ryan 101

get comfortable and grab a drink—this may take a while! and pay attention because there's a test at the end.

just kidding! maybe...


last friday (oct 30th) i met with dr. h, ryan's neurologist, to go over the results of his MRI and EEG that he's had in the last 2 months. i was SO incredibly glad i recorded the appointment, because with big long medical words and an iranian accent (yes, i decided she is from iran, not india), i wouldn't have remembered one single thing!

i spent the weekend googling. and diagnosing. and writing down questions for dr. h. and after talking with her on the phone yesterday, i finally have some information about ryan.


here's what she said at our appointment:

from the MRI, both sides of ryan's brain are abnormal in different ways. the right side of the brain is abnormally larger than the left side. this is a rare condition called hemimegalencephly which can result in intrackable frequent seizures and also mental retardation.

ryan also has abnormalities on the left side of his brian. he has clefts, or slits in his cerebral cortex (the outermost layer of the cerebrum. you know, the ripply, wormy looking part of the brain.) due to migration defects or abnormal migration.

are you totally confused? yeah, so was i! as a brain develops inside a mother's womb, neurons in the ventricals of the brain migrate to the surface to form the different layers of the brain. and when problems occur with these migrating neurons, you end up with migration defects. (click on the link for some nice light reading. hehe!)

as for his EEG, the results showed slowing on both sides of his brain (meaning the rhythm of the brain waves is slower than would be expected). it also showed sharp waves (which indicate that partial seizures might come from that area) coming from both sides of the brian, but more from the left than the right.

now with ryan, dr. h is quite perplexed. with hemimegalencephaly (the abnormal enlargement on the right side of ryan's brain) it is common that there are abnormalities on the other side of the brain (which in ryan's case, there are) but usually the main symptoms come from the bigger side of the brain (the side with hemimegalencephly).

the confusing part is that ryan's main symptoms (weakness and delays in the right side of his body) are coming from the other side of the brain (the left side with migration defects). dr. h said this is unusual and was puzzling for her because after looking it up in medical literature, she couldn't find a similar report. she said she didn't really know how to explain that.

for what ryan's MRI showed, he is doing exceptionally well as compared to other kids with the same MRI results. he is not having frequent seizures (so far) and his delays are mainly physical (gross motor and fine motor skills) and not mental. as far as a prognosis goes, dr. h said we'll just have to go by what he shows us. most kids with the same diagnosis are not doing well.


soooooooo now that i've told you about the appointment, here's the update since talking with her on the phone yesterday! (hey, i warned you this would take a while!)

first of all, ryan had a seizure on thursday night (yeah, i forgot to give him his meds). it was different than his other seizures have been, but it started with his right hand shaking. this is good to know because it means that the seizure started on the left side of the brain (the side with migration defects).

secondly, in my googling and diagnosing, i came to the conclusion that ryan has schizencephaly on the left side of his brain (the side with migration defects), which is a rare developmental disorder characterized by abnormal slits, or clefts, in the cerebral hemispheres.

Symptoms can vary widely depending on the extent and the size of the cleft. Patients may show developmental delays that can range from mild to severe.... Paralysis of the limbs may be present... Abnormal muscle tone, including decreased tone (hypotonia) and increased tone (spasticity), can be seen. Some patients may have only seizures. Seizures usually present before three years of age.

thank you, answers.com!

when i talked to dr. h, she told me that the left side of his brain is causing more trouble right now. so he may not have hemimegalencephaly (abnormal enlargement) on the right side of his brain. the radiologist diagnosed it as that, and that's what it looks like, but it just doesn't make sense, medically. the neurologist and radiologists have a conference each month so she's going to discuss all of this with them to try and figure out if indeed he has hemimegalencephaly.

she also said that it looks like he has schizencephaly on the left side of his brain. ah hah, i was right! there just may be hope for me becoming a neurologist yet! she also said it could be polymicrogyria, but i won't bore you with the facts of that.

our game plan right now is to see an opthamologist (hemimegalencephly can have some findings in the eyes. this could help diagnose which type of hemimegalencephaly he has). he will also see a rehab doctor (because of his right-sided delays) and a speech therapist (just for an evaluation). we will continue doing therapy once a week (i'll update you on that later!) and continue on the anti-epileptic drugs. and if all goes well we won't have to see dr. h for another six months!

bottom line, God made no mistakes when he formed ryan's little large brain. ryan has a few slight problems, but we are blessed that his health is SO well!


and now for your test: if you made it to the end of this post, A+!