Clark’s first appointment was at 12:45 so we were hoping the boys would sleep in a little bit this morning. Clark woke up at 6 for a bottle and it ended up being an early morning anyways.
His first appointment today was to record his family medical history in preparation for the genetics appointment we have tomorrow. That was pretty straight forward and we had a bit of time until his neurology appointment so we found a quiet sitting area and the boys played while Nic and I zoned out.
The second appointment was with the neurologist. She asked a number of detailed questions regarding a wide range of things, including family history, details on his eating struggles, where he is in regards to gross motor skills, and so on. She did a simple examination as well, to check his reflexes and strength.
After his examination she told us that she didn’t think it would be necessary to do anything more than blood work at this point, so no MRI or anything. She said that he seemed to be quite bright and interactive, and as she put it “very cute” with similar physical features to both me and Nic. Because of the normalcy of his physical appearance and apparent mental aptitude she didn’t think it would be necessary to do any genetic testing. She is actually a geneticist as well so we were happy to take that recommendation from her.
However, she was concerned about his eating. I was relieved that she understood that he seems to have an issue with swallowing since the occupational therapist that we saw yesterday seemed to think that he was just being stubborn and refusing textures he didn’t like. She suggested that he might have something similar to Oro Motor Apraxia. Typically they see it in elderly stroke patients, but it is usually related to speech not eating, although it can affect eating as well. Basically, with apraxia, the brain does not understand how to “plan” doing certain tasks. In Clarks case it seems to be eating. He has figured out how to suck, which is why he will take food well from the squeeze pack. But eating off a spoon is more difficult for him to figure out, and evidently he doesn’t know what to do at all with solid food.
She said she believes that his fussiness was related to simply being hungry. Often kids that have something like this are hungry but just are not able to eat enough. She said his hypotonia (low muscle tone) seems to be doing alright and she feels he will continue getting stronger as he gets older and especially if he gets more food. He has been getting significantly stronger in the last couple of weeks, which has been approximately the amount of time he has been eating with regularity in regards to his pureed food. So if we can continue to improve on his eating she believes we will see significant improvement in his gross motor skills and strength.
They are hoping to have us see a speech therapist before we leave to see if they can assist us with some exercises to help him figure out how to eat, if we don’t see one here we will need to connect with one where we live. We are supposed to come back when he is 15 months old. By that point the neurologist believes he should be caught up based on where he is now, but if he has not caught up and continues to struggle than she will order an MRI.
I feel very hopeful about this idea of Oro Motor Apraxia. We knew that Clark was hungry, we also knew that he wanted to eat but seemed frustrated by his attempts at eating. We have also often wondered if he would be stronger if he was getting adequate nutrition. I firmly believe his eating issue to be in his mouth because he seems to gag before he can even get the food down his throat. Clark seems to be cognitively fairly normal, and simply developmentally delayed by his low muscle tone. Of course, we are hopeful that he does not have a syndrome or some sort of chromosomal issue so something like this seems much more manageable to us.
They did draw blood today but it only took one prick and it was over really quickly. Clark was really tired and cranky by this point so we were happy to be done after that.
We still have his stomach X-ray tomorrow, as well as our final meeting with the pediatric GI specialist. We were supposed to see the geneticist as well but I believe that has been canceled. We should get most of his blood tests back tomorrow and unless something comes up on one of those we should be done until his return visit at 15 months to assess progress he has made.