ECI Visit and The Pediatric Opthamologist

Last week was a busy week for Conley. Long story short, Dr. Nail suggested two things at Conley’s 15-month checkup. The first was a consultation with Early Childhood Intervention (ECI) for his developmental delays (not saying enough words, wouldn’t walk by himself). The second was a visit to a pediatric ophthalmologist as part of the screening strategy for the Neurofibromatosis (NF) in order to check for things called Lisch nodules that can appear in the irises of the eye.

So the ECI consultation was on Wednesday of last week and there were different therapists present to observe different developmental areas. Based on their observations, Conley is delayed in three areas (and this is with a 3-month delay in their scale, since all children develop at their own pace). In these three areas, he as at a 12 month level and he is 16 months old now. So, we have decided to enroll him in the program , which means therapists will come out to the house to work with him in these areas and teach us how to work with him. The scary thing is that NF can cause developmental delays, so you don’t really know if he is delayed because that’s just his pace, or if it’s potentially caused by NF.
The visit to the ophthalmologist was not too fun, since they had to dilate Conley’s eyes. In order to do this, Jon had to restrain Conley while the nurse pried open his eyelids in order to put the dilating drops in. I think it traumatized him a little because now when I lean him back in the bathtub to rinse his hair he starts getting upset, which he never did before. Ultimately, we received good news. Nothing appears in his eyes at this point, but the doctor made a point of telling us that if he were in our position, he would probably get an MRI done. Just because he can’t see anything in the eye, doesn’t mean that there isn’t anything going on behind the scenes. He seemed pretty knowledgeable about NF; apparently he has treated patients with NF before.

Since NF is caused by a mutated gene, Jon looked on our insurance plan and found an pediatric geneticist at Cook’s Childrens in Denton. We plan to make an appointment to discuss our options and see if it’s possible to have him tested for this particular gene mutation. It would just be so much better to know, if possible, than to play out this waiting game with the screening strategy, since some indicators won’t show up until they are 7-8 years old and some even into puberty. That way, if he does have it, at least we can prepare ourselves and know what to watch for.

BUT, good news - Conley did start walking all by himself over the weekend and he is EVERYWHERE! There's no stopping him now! And he is starting to say more words...so we're moving in the right direction.