Just a quick follow-up from the last post to let you know the EEG results were all normal and age-appropriate. Hooray!
Hoping to start weaning Benjamin off the meds soon – we’ll find out from his doc what next steps are. Of course that just means another overnight EEG is in our future, post-weaning
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.
Ben was so brave during this part – such a tough little guy
Ben is not sure how he feels about his new hat
This is what Ben’s brain looks like
Once upon a time, in June 2011, before Benjamin’s fungal infection made itself fully apparent, we were under the impression that he would be coming home soon. So with that in mind, my amazing family and friends threw me an awesome baby shower. The weird thing about having a baby shower when you have a preemie is that all of the cute little baby things look… huge. To keep this in proper perspective, in June 2011 Ben weighed less than 5.5lbs and was still wearing preemie clothes. So when I opened up clothes that were larger versions of preemie clothes he owned, I cracked up. I’m pretty sure everyone who was there thought I was either crazy or had had one too many cocktails. Thankfully, when Joe came home from the hospital later that evening and we sorted through our gifts, he found the giant versions of preemie clothes as funny- if not funnier- than I did.
Now, a year and a half and 16 pounds later, Benjamin can just fit into those 18 month versions of his preemie clothes. (Ben weighs over 21lbs right now- holy growth spurt batman!)
Growing slowly, but growing all the same.
This photo was taken in May of 2011 and Ben weighed 3.3lbs.
It has been very frustrating, but we are finally getting Benjamin’s seizure meds today. We’re hoping they work and they won’t have to try one of the meds with more side effects. As we said last time, the Vigabatrin (Sabril) has one pretty nasty side effect (possible vision loss) but the other options aren’t much fun. The vigabatrin works for a lot but not all babies with infantile spasm – fingers crossed.
In about a month they will bring Ben back in for an overnight EEG and hopefully see improvements in the waves. I just want to see the spasms stop – they are heart breaking. Especially because they scare him and he gets upset.
In other news, even with our stay this week, as of yesterday Ben has been home longer than he has been in the hospital!
And remember how I said I was going to write post about how much Benjamin likes peas? He also likes chicken and rice and has been really good eating solids. It is amazing, especially since he gives us such a hard time with a bottle most of the time.
This photo is from this morning and while it looks like he is upset – he’s really just biting the spoon with gusto!
So I’m not going to lie – it’s scary stuff. You know it’s not good news when the doctors recommend you don’t google something. After two nights on the EEG, the doctors told us that what Benjamin has is called “Infantile Spasms” (sometimes called “West Syndrome”). It’s a form of epilepsy that is pretty rare and shows up around this age. What it looks like is his head dropping towards his chest and his legs lift at the same time – it only lasts a half a second and then he’s normal for a bit and then he spasms again. This happens 10 to 20 times over the course of a few minutes and then it is over. It sometimes really upsets him too (and us).
It can be caused by a ton of things, but in Benjamin’s case it is likely because of the brain injury from his inter-cranial hemorrhage (in the occipital lobe and the cerebellum). The scary part you read about if you do google it is the long time diagnosis. There is a big connection between infantile spasms and developmental problems, especially low IQ. There is also possibly an increased risk of death (though that might be less of an issue with medical advances).
Some things say if you treat it early the risks for these things are less. And hopefully we caught it early. And since the causes of the spasms are so wide, it’s hard to say what any individual kid’s outcome will be.
And come on – this is Benjamin we’re talking about. He laughs at percentages and scary google results. He is going to be fine.
The doctors are recommending (and we agreed) to treat him with a drug called Sabril that we are hoping will work. The one big side effect of the drug however is the potential to damage vision – so no big worry there. He’ll start taking it soon once it arrives (for some reason it is difficult to get) and hope it will work quickly and completely.
Thanks again for all the support.
Benjamin when he was still hooked up to the EEG
Another quick update to let you know Benjamin is on his way home. I will write a longer post about what the doctors learned and what that means for Ben.
The short version is he’s getting anti-seizure meds that should help and we’re glad we went in sooner rather than later (thanks for the push Grandmas).
Benjamin has been in the hospital since Sunday. He started having little seizures so we brought him into the ER at CHONY. They have him on an EEG and are running tests to try to figure out what is going on.
What we know so far:
- This is likely caused by the brain damage from his inter-cranial bleed last year
- He will likely go home on anti-seizure meds
- Not much else
It is sort of frustrating not really knowing much – I wish I had better info to share with you and our family. Hopefully we’ll know more today.
Besides having 27 electrodes glued to his head, Benjamin is doing fine. As we say he’s a tough kid.
Amy and I are trying to follow by example.
Two more things: 1. This post was supposed to be about how much he liked to eat peas on Sunday morning. 2. Tomorrow Ben would have been home longer than he was in the hospital.