my mind than when I typed it out).

Anyway, still waiting on results from tests and loving the return of his smiles.

"Sign of Relief"

     Great news! Our little guy has begun smiling and reacting again to us! Still not as much as our other kids, but he's just about back to where he was before. It's amazing how brighter the house feels when an infant smiles.

     The "seizures" are still happening, about 20/day that we notice,  . . . .  but he's happy. That makes us happy.

When a Smile brings a Tear

Who would have guessed that a simple, real smile could bring tears. We've missed our little guy's smiles. For some reason we haven't been able to get a real smile out of him for almost a week. No real sadness either. He's just always there, in a semi content state. Our daughter showed us a picture on her camera of our little guy with a big smile, taken  a few months ago, and it reminded us how much his smile used to lift our hearts, and how much we miss it.

But tonight, after eating some baby cereal, he looked right at mom and gave a beautiful smile that nearly brought tears to my eyes. I pray that they keep coming.

2 Days of ASM (anti-seizure-medication)

So, after two days of anti-seizure medication, the seizures have dropped down to a few a day (that we've noticed, they're easy to miss). So it would appear that the medication is working . . . but we've heard from people that the medication doesn't make you feel very good. Some say it gives the "gloom and doom" sensation. We've noticed a decrease in smiles--he's never really reacted too  much to faces and efforts to make him smile, but it's gotten worse with this medication (or maybe he's just holding a grudge against us for making him endure another catheter episode).

So, my question is this: Do you, or anyone you know take seizure medication, and if so, does it have bad side-effects like making you not feel well. We can't really ask our 6 month old how it makes him feel, so we need your help. And in truth, since the seizures aren't bad ones, and don't effect his brain (doctors say) and he can still breath since they're so short, would it be better to have the seizures than a medicated 'doom and gloom' feeling?

On another note, more tests are being run. Today we took him up to Primary Children's Hospital again to have some blood drawn. I think they're sending this one to Maryland to be tested.

Again, thanks for all the prayers and concern. We love you all. We feel so blessed to have such great family and friends, and to have our little Easton in our family.

Seizures?

       Been a while since we've posted. Probably because, #1 Things have kind of settled down with the issues our little guy is facing, and #2 it feels weird to post about a kid who doesn't have Trisomy 18, on a blog about parents of a trisomy baby. (note to self, change the blog title).
       But the newest excitement in our adventures with our little guy comes in the form of what we are calling 'seizures' (still haven't been verified that they are truly seizures). He'll be looking around, minding his own business, when suddenly a misfire in his brain forces him to roll his eyes (not the teenage eye-rolling, mind you) up into his head and drop his head. It only lasts a second, then he pops his head back up, looking confused (as confused as a 6 month old baby can, anyway).
       They started about a week ago, with one or two a day. They've increased until yesterday he had 4 in the morning, 10 in the afternoon and another dozen in the evening. We first just thought his neck was fatigued from holding up his big head (all our kids have big heads, poor kids). But then he started doing it when laying on his back as well.
       So we took him to the Primary Children's Hospital, and they did an EEG test. No conclusive results were found concerning seizures, but his brain waves were abnormal. So they decided to keep him the night and do an MRI in the morning.
       The MRI showed less myelination development (those myelin sheaths that cover the nerves) than he should have for this age. Also there were two nerve clusters in the frontal lobe area (they usually spread out more). They think the clusters might be causing the 'seizures', but don't know. A few more tests were ordered, and we're waiting the results for those and will be taking him back Monday to get one more done.
       In the mean time, he's home and they've got him on an anti-seizure medication to see if that stops them.
All in all, he's healthy and happy, we'd just like to know what disorder (if any) he might have, so we can help him more.
       I feel bad for those for whom this sort of thing is dropped on. We've known since part-way through the pregnancy that things weren't completely right, and have had time to come to grips with it. We're just so thankful he's healthy. We love him more every day and know that Heavenly Father is watching out for our little guy.
       Thanks to everyone for the 'well-wishes' and prayers. We love you all.