Microcephaly

Here is a photo that can maybe help answer some questions I've gotten about microcephaly.  Microcephaly literally means "small head".  It is actually fairly common (2-3% of the population could be considered microcephalic).  For someone who is very small, it would be expected for the head to also be very small.  Isaiah is small, however because his head is also small for his body it has become concerning.  Isaiah is the size of an average 14 month old, but his head is the size of an average 8 month old.  So, if Isaiah was 14 months old (so his size would meet his age), he would still be considered to have microcephaly with his current head circumference measurements.  If, at 21 months of age, Isaiah was the size of a 14 month old, and his head was also the size of a 14 month old, that would be far less concerning, since his head would be porportionate to his length.

If you google microcephaly you will get all sorts of photos of individuals with varying degrees of micro which I think is confusing for people.  Isaiah's is certainly not as severe as some children's and for the most part we don't even really notice the difference when looking at him until he is next to children of the same size (length) as him.

I've had several people ask what this diagnoses means for Isaiah, and the answer is simply 'we don't know'.  He will likely always be very petite.  If you calculate his likely adult size based on his current length he would be about 5ft as an adult, give or take a few inches, but those predictions can be very inaccurate.  He may have a harder time in school, or he may catch up and show no differences in learning.  We just don't know.  What we do know is that Isaiah is getting every resource we can provide him him with in order to reach his full potential, and he has an incredible support team of family, friends, and therapists with absolutely no lack of love and affection.

Evaluation Update

Isaiah had his 4 month evaluation at the CDD today.  Here's the quick update (I'm exhausted so I won't go into much detail...feel free to call or email with questions, or if you want to hear the more detailed version)

Gross motor Isaiah is still at a 10-12 month level.  So unfortunately there was no real improvement since he was evaluated at a 10-12 4 months ago.  She noticed improvements, but since his progress is so much slower than a typical child, it still puts him in that same age range.  Bummer.

Speech he's around a 12 month level.  He was at a 8-10 month level, so that's pretty good progress.  Pretty much the speech gap isn't closing, but it isn't getting any wider so that's good.

The best news of the day was that in fine motor he scored at a 16-20 month level, which puts him close to his actual age (21.5 months).  That gap is shrinking!

Isaiah was Dx with microcephaly at his last evaluation, and unfortunately his head growth is still a concern.  They also diagnosed him with 3 other forms of cephaly (I can't remember which ones without going to check on his discharge report).  One had to do with head shape, and the other had to do with the measurement from the front to the back of the head.  At this point it's time to do brain scans.  Not happy news for me, as he will have to be put under general anesthesia, but the good news is that we've already met our insurance deductible, so it should be fully covered.

His nutritionalist was happy with his weight.  He's 21 pounds, and 30.5 inches.  He's small.  He's in the 0.1 percentile for his height, but his height to weight ration is great, so he's getting enough nutrition.

So that's it.  He should be scheduled to go in for his scans in the next 2 weeks.

UPDATE:  I forgot to mention in the initial post that she also mentioned that Isaiah's reflexes are brisk. I'm not really sure what that means for Isaiah, but it can be caused by some neurological things.

UPDATE #2:  These are the additional cephaly dx and a description.

     *BRACHYCEPHALY occurs when the coronal suture fuses prematurely, causing a shortened front-to-back diameter of the skull. The coronal suture is the fibrous joint that unites the frontal bone with the two parietal bones of the skull. The parietal bones form the top and sides of the skull.

     *Positional Brachycephaly 

     * PLAGIOCEPHALY results from the premature unilateral fusion (joining of one side) of the coronal or lambdoid sutures. The lambdoid suture unites the occipital bone with the parietal bones of the skull. Plagiocephaly is a condition characterized by an asymmetrical distortion (flattening of one side) of the skull. It is a common finding at birth and may be the result of brain malformation, a restrictive intrauterine environment, or torticollis (a spasm or tightening of neck muscles)