My husband, Dan and I have 2 sons. Ben is 6 years old. Luke was born March 17, 2010. Luke has a rare genetic condition MPPH (Megalencephaly Polymicrogyria Polydactyly Hydrocephalus) Syndrome and epilepsy. This blog is to help keep friends and family updated and also to hopefully find other parents/families who have experience with polymicrogyria and MPPH.
So it's been awhile since I posted - consider that great!! I've had several people ask how Luke is doing so I thought I'd update.After the seizure, he had a couple weeks that were kind of scary. On many levels...scary because we were just waiting, first of all. And scary because Luke kind of backtracked developmentally. He was walking short distances independently before the seizure and for about two weeks after, he lost it. I thought maybe I was just over analyzing but our PT agreed that his balance was definitely affected. But now! Oh, boy! The kid's a wonderful, glorious NUT! He is EVERYWHERE!!! AND it all really started at the end of 16 months - well within the normal developmental range!! He's doing this thing where he walks with his hands in his mouth. We're trying to break him of that habit but having no luck so far. He is also getting ALL of his molars at once so that doesn't help. But we are still working on it.
As far as we can tell he has had no more seizures. I know that his diagnosis hasn't changed and he can have another one any day but everyday that passes without one is sweet. It's been tough leaving him with anyone else. We purchased a video monitor that helps ease my mind at night. I'm a fairly light sleeper so I hear him moving pretty often and can just look over and see what he's doing. I went in and talked with his teacher and the director of his daycare before he went back. They were really great and I'm comfortable with their knowledge of seizures and their plan if one happens. I also was in contact with someone from the Epilepsy Foundation at my neurologist's suggestion. They made a few preventative recommendations that we've been trying to do such as keeping his diet low in sugars, not getting overheated and making sure he's getting enough sleep. It will be even scarier now when he gets sick because fevers can trigger a seizure although I don't think he's ever run a fever yet. (KNOCK ON WOOD).
He is still happy, happy, happy. Even more so now that he can really get around. We had him evaluated for speech/language therapy this summer. The therapist said she had several concerns but he wasn't really at the bottom of the barrel so he probably wouldn't qualify for services at this point. She was considering giving him a therapist once a month to continue working on decreasing the drooling and loss of thin liquids(since the evaluation his swallowing has really improved, we're not concerned about thin liquids anymore. The drooling is an entirely different story...)
However, since then I have seen him around other kids approximately his age and have gotten feedback from others and I'm afraid we are starting to see a rather significant language delay. Now, if I wasn't looking for this would I think anything of his language delay? Probably not. He's a boy and he's working really hard on his gross motor stuff. Both factors tend to slow down language development. Ben was a little slower in the language department, too. BUT since we know Luke is predisposed to language problems - I'm ready to do battle to get him services to head off any problems in the future. I used to think he had some words but realized he doesn't really say them with meaning. He does use 2 signs and can point to a few body parts. So that is all good. He's also making lots of noises and repeating a lot of sounds - which is also good. I think I was seeing things I wanted to see for awhile because I so desperately want everything to be OK. It is OK, though, even if he is delayed with it. As long as we know and get it taken care of!
Our Parents as Teacher's educator is doing an 18 month screening on him in September. We also have our 18 month pediatrician appointment and neurologist appointment. These were all carefully planned BEFORE our First Steps reevaluation. The speech therapist who evaluated him will be present as well as our therapists and coordinator. I'm busy reading up on language development (thanks, Sue!!) and what's within the normal range. I truly believe the reason Luke is doing sooooo well is because of all of the early intervention. If speech/language is going to be a problem - I want to start taking care of it. Now.
And...Luke and Ben! Delightful! Totally normal, crazy brothers. One of their favorite activities is to take turns screaming - yes, screaming. It's pretty funny. Another one of their favorite activities is head butting each other. See? Totally normal:)
I'll update you in September after all of our meetings!! Much love!