without a definite route

everything you ever wanted to know about emmit’s brain (but were afraid to ask)

on March 25, 2009

this is the second post about The Scary events of emmit having a seizure in january and us learning that he has a brain malformation. the first part is here.

we finally got a chance to sit down with dr. wilson, a developmental pediatrician at riley children’s hospital, to talk about emmit’s hydrocephalus and dandy walker malformation (DWM) and what the heck it means. all in all, we’re feeling pretty good and hopeful about emmit’s developmental potential. dr. wilson spent about an hour and an half with us and patiently answered our 2-month’s worth of questions. he also showed us the MRI images. emmit’s ears look supercute sticking out in the x-ray pictures of his noggin. imagine dumbo ears sticking out of a skeleton head. maybe that’s something only a mama would find cute?

i took notes during our appointment and tried to organize them to make sense, but what makes sense to me might not make sense to anyone else. or even be right, for that matter. there was a lot of medical-talk and emmit was climbing everything in sight and handling expensive medical equipment.

the most important thing that i learned and that i am compelled to communicate is this: emmit’s life expectancy is normal. there is no correlation of a shortened life span to hydrocephalus or DWM. as i mentioned yesterday, the one time i googled, i was punched in the gut by “sudden unexpected death” and it was the first question i had for the doctor.

alright, please bear with me. this is a lot of information. there are four separate issues that, of course, all tie together, but they each have their own luggage. the issues are: seizures, hydrocephalus, DWM and developmental delays.

seizureswhich are a temporary alteration in brain function due to abnormal electrical activity (okay…maybe a little googling, but just for basic definitions) – are the most immediate issue to get a handle on. every seizure-prone person triggers for a different reason. fever (febrile) is the most common with children. in the ER, the docs asked if emmit had a fever recently. the looks on their faces when we said no scared me. how to control your “uh oh” face should be taught in med school. hard normal play, like jumping on a trampoline, is not a seizure trigger. the really icky thing? sometimes a brain just short circuits. isn’t that comforting? emmit is now on anti-seizure meds, which he takes twice a day. we’ll wait a certain amount of time (months? years?) that he is seizure free then try him off the meds. it’s all about the waiting. we also need to keep an eye on him for absence seizures, which basically look like spacing out, but you can’t get his attention. there is a chance that this seizure was the only one he was ever going to have.

now, ready for me to throw down my minimal brain knowledge? dandy walker malformation (DWM) concerns the formation of the cerebellum. the cerebellum is the communications center of the brain. emmit’s is under-formed, but he has one. some people with with severe DWM have none, I guess. the question will be what this means long term for his cognitive function, complex reasoning and motor skills, expecially coordination. there is also something about the connection to the 4th ventricle that, frankly, i don’t understand.

people with hydrocephalus have abnormal accumulation of cerebrospinal fluid in the ventricles, or cavities, of the brain. that can cause pressure inside the head. emmit is a big kid from a family of big-headed people. so there’s no way to tell, at this point, if his head size is communicating the hydrocephalus or if it’s just a family trait. josh’s head is 60cm, which officially counts as bigger than average (or abnormally large, as i’ve reinterpreted). emmit’s head, at 53 1/2cm is also above average (my head size is merely average, which some might find unbelievable). sometimes to relieve the extra pressure in the brain, a shunt is inserted. dr. turner, the pediatric neurosurgeon who saw emmit in the hospital two months ago feels that no shunt is needed at this time. we just need to watch for symptoms that the pressure has increased. symptoms like vomiting, headache, increasing developmental delay. but for now, no brain surgery – yay!

dr. wilson couldn’t make any promises or guesses about how severe emmit’s developmental delays will be. he suggested getting an IQ test done when emmit is older. he said there is hope becuase of the good prognostic indicators he observed in his office while emmit played and communicated with us, and from our anecdotal information. we need to work hard in the next few years on verbal communication. we want to make sure to give him every opportunity to learn.

what’s next?

  1. we have an appointment in early april with dr. pappas, a pediatric neurologist. we’ll ask him the same things we asked dr. wilson, focusing on the hydrocephalus and DWM.
  2. we are going to find a summer program for emmit since he responds so well to routine and school.
  3. we are increasing his bi-weekly speech therapy to once a week.
  4. emmit needs to go on a kinda-diet. at 42.5″, he is as tall as an average 5-year old and at 50lbs, he weighs as much as an average 7-year old. although he’s not fat, his bmi is high for his age – 99th precentile high. the extra weight could have a negative impact on his physical delays and low muscle tone. because he already eats quite healthfully – blueberries, yogurt, raisins, grapes, cottage cheese, crackers, cheese, tofu, brown rice – this mean fewer snacks and smaller portions. no more goat cheese and brie.  “i heavy” was one of the first full sentences he ever said. i heavy indeed, poor kid. we’re also going to try to just get outside and move as much as we can. that’s hard to do for one adult with emmit and jasper in tow, but there’s gotta be a way.

and some other interesting stuff

  1. emmit has always been a crappy sleeper so we asked if any of these new-to-us things could be contributors. dr. wilson said that he might have a heightened anxiety level due to his delays. there might be emotional/psychological reasons behind his sleep disruptions rather than physical reasons. could be bad dreams that he isn’t able to communicate just yet. we’re going to start keeping a sleep log (fun!) that includes what happens during the day before he has disruptions. perhaps change in routine sets it off. we’ll look for patterns and maybe follow up with a sleep study in the future.
  2. emmit’s esotropia (the crossy eyes) were not caused by or a symptom of the hydrocephalus or DWM.
  3. emmit’s cognitive age seems to be around 2-2 1/2 which means that time out is okay for discipline and that we should not be too worried about potty training, he’ll do it when he’s ready. until then, we hope pampers comes out with a bigger diaper size than the sevens he has nearly outgrown.

thanks to everyone for all the love and kindness that has come our way. it is amazing to know that we’re not alone as we go through this new adventure and that there is a small army of people who love our boy.


9 responses to “everything you ever wanted to know about emmit’s brain (but were afraid to ask)

  1. Lulu says:

    Thanks so much for sharing, Jaq. I’m not the slightest bit religious – or even spiritual – yet I can’t help thinking that knowing what’s going on helps the Emmit loving army focus our collective good energy to a positive end. We’re all sending happy thoughts and our hearts your way.

  2. anne says:

    know that we love your boy, your girl, and you and josh.

  3. Nana says:

    Reading (and knowing) the thoroughness, care, and love the you have put into learning about what’s going on with Emmit, developing strategies for coping — no, optimizing — the situation fills me with admiration and gratitude that you and Josh are Emmit’s mom and dad! I really appreciate that you both have tackled a difficult, frightening set of events and circumstances — The Scary — with guts and commitment and optimism and love. Hang in there and while you’re taking such good care of Emmit and Jasper, be sure you’re also taking care of each other :>)

  4. Ilon says:

    Thanks Jaq,

    Ever since Josh’s email announcing the seizures a couple months back, Anne and I have been anxious to hear more. I have followed Josh’s request and kept off the internet..so the info helps and is truly quite a relief. It’s not like you are busy enough, but these two entries are much appreciated. My best to you, Josh, Jasper, and Emmit.


  5. the stones says:

    We love you all and are thinking about you all the time. Thanks for the update and although we are not prayin’ folk either, we know that the karma of the universe will protect and nurture your sweet little guy. Like someone else also said, remember to take care of yourselves and each other, too.

  6. clint says:

    First off, I am SO proud of you for sharing. Big hugs sent your way. Drop me a line so I can connect you with someone who has been through this with their daughter. It might help with questions, venting, and the paths they have traveled. As always, if you need ANYTHING let me know. Big love and hugs from the zoo.

  7. Debbie says:

    Hi Jaq,

    Thanks for sharing and explaining so beautifully. My thoughts and good vibes are going your way! Sounds like you are on the right track! And the invitation is still there if you want to bring the youngins to our house sometime for a day of rompin and playing….the big heads and all! lol Love, D

  8. migs says:

    Hello Jaq,

    I stumbled on your blog and was touched by your words. I am not a very religious person but for what.s its worth, I will pray for your Emmit. Through your thoughts I can see you are a very good person and you have a wonderful family. Things might look scary, but I know, don’t ask me how, I just know things will work out just fine.

    Best regards,
    migs paulino

  9. […] then it occurred to me that the curls went away around the same time that we learned about the dandy walker and i think just maybe i’ve attached some pretty gigantic baggage to whatever it was those […]

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