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

The whole tooth and nothing but…

It finally happened! A tooth surfaced! In fact, two teeth! Benjamin is very proud of himself. But remember those 7 months in the NICU? The months on TPN? The jaundice? Well that stuff is still following Benjamin around. You can see it in those two little teeth poking out. They are unfortunately discolored from all that stuff. So our little boy will have some brownish baby teeth – but the adult teeth will be normal color. We don’t care- because he finally got teeth! They could be purple for all we care.

Ben is also still sniffly from his cold. Amy took him to the doctor who said his lungs were clear and we should to “wait it out.” This is was a new experience for us- a doctor not recommending the most extreme treatment when something is wrong. “Wait it out?” Maybe Ben is a normal baby now!

Ben loves his momma

Ben loves his momma

In exciting news, Ben won a braille book from one of our favorite baby blogs “Thomas Marshall Does it All” – a wonderful blog about another little boy who is visually impaired and doing amazingly. Thomas and his family are real inspirations to us and we learn a lot from them. Jessica, Thomas’ mother, celebrated the anniversary of her blog with a contest. Thanks, Jessica!

Vigabatrin

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!

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Infantile Spasms

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 on the EEG

Benjamin when he was still hooked up to the EEG

Quick Heads Up

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. 

So long Fluconazole!

Six months! Benjamin has been home for six months – and while he’s still not yet at the “been home longer than in the hospital” milestone, six months does mean something great. At this month’s Infectious Disease check up at CHONY (after making sure his bones look good) they officially took Ben off Fluconazol. He has been on that orally since before he left the hospital (following the 6-week IV course {with a chaser of micafungin}) to make super-duper sure they killed the fungus, killed the fungus’s family, friends, co-workers and pets, burned down the fungus’s house, salted the earth, unfriended the fungus, cut out the fungus from the photos from spring break, etc.

So this means he is not on any major meds any more (a small dose of prevacid is all that’s left). And now we get to test my long-held theory that the fluconazole was affecting Ben’s appetite and taste (supposedly a common side effect) and was the reason he hates eating so much.

Now fluconazole has a long half-life so won’t be out of Benjamin’s system for up to four days – but it’s already been a couple of days and so far there hasn’t been any improvement. I’m still holding out hope that my theory is right and he’ll start eating like a champ again… fingers crossed.

In other news – there is no news. You might be wondering why we haven’t posted in a while – but it’s just because we are sort of in a rut here. And personally I’m finding it a little depressing. Benjamin is still working on that tooth, still working on trying to crawl, still at almost the exact weight for weeks and weeks. Amy has the right attitude and reminds me that Ben is just doing things in his own time – but I’m impatient.

Anyway – here’s a high point from the weekend when Ben briefly like food and fed himself for a little bit. Ain’t he cute?

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