Saturday, November 7, 2009

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,!

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+!


Sarah said...

Thanks for writing all of this Erin. It is good you've gotten some answers and I hope you can get more. Ryan has awesome parents and I know you'll do everything to help him build his strength up. We'll keep you in our prayers as you continue to research and have doctors visits and learn. Hugs, Sarah

Sara @ Domestically Challenged said...

I made it. I need some peanut butter now though. Wow, what a confusing time for you all. Bottom line: Ryan is perfectly formed to be who he is
Gods Son
Your son
Sam's sister

Mary @ Giving Up On Perfect said...

Erin, I am amazed that you have wrapped YOUR brain around all this so quickly! You are so smart and such a good mom. And it sounds like no matter what it's called, Ryan is a little (no, BIG!) miracle to being doing so well!!! Yay, God! I will keep praying for you all - for answers, for peace, for healing.

Heather said...

Well, I'll take that A+! Leave it to our little Ryan to baffle the doctors and give another opportunity to show God's power. Yes, Ryry, you are AMAZING! I love you and miss you TONS!!!!

Love, Auntie Rah

Ace said...

Wow, that's a lot of info! Glad to know you are so well informed and he will continue to develop normally!

Belcheryl said...

Way to go Erin! I have been where you are & knowledge is power! Thank God that we live now---can you imagine what life could be like for our little ones even 50 yrs ago?! You are right he is exactly the way God designed him to be & there are reasons why He is allowing this to happen to Ryan & your family. Evangeline has some abnormal formations on the right side of her cortex as well... I know it is different & yet the feelings are the same...I keep trusting in the fact that God loves her so much more than I do & He is in control....Thanks for the update. So do they think that all of his seizure activity is partial? Since Eva didn't have any seizures on her EEG we don't know about her....I can't decide which I'd rather her to have....None would be choice, but I don't think that is going to happen....I am here if you need to talk---

grandma said...

Ryan, I am praising God for you, my grandson, because you are "fearfully and wonderfully made; God, your works are wonderful; my soul knows that very well. God skillfully and lovingly made you in the secret places and has recorded every day of your life before you were ever born." Ps. 139 May your life always be a testimony of God's greatness. Love you lots, Grandma

Nicole said...

You're an awesome mom Erin and you are right, God makes no mistakes! He has a purpose for Ryan's life and it's such a great thing that you have the comfort of knowing that!

Stephanie said...

Wow. That is a lot of info! We will continue to pray for the little guy. We miss you all!

Elsie said...

I'm giving the A+ back to you for your research as well as your bravery (as opposed to wishful thinking) in going after truth. You and Ben -- in doing your utmost for both Ryan and Samantha -- glorify our loving God who knew all of you long before these complications. I'm praying for Ryan and all of you, with love and blessings, Leatha

A day in the Life... said...

That is a lot to process. Good for you for trying to sort through it all yourself and for following up with the doctor! So many parents just leave things to the doctors and don't follow up on their own.

You are in my prayers.

Ashley @ {Let Go, Laughing} said...

wow there are a lot of big words in this post but i am so glad you guys are getting some answers. i can't even begin to imagine what you are going through and how hard and confusing this much be but you seem to be handling it all really well. you are awesome and amazing and just a truly fabulous mom!

Jess(ica) said...

Sorry to hear the diagnosis, but glad to hear that he's not having a lot of the problems that he could be having! =)

Freddae' said...

Keeping you and your family in our prayers.