Tuesday, November 1, 2016

Epilepsy Awareness Month

Did I ever tell you that the neuro at TCH who initially gave us Bowen's diagnosis was the most rude and negative person ever? That she would never meet her milestones? Or be what we hoped she would be? I pretty much hate him. And I also love proving him wrong.

I don't say I can fully blame him though. Looking at a picture of her MRI you would see a few things. You would see that the right side of her brain is bigger than her left. You would see that her frontal lobe is abnormal. You would see that her parietal lobe is abnormal. You would see that she has too many folds on her right side. You would see that her corpus callosum is just not right. Sound scary? It is. You know what else is scary? Epilepsy. And the fact that we can't tell a seizure from a normal behavior. The fact that we don't know if the medicine is working or not. The fact that being hooked up to a fancy machine can't even give doctors answers. The fact that surgery will never be a black or white answer. 

But a few facts we do know is how much Bowen IS doing.
She currently says bubble, purple, turtle, mama, dada, more, this, ball, snack, night night, all done, open, help, and I LOVE THAT I COULD KEEP TYPING MORE WORDS. She is also pulling up, cruising, gets mad when I tell her no, bites her sister (then realizes she did something wrong and gives her a kiss), gives her baby medicine, pushes shopping carts, goes to school, loves school, and loves making friends.

We take nothing for granted and know that with HME things can change in an instant. So taking the advice of a dear friend and mentor of mine, we are soaking in and relishing in these moments and focusing on what she CAN do.

If you feel like reading more, here is more information on HME & epilepsy <3


Saturday, July 30, 2016

Sweet Bowen Lee

"Never in a million years'' were the words that the neurologist used when he met with us yesterday to give us the results from Bowen's MRI. As most of you know she had an MRI Saturday and we so appreciate all the texts we have received checking on us. Sorry we have not written back yet as we were still processing everything. Long story short, the neurologist has diagnosed our sweet Bowen with ''Hemimegalencephaly" (I still can't pronounce it either so let's just say HME for short). Now try to stay off is the rundown:

  • It is a rare (really really rare) neurological condition/brain disorder. Her neurologist has been practicing for 30 plus years and has only seen 3 prior cases.
  • One half of the brain (the right hemisphere in Bowen’s case) is abnormally large (i.e. developmentally different).
  • This was NOT something anyone did (believe me I asked..did I eat something wrong? Do the wrong things?). She had this before she was born-- it's a chromosomal defect that occurs developmentally in the womb.
  • One of the concerns with HME is that the abnormally large hemisphere of the brain does not allow for the normal hemisphere of the brain to properly grow and develop.
  • Another concern with HME is the side effect of seizures.
  • The primary concern with seizures is if the severity of the seizure cuts off oxygen to the brain.  HME should be the explanation of Bowen’s developmental delays to date.  We have seen steps in the right direction thanks to therapy.  The concern is moving backwards (i.e. learning and developmental impacts) resulting from seizures.  Fevers lower the threshold for seizures stemming from HME.
  • Anti-epileptic drugs do exist, although there are side effects and they do not work all of the time for all HME patients.
  • Brain surgery in the form of a hemispherectomy exists in which the abnormally large hemisphere is disconnected and removed with the hopes that the normal hemisphere compensates for the lack of the other hemisphere (the technical term for this is “plasticity”).

So what's next? Her neurologist has referred her to a seizure specialist as well as a geneticist to sort of connect all the dots and figure out the best plan of action. The hard part is trying to get everyone to answer my phone calls :) 
The fact that Bowen has only had one seizure and doesn't seem like the ''typical'' fit for HME is so encouraging for us and we know if anyone can progress and prove doctors wrong it's her! One really important to thing us is that we cannot allow the label to define her. She is just Bowen. 
We will continue to keep you updated of course and we are always an open book for any questions you have. 
Brett & Ryann