Wednesday, May 20, 2009

Bennett's Story Part 2: The Calm Before

It was suggested to me recently that I try to organize as much of Bennett's story as I can, try to put the last 3 months into some kind of perspective. I am going to post this here now and add to it as there is time. I will link up on the side of the blog main page so that people can access it who want to and I will get it finished as quickly as I can for anyone needing or wanting to see the chronology of Bennett's condition.

Bennett's Story Part 1: Ahead of His Time

Bennett's Story Part 2: The Calm Before

Bennett's Story Part 3: Shit? Meet the Fan

Bennett's Story Part 4: The Truth is IN There

Bennett's Story Part 5: Acthar the Terrible

Bennett's Story Part 6: Road to Nowhere?


From the time we got Bennett out of the NICU and home from the hospital until a few months ago, we were golden. From December 2007 through February 2009 his development was just what we sort of expected and hoped that it would be. We knew he was technically around a month ‘behind’, so we have always factored that in, but he caught up for the most part and grew quickly. He was meeting all the milestones that his pediatrician expected, was in the percentiles he was supposed to be in and was doing what infants do.

He was learning to crawl, then walk, learning to pick up food and feed himself, lift himself up, laugh, smile, and anything else you expect from a child while they grow. No real injuries that we can recall, couple of falls but nothing major that required anything more than observing him since he wasn’t seriously hurt.

Heck, Carter had taken more than his fair share of spills and fell down a VERY long flight of stairs once and fell out of the bed a few times with no issues at all.

There is one very important thing to note however…over the winter and into the holidays, I had made some comments to Jen regarding my opinion that something with Bennett seemed a little…off. Nothing major, just some observations of some behavior that I couldn’t quite walking in a circle, not maintaining eye contact with me much, a lack of interest in TV or toys, and the fact that he seemed to be learning sounds or words more slowly than Carter did.

I didn’t take it THAT seriously; neither did Jen, as some kids do develop at different speeds and have different personalities and interests. Hell I have known of kids who didn’t utter a word at all until they were OVER TWO YEARS OLD. But it did come up in a few conversations, so it is worth making a note of.

But don’t misunderstand that part…Bennett WAS saying words, he was understanding things like his name and responding to it. He was saying ‘No-No’, ‘Baba’ and stuff. He could say words like ‘Dadda’ and ‘Mamma’ though we were not entirely sure if he knew that those were our designations, but hell, he repeated them.

Hell, look at all the photos I am peppering in throughout this writing...he totally was engaged with me while taking them or with whomever he was interacting with in the candid photo, he was responsive, smiling, laughing...super cute, super adorable and he was smart. He would attempt to repeat some things you said, you could see him trying to figure it all out in his head as you presented him with something new. And even though he was less engaged in toys as Carter was, he still played with them.

He just played with them a little differently. And he absolutely engaged with his older brother as much as his easily-annoyed-by-littler-kids older brother would allow.

He was, in pretty much every way imaginable, a happy and joyful well-developing boy.

On February 11, 2009 Bennett had an appointment with his pediatrician for his DTaP immunizations, which he received with very little fuss. He always had shown a massively high pain tolerance, uncanny really. Up to that point he had received every immunization to date that most kids get, with no complications or issues other than a fever, at the appropriate ages they were scheduled to get them.

The following evening, on Thursday, February 12, 2009, Jennifer went to the church for aerobics. I stayed home to watch Carter and Bennett. Bennett was running a slight fever from the DTaP shots he got the day before, but nothing super serious, and I was playing with him on the floor while Carter watched TV.

Everything was exactly how it usually was. I was on the floor, Bennett was doing his thing, and Carter was doing his, and we all just played and laughed and sat together doing what Dads do with their young sons.

Out of the corner of my eye, I noticed a very odd behavior from Bennett, a subtle thing really, a sort of herky-jerky motion in his head and arms, very slight, what I called a ‘body hiccup’. Then he stopped. He walked around a little, made some sounds, then did it again. Then walked around. Then again. The entire experience didn't last very long, and I managed to shoot a little video of it since I always kept the camera at the ready on our charging island. I didn't get a lot on the disc, just a couple of the 'hiccups'.

I explained it to Jennifer when she came home but he wasn’t doing it anymore and had not been doing it for long. In fact at the time I even said that it looked like he had the 'shivers' because of his fever. She saw it a few days later, and it was puzzling to her too, because as quickly as it started up he stopped. Then nothing for a few more days, but then we both started seeing it happening more frequently, and we were both becoming baffled. And concerned. But not worried. Not yet.


Because the damnedest thing is that we were looking shit up on the net like ‘body hiccups’, ‘body stutters’, 'child shivers' and other stuff and didn’t find anything that even once frightened us. Never once when we were describing it to friends or family did we use the word ‘spasm’. And I certainly don't categorize a 15-month old child as an 'infant', so the word 'infantile' was missing from any searching I had conducted.

Hell, even the very first time I even mentioned it in a blog, the VERY first one ever about Bennett and what was to come, I mention in a roundabout way that maybe he was having a seizure or something LIKE that but I had only the DAY before even connected the dots to think to USE the word seizure.

And still, when I wrote that first entry, I had no fucking clue at all what Infantile Spasms actually were.

We would learn very, very soon.


  1. Same deal with us.....I soon became sure it was seizure related, but being that my daughter was over age two, I didn't give a second look to Infantile Spasms. In fact, the first two neurologists we saw didn't consider IS until they saw her third EEG.

    Bennett sure is adorable. Maddie was the same way.....loved to ham it up for the camera.... was always smiling. Now I am lucky if I can get her to look straight into the camera, and to get her to smile for it is close to impossible. She does still smile all the time, just doesn't want to pose for me anymore.

  2. You were ahead of never even occurred to me to even search on the internet. I had a feeling they were seizures, but never, not once did I search online. I guess I was in my own little world...clueless.

    I loved the photos. He's precious. And you can certainly tell he was VERY engaged. It's astounding the difference in their little personalities once these seizures and meds really start kicking in. It's really tough to sift through photos and compare the before and afters...for us anyway. I remember Christmas portraits last year...not one single smile for the camera. The ones before seizures he smiled in almost all of them.

  3. Wow. My son also began having spasms right after his DTaP. I think there were other factors at some underlying genetic pre-disposition, but I do think the vaccine triggered whatever that is. (KC is 2.5 now and we are still doing genetic workups to try to find a cause).


  4. If you go to the CDC's website and search "Contraindications to Vaccine Chart" you will find this under DTaP...

    Progressive neurologic disorder, including infantile spasms, uncontrolled epilepsy, progressive encephalopathy; defer DTaP until neurologic status clarified and stabilized.

    So not that I think DTaP causes it but it could quite possibly trigger something.

    By the way...I LOVE all the pics. Bennett is so incredibly adorable!

  5. Liz:
    Heck, even Carter is tough to pose, I think that just comes with 'camera awareness'...something all humans get, we just all get it at different ages, but all people become different when filmed/photographed once they know what it does.

    Any looking backward is tough, if there was a 'before'. I guess in some ways we have to consider ourselves lucky...some of the parents we know have never SEEN a smile from their child.

    There is probably SOME correlation, I hope that someone, somewhere, investigates that.

    You have cute ones too...but thanks. Yeah, I read that about DTaP too...scary.

  6. Bennett is such a cutie,
    I did the same thing when my son started having his spasms.
    But my sons head came down in clusters, so thats what I googled, "head bobs" Infantile spasms came up straight away, i remember sitting there watching this you tube video and it was as if I was watching my own son on the screen. I ran out of the room and vomitted. Its been 13 months now and still nothing helps.
    I admire you for being able to put it into words like you have done. I look forward to reading the rest of Bennetts story

  7. Welcome Leah. I need to update and revise and add to this story overall. It has been a while since I have done it in a concise format. And I need to tweak the 'Start Here' page.

    Oh how Life gets in the way. But even though circumstances are such as they are, I'm glad you found some solace and comfort here.


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