Sea’s Story

A bit of a different post today…today is Sea’s story. His journey is where we began to delve into the world of special needs, and where we started meeting some truly wonderful doctors and specialists. This is an abridged version, as Sea is almost 9.

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As parents, we become familiar with those milestones that our children are supposed to reach – babbling, self feeding, rolling over, sitting up, crawling, talking, walking. When they’re not met, we begin to wonder why and, quite frankly, to get nervous.

Sea was pretty verbal, smiled a lot, laughed, and cried – what kid who at the time had major GERD, was intolerant to soy and dairy, wouldn’t? We had to keep him propped on his side and on an incline when he slept for the first few months. Baby spit up, excema, gas were all part of the fun. Outside of that, everything seemed like it was going well until we reached that crawling milestone.

Sea was a bit floppy in general and had some difficulties sitting up straight on his own, but no alarms were sounded until he tried to crawl. He could get himself up on his hands and knees, but couldn’t hold himself there – his knees would instantly splay out to the side, making him resemble a kid trying to do “frog” in a yoga class. Except, this wasn’t yoga class, this was crawling. No surprise, walking was also delayed.

His pediatrician recommended an evaluation by Early Intervention. A team of specialists came out to the apartment (Sea was around 8 or 9 mo old at the time) to play with and evaluate Sea. They discovered that  he met the qualifications for physical therapy (PT) and occupational therapy (OT). The PT would come out to the apartment once or twice per week and work with Sea. I had my “homework” to do with him as well. In addition, Sea qualified for group services. So, once per week he would get together would a bunch of other EI kids, play, and work on fine and gross motor skills.

Time passed, and in conjunction with another life change – my husband and I divorcing – we moved and transfered to the Northshore EI. Sea was reevaluated and given additional services (PT, OT, SL) and group. He now had a couple of different therapists working with him on building up his muscle tone and coordination.

Around this time, I noticed that Sea had a strong dislike towards certain textures. He despised getting anything on his hands, especially if it was sticky or slimy. This sensory issue has since progressed to his needing all of the tags cut out of his clothes, having to feel the inside of his shirts to make sure they are soft, and only willing to wear track pants, maybe chinos, but absolutely, positively NEVER EVER jeans. Sea will wear filthy clothes before he’ll put on a pair of clothes that “bothers” him. A brushing program was integrated into his course of treatment to desensitize his skin…it worked for a while.

In the meantime, Sea’s pediatrician referred him to a neurologist at Children’s Hospital Boston (“the good” – a post forthcoming). For intents and purposes I’ll call him DR for this post. DR was very thorough examining Sea, and made it very clear that he absolutely needed to be receiving services and would continue to need services for a while. DR, after following Sea for a bit, had mentioned that the low muscle tone (congenital hypotonia) could have a few different etiologies, or if we were lucky, would have one of those unexplained causes of hypotonia. What were we looking at? A few different forms of Muscular Dystrophy, and a few other conditions that, if he had them (and I don’t remember what they are. I think I may have blocked them from my memory), would show up between the ages of 7 and 9.

DR referred Sea to a neuromuscular specialist at Children’s Hospital Boston. After meeting with him (we’ll call him DK) a few times, DK recommended Sea have an electromyogram (EMG) to make sure his muscles were receiving signals properly, and based on those results a muscle biopsy. Fortunately, the EMG was normal. And, DK did not feel it necessary to follow through with the muscle biopsy. Phew!

DR has been seeing Seamus since he was 2 or 3…he’s been there to answer any questions, has been pointedly honest and open about any disorders he is thinking about, and is a willing and key part of Sea’s team whom I can email at any time with any questions.

Continuing on….Sea has had a history of migraine headaches, at 8. At their worst, he would have a couple per week – the kind of migraine where you get sick to your stomach and sleep for hours when your head stops pounding long enough for you to sleep. On top of that, Sea was having staring spells. He would sit at the table, stare at something, and be someplace else. DR, given Sea’s history, ordered an electroencephalogram (EEG), to check on his brain activity and rule out any seizures. Fortunately, that all came back normal as well.

Sea’s been followed up with genetic testing (all normal), physiatrist, sleep study and evaluated by a developmental-behavioral pediatrician, to 1. rule out any ASD, 2. to determine the cause of the low muscle tone. He recently had a PT evaluation at Children’s Hospital Boston…he still has low tone and will need to remain physically active in order to keep up with his peers, but more concerning where the activities that required cross-body movements: jumping jacks, running man type of lunges (same hand, same foot, opposite hand and foot, shoe tying, alternating feet while walking down stairs, etc). Validation that someone sees the challenges that I see.

Then again, when your 8 year old repeats the most basic beginning swim (beginner and advanced) lesson level 5 times and still isn’t bumped up to the next level, it makes you question why. I talked to the swim director, of course. And wouldn’t you know, strength and coordination were the two reasons. I knew it wasn’t a question of whether or not he liked the water – Sea loves water and will happily splash in the bath tub or the surf at the beach for hours.

The PT mentioned a disorder that she believes Sea fits the criteria for, that he could get services for. So, we wait to see DR or for his follow up with DK in Sept.

A lot has changed…this smiling face hasn’t changed much…

From the days of sensory and motor integration…

To learning how to balance…

…Or be silly… 

To wear something on his face…

and combine words with movement…

…To work on controlling that tongue when overstimulated or challenged (we’re still working with this)…  

…To want to have his hair cut…

…To just enjoy every bit of life despite the challenges we’re faced with…
…To catch as many frogs, toads, and snakes as he can

…Ride his scooter (yay!! New accomplishment this year!), and keep throwing that ball like a kid a few years older than him and better than his mom (after all, I am a girl!)…

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