Not Sure of a Title, So Make One Up In Your Own Head

Starting after his birthday, Armand has had a whirlwind of a time — some good, some bad, but it’s been moving quickly.  Lots to say and tell, so let’s get to it.  As always (or at least for this time), these are real nicknames given to Armand.

Senor Pantelones


On Tuesday, March 20th, Armand had his evaluation for pre-school now that he’s 3.  He would be attending a special needs school here in our hometown that does extremely well in catering to the needs of kids, with speech, physical, and occupational therapists on staff and the ability to order whatever fits his needs at the moment (such as a special chair for him to sit in).  The speech and occupational therapists actually worked with him for about an hour while Lindy and I answered questions to the school psychologist about his condition, his therapy, his medications, etc.  He won’t start until May, and even then his time will be limited because of it being so close to the school year.  However, in the fall, they would let him start in a class.  The really nice thing is that the classes are a mix of special needs kids and “normal development” kids, many of whom have siblings with special needs; the normal kids would be more willing to interact with the special needs kids, while also giving them something to emulate.

Cornelius Thunderbottoms

On Wednesday, March 21st, Armand had his 3-year checkup, where he was declared rather healthy.  No infections, good weight gain, no outward concerns (aside from the obvious).  The nice part is that last summer, his weight was way down despite eating well.  Now that he’s been off the cookies and milkshakes and we’ve cut back on the toddler snacks, he’s actually put on some weight.  I think part of that, too, has to do with him losing his ability to walk and crawl and climb everywhere, which I’ll get to shortly.

El Jefe

On Thursday, March 22nd, Armand was fitted for a wheelchair he may need for school.  But this is no ordinary wheelchair my friends, this is a super-awesome-spectacular-21st-century hybrid wheelchair and stroller.  Basically, it looks like an industrial strength stroller (smaller wheels, handlebar for the parents, canopy).  It even folds up like a stroller to fit into cars.  But it’s extremely strong, metallic, even rigid in some places.  With this, he’ll get more support, and we can even take it on trips to Minnesota.

Bun-Sequetor

Now for the not-so-YaY! stuff.  On Tuesday, March 27th, Armand had his first official seizure.  It lasted about 2 minutes, while he was at Lindy’s finishing up breakfast.  He didn’t have severe shaking typically associated with, say, an epileptic seizure — but his eyes were rolling around in his head, his limbs were rigid, and according to Lindy he was there, but not “there”.  He couldn’t look at her, he wasn’t interactive at all.  We’d never seen anything like this, and being the one to see it first-hand, Lindy was extremely shaken, calling me at work in tears.  She got calls into Armand’s neurologist as well as our doctors in Minnesota.  Oddly enough, however, he had a great day the rest of the day (generally quite happy and talkative).  One of our doctors in Minnesota said that seizures don’t always have to be a negative thing, that in children who are struggling, they can act as a “reset button” to help them perform things they haven’t been able to do lately.  Consider a computer that has been running for a while, and the memory is full, and it can’t perform tasks up to speed — reboot that computer and now it runs fine (usually).  That’s what a seizure can do.  However, in Armand’s case, I’m not 100% sure of that.

Bunkle

(also, Bunkleberry Finn, Bunkie Bear, and Charles Bunklin)

That Friday, March 30th, Armand had an EEG to check his little melon.  He did as well as can be expected as far as having electrodes stuck to his head and being held down while it happened.  He did actually fall asleep during the procedure, tho.  He looked so adorable in his little headwrap and swaddle — I’ll have pictures up as soon as I get them from Lindy.  The EEG showed no seizure activity.

However, that weekend, Armand had a couple of, as we call them, “episodes”.  At first we (well, Lindy — it was her weekend with him) thought they were mini-seizures, as they only lasted 15-20 seconds and did not involve him being “out of it” or having his eyes go wild.  His neurologist was able to get us in to review the EEG results this past Tuesday (April 3rd) and get a look at his condition.  He said that what Lindy described during the first “episode” sounded like a seizure, but the subsequent “episodes” were actually dystonia, a sub-cortical movement disorder that causes the muscles to involuntarily contract all at once, mostly in the limbs.  To get an idea, a smaller, more focal version of this is writer’s cramp — now imagine that in both your arms and legs and hands and feet, and even your back and jaw.  It’s extremely painful, and for a 3-year old, extremely frightening.  I saw my first episode just as we left the hospital on our way back, caught in some lovely daytime Cincinnati traffic.

Dr. Collins prescribed Keppra, an anti-seizure medication that should also help with the dystonia.  He’s had a few more “episodes” since then, and there really is nothing we can do for him at the time other than to comfort him as or after it happens.  Not being well-rested can be a trigger for this for him, so we are doing all we can to make sure he gets good naps in.

Pee Pot

(also, Lil’ P and Petey Pop)

It is breaking what little of a heart I have to watch my little man go through such a quick decline.  In the fall he was thriving, able to walk across the room with little help, would play on his own or interact well with those around him.  He was active, vocal, inquisitive, and strong.  He slept well, and seemed to be the little fighter we knew.  Now he’s no longer able to walk without holding both hands (or using his new gait trainer), he’s often not in the best mood, he’s not eating as well as he did (although the miglustat does have appetite suppressant properties), and now he’s on four medications (Ibuprofen, migulstat, n-acetylcysteine [all as part of his AIM therapy for GM1], and Keppra).

I really wish I could do so much more for him besides give him awesome nicknames, but for the first time since his diagnosis, I feel sort of powerless at the moment.

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One Response to Not Sure of a Title, So Make One Up In Your Own Head

  1. Pingback: Blessing in Disguise? (Day 2 In Review) | Armand's Hope

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