Infantile Spasm Update

A little over a year ago, Benjamin was diagnosed with Infantile Spasms, a form of “catastrophic childhood epilepsy.” That sounds scary because it is. Not that the seizures themselves are what you would think of when you think seizures – they are small jerks. Like a big hiccup, where the baby jerks forward, arms go up – or even just like an exaggerated shrug. But if left untreated infantile spasms can cause a child to regress, stop developing completely and have “devastating effects.” (You can find videos online that families have shared so you know what they look like. If you think your child is having these spasms, go to the emergency room right now.)

Ben was treated (what we hope was) very quickly after developing symptoms and saw results from the medicine, Sabril (vigabatrin), right away and has been spasm-free for a year while on the medicine.

Well, just this month Ben has finally 100% weaned off the medicine completely and is doing great so far! In fact Ben is totally med-free. I don’t think there has been a full straight week where that has been true since he was born.

Now, I don’t want to jinx anything (you can take the baby out of the NICU, but you can’t get the superstitions out of the Dad) by celebrating too early because it might not always be that way. It is not uncommon that once a kid grows out of infantile spasms, they develop other kinds of epilepsy. But we’ll quietly celebrate this small victory in this small corner over here – don’t tell anyone.

In other news, we are heading up to Boston this weekend to go to the Early Connections conference at Perkins. It’s a one-day event for parents of blind and visually impaired children (birth to 7) to get together, learn stuff and network. We’ll tell you all about it when we are back.

And now as your reward for reading all of that – here is a cute photo of Ben wearing a tie.

bro ben

If Ben has a dirty baseball cap he would look like a Hobart bro

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Benjamin’s Brain

So the other day I gave you an update on Ben’s vision, and today I’ll give you an update on Ben’s brain. It’s no coincidence since we are in the hospital today for a scheduled overnight EEG to check in on Ben’s seizure activity and make sure the meds are still working.

To summarize where we are at this point:

Ben was discovered to have some pretty sizable intercrainial hemorrhages when he was still in the NICU (in April 2011). They were in his optical lobe and his cerebellum. At the time is was a wait and see sort of thing. When they found the bleeds they were already old, and hadn’t seemed to affect him yet. The doctors told us that he would likely be affected by the bleed, but brains are funny and it would be hard to predict what would happen. His prognosis was not great for potential motor skills and intellectual abilities, he was at a very high risk for cerebral palsy and seizures. We wouldn’t know the extent of his disabilities (if any) until we started seeing him miss lots of milestones. (This one of the reasons I get so nervous about his delays.)

In March of last year, Ben started having these small seizures, known as Infantile Spasms– a form of epilepsy that children under two develop, sometimes because of brain injury (like his bleeds). If these seizures are not treated very very quickly, it can be very bad for a baby’s brain. Every spasm is doing damage and the baby stops developing. It’s scary. Luckily the medication Ben is on – Vigabatrin (Sabril) has worked wonderfully for him. One side effect of this treatment is potential damage to vision, but that’s not a big deal for Ben. So far since the drugs kicked in we have not seen another spasm and his last EEG was clear –  but that was back in May.

So we are in the hospital today and overnight until tomorrow to check his brain to make sure everything is still normal so we can start to wean him off the Vigabatrin.

It’s no fun getting an EEG though – they glue 25 electrodes to Ben’s head and wrap the whole thing up so he won’t mess with it and then he’s connected to a computer and watched on video over night. Hopefully in the morning they will have everything they need so they can send us home.

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Ben was so brave during this part – such a tough little guy

Ben's EEG Hat

Ben is not sure how he feels about his new hat

What Ben's brain looks like

This is what Ben’s brain looks like

Drive-by update

Ben and I returned home from the hospital this afternoon with good news. The medicine that he’s on is doing it’s job- his EEG looks “phenomenal” and his doctors are all very happy. We’re going to have a follow up appointment with his neurologist next week where we’ll learn more. We’re going to discuss weaning this medicine and what our next steps might be.  Thanks for all the good thoughts!

Dapper Baby

This memorial day weekend we whisked up to picturesque Connecticut to see our friends Brianna and Geoff get married. We also had the wonderful opportunity to catch up with some old college friends- and some of their new additions!

The bride and groom held a pre-wedding barbecue where Benjamin got his first (successful) opportunity to try out the swings. He had so much fun that he would forget to hold on!

Benjamin got all dressed up for the wedding, including a bow tie (courtesy of Maria K!) which subsequently got eaten up. His parents looked pretty nice too, if I do say so myself. He then got to go on his first train ride- the Essex Steam Train- where he got lots of snuggles from Uncle Seth. During the reception Ben had fun dancing with his mom, and ate well too! He only got a nibble of the official dinner- some of the mashed potatoes- but gobbled up his bottles, and some puffs too!

We’re now in the hospital again- planned this time- getting a follow up EEG which will let us know how well the Sabril is working to control Ben’s seizures. Please keep your fingers crossed for us!

Take me out to the Beep Baseball game…

Yesterday Amy and I took Benjamin into Central Park to watch a Beep Baseball game. Beep Baseball is a modified version of traditional baseball played by visually impaired and blind athletes. The baseball itself beeps, so the player can hear it and when a batter hits the ball he or she must run to a “base” which is one of two padded posts (randomly chosen) 100 feet out from home base. The base buzzes and the player has to reach it before the fielders find the ball (still beeping) and hold it up. (You can also read a great article the 2009 Beep World Series here)

The teams playing yesterday were the Long Island Bombers against a team from the radio station WFAN. The Bombers team are “a dedicated group of baseball enthusiasts from the Long Island and Tri-state area. They just happen to be blind and visually impaired.” While they play their regular season games against other visually impaired teams, most games are against teams, like WFAN, who have sighted players, using blindfolds.

LI Bombers at bat

Imagine hitting a ball based only on sound

The Bombers played a great game and showed some real athleticism, beating WFAN 9-1. Maybe one day Ben will play on a beep baseball team. Even if he doesn’t we are glad to know there are teams like the Bombers educating people about blindness and overcoming obstacles.

LI Bombers

LI Bombers pose after beating WFAN 9-1

Best of all it was a beautiful day to be in the park. Ben enjoyed the grass and got in a nice long nap during the game (takes after his dad who has napped through his share of televised Mets games).

dad and ben at the game

The boys enjoying the game

In other news, Benjamin will go back to the hospital at the end of the month for a follow-up EEG to see if the anti-seizure medicine is working. He will stay a couple of nights there. But as far as we can tell, the vigabatrin is really helping with his infantile spasms. We haven’t seen one in over a month. Fingers crossed his EEG comes back normal too.

Ben went to OBX and all he got was this lousy cold


So while last week was a lot of fun with all kids- there is one things kids do better than anyone else: spread germs. By the end of the week every little boy in the house, including Benjamin, were snot monsters. Boogers flowing freely like… well… gross viscous rivers. Ever see Ghostbusters 2? Like that.

For those keeping score this is Benjamin’s first cold. To make it this long it has taken gallons of purell (not to mention a few months of living in a plexiglas box).

So far it hasn’t been so bad – he’s pretty stuffy and a little bit cranky, but no fever and only a little coughing. The doctor didn’t even want to see him. This is quite a change of pace from when he used to get put on 3 antibiotics and have a full blood work up if someone said “cold” near him back when he was in the hospital.

That said, we hope the cold goes away soon. Being sick is no fun (and he’s been sleeping  poorly through all this).

As promised other updates:

Ben’s spasms have really been improved by the vigabatrin. Only a few days after he started taking it the spasms are virtually gone. The only lingering weirdness is at night. We have caught him a few times with spasm-like movements in his sleep. Nothing like he used to have, but it is still not great. Anyhow – we’re hoping that goes away or maybe following his next EEG they adjust the dosing and make him 100% spasm-free.

As for eating – can you believe the boy who would only eat if you were sitting in his glider, with the lights off, the sound machine on and if he were 85-90% asleep, had his best feeding week ever while we were in OBX? Incredible! He even finished full bottles in rest stops! All this eating had him gain a half a pound so – making him now over 15 and a half pounds! Where does that put him on the chart? Well – not quite on it yet. Maybe if he keeps eating we can get him up to 1%.

And lastly – he is completely sitting up on his own now. You lay him down on the ground, turn round, and there he is sitting up! How did he do that?

Benjamin Sitting