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Tuesday, May 27, 2014

A few extra minutes

Today, we had a little bit of time between dropping S off at school and an appointment.  Most of the time, we just wait in the car if we don't have very long because it can take so long to get the Littles out of their carseats and then back in again :p  It was a beautiful morning, though, so we braved it and got a little walk down to the pier and back :)

They love these floating piers :)  Some of them are very "bouncy" but, alas, this one was not.  The walkway out was bouncy but the pier itself was anchored pretty well.  Another park we frequent has a pier that is really bouncy so we need to make our way out there soon!


I believe this was Izzy's first time to walk on one of the piers.  Last year, she was usually in her stroller when we went by one and our normal parks hadn't had theirs out yet when we've been there. When she's excited, she dances :D



He was excited when he realized he could see across the lake to the other side.  Most of the time, we park over there and walk one of the other trails but I specifically went for the piers today because its a short walk and they haven't been out on any piers this year :)


We made it back to our car, got buckled in, and drove to our appointment with just minutes to spare :)  Perfect timing!

After we got B on the bus, Izzy decided it was rest time:

Tuesday, May 20, 2014

Oh, the changes a week can bring :)

It has been one week since our neurology appointment where the doc put her on meds for epilepsy. At the time, he said he couldn't say it was seizures 100% because her EEG didn't catch an episode. But based on the abnormal activity caught on the EEG and her symptoms, he was pretty sure she was seizing. He said if we start the meds and her symptoms begin to disappear, we'll know for sure it was seizures. The difference in Izzy is amazing. She no longer randomly falls--when she does fall, its because she tripped and those little hands come out to catch herself and she no longer injures her face/head. She doesn't have "blank" moments. She doesn't walk into walls or door frames or furniture. She sleeps better. She talks more and more clearly. Her comprehension levels have gone up. Her mood has improved--overall she is happier, more coordinated, and more vocal.

Thursday, May 15, 2014

More diagnoses......

Izzy had another neurology appointment the other day and we were there a very long time :\  There were many things to talk about.

We got the full results of the MRI.  It showed two cysts in her brain.  The Rathke's Cleft Cyst near the pituitary gland I was told about over the phone and another cyst on her pineal gland.  The pineal cyst needs to be watched because if it grows, they will need to remove it since it would prevent fluid from draining out of the brain if it grows.  It can also affect sleep so that may possibly be while she isn't the best sleeper.  She rarely sleeps through the night. 

Her neurologist was able to pull up the results of her endocrine panel and everything looks good so the Rathke's is not affecting her pituitary gland function.  yay!  We also talked about the myelin sheaths--they are not as developed as they should be but it is possible that, given time, they will catch up.  In one year we need to repeat the MRI to check the cysts and the myelination.  At that time, they will also need to get a contrast MRI of her pituitary gland. 

The MRI also showed a structural abnormality.  I forget what it is called but the part of the brain that connects the two hemispheres is too short.  Dr. W said that this is often seen in patients with genetic conditions so he's hoping genetics will find something because a diagnosis will guide him in how to continue treating her.

Her 24 hour EEG isn't completely processed but he was able to look through parts of it and get a treatment plan going.  One of the reasons we did the original short EEG and MRI was Izzy's falling.  She has your normal toddler falls where she trips over things but she also will fall for no apparent reason.  Sometimes she will be walking and just fall over or she will be standing or sitting still and fall.  When this happens, she also does not put her hands out to stop the fall so she hits her head and face a lot.  She also randomly walks into things (walls, doorframes, furniture).  While her eyesight is borderline for needing glasses for her age, she can see well enough to not walk into walls, you know?  And sometimes its like she "pauses" after a fall or walking into something--she will just be still and staring for ten to thirty seconds before reacting. Her EEG shows that a small portion of her brain misfires. A lot.  More than your "average" person with epilepsy.  While we did not catch one of her episodes on the EEG, her unusual brain activity coupled with the falling, the pausing, not putting her hands out for those falls, etc tells him that she is having focal seizures.  The abnormal brain activity she is having in that part of her brain is known for causing seizures so he believes that the falls where she does not try to catch herself and "pauses" are a seizure.  And he thinks when she walks into something she should be able to see, she is seizing--he said in some focal seizures, just one part of the brain shuts down so while she continues walking, the part of the brain that would stop her from walking into a wall has stopped.  So she walks into the wall and doesn't react to that until her brain "wakes up".  So we started a low dose of an anti-seizure med used for epilepsy.  We will up the dose after a week and then give it some time to see if it works or if we need to up the dose again.  She will be on it for two years and then they will check to see if we can wean her off or if she needs to stay on it. 

Poor kid just can't catch a break :( 

Friday, May 9, 2014

So far, so good

She's handled her 24 hour EEG fairly well so far :). We've watched Frozen and played IPad games!


Saturday, May 3, 2014

Too chilly for fun!

Yesterday I took S on a field trip at school--we went to our local fairgrounds for Agriculture Day.  It was pretty cool for third graders--they saw demonstrations on tractors, planting, various animals, etc.  However, it was mostly outdoors and it was cloudy and fifty degrees with wind.  Wind chill put us at about forty-five degrees.  Not too bad for your average kid but S has never done well with cold unless he is extremely bundled up.  After an hour he was asking to go home and by hour two I was getting ready to take him to the bathroom so he could stand under the hand dryer :\  Before we went to do that, though, his teacher came up and asked if I wanted to take him home early because she could see his lips were turning blue.  So we went to Tim Hortons for hot chocolate and blasted the heat in the van for about half an hour until he was warm enough to feel comfortable :p

S and Iz are my kids that struggle with the cold.  I wonder if its related to their CHDs?  S's is closed and Iz's big ones are repaired or closed on their own but I still wonder if the struggle with the cold is connected.