Face of hope

Face of hope
Courtesy: TIffany Kay Photography

Wednesday, September 18, 2013

Neurology Follow Up

Today Meagan had her follow up with Dr. F.  It was a pretty routine visit but we did get some 'better' information about some of the things that Meagan deals with.  First of course we talked about Meagan's development.  No real surprises there - Dr. F was extremely happy with her.  He said there is no point, in his eyes, measuring where "Meagan is" compared to other 2 year old children. He said although she was still working on sitting (which she was also working on a year ago summer), he wasn't concerned.  He said we haven't seen any regression and that is really what would concern him.  Dr. F said Meagan is Meagan and she will do what she does in her own time.  I was fine with that statement!

Baby girl doing so good opening her eyes more now!

On to her seizures - Meagan has had seizures almost all of her (almost) 2 years of life, so they are nothing new to us.  Luckily, we have found a medication and dosage that seems to 98% control her seizure activity.  When she is very tired, or hot, or post surgery, I do see a few crop up, but, for the most part, her seizure activity seems very low.  This is a huge improvement from last year where she would have several as a daily occurrence.  He did up her dose a tiny bit only because she had a few breakthrough seizures this last week - but it shouldn't be that much of a difference to negatively effect her.. and I'm sure those few were due to her recent surgery or her brain trying to make new connections for her eyes.  She has been fine this week so far, so hopefully this new dose keeps those breakthroughs at bay.  He did say he was able to tell from her last few EEGs and an analysis of her behaviors that it seems her epileptic activity is mostly in her temporal lobe and possibly some frontal lobe.  It made total sense to me because Meagan's behaviors during a seizure are very textbook "temporal lobe" when I read about it. It described almost exactly what she does during an episode.   He said the temporal lobe showed several epileptic discharges and also severe slowing of the brain waves.  That coupled with noted slowing and discharges in the frontal lobe area offers some clue as to the origination of her seizure activity.  This doesn't change anything we are currently doing to manage her seizures - it was just another piece of the puzzle that was made a bit clearer at this time.  We have been blessed so far (knock on wood) to never have a seizure where she can't breathe or gets into emergency distress, so for now, we do not need a rescue med at home.  Last year Meagan had a few episodes of Todd's Paralysis, but, otherwise we are very lucky that her breathing and vital functions have not been affected by any of her seizures.

The last order of business for the appointment was taking a look at Meagan's general health.  We know from bloodwork done in the NICU that Meagan's microarray was normal - ie: no blaring genetic abnormality that seems to have caused her Hydro.  Dr. F noticed that Meagan didn't have any recent bloodwork done, that is, while she is healthy.  She has plenty of blood draws over the last 6 months, but all were when she was really sick or pre-surgery.  He was looking through things and discussing Meagan's weight gain - which has mostly been good since her g-tube- but she was down a pound prompting  Dr. F to ask if I had ever had Meagan's Thyroid numbers re-checked.  I said "re-checked?"  He said yes - last year she had two separate blood draws where her thyroid numbers were way off.  I told him no one had ever told me that.  Could have been useful information especially with all her growth and weight issues! He agreed and wants us to go in one week to get a "healthy" blood draw so he can re-look at those numbers.  If they are still wacky, he wants her to see an endocrinologist just to manage how it is or could affect her growth down the road.  It's not a complete surprise, however, since we did note on her last MRI that her pituitary gland looked damaged or crowded... so we will see what the bloodwork shows in a few weeks and go from there.  The two blood draws had been from two separate times - one at the hospital,and one at the old Neurology practice where we used to go - and neither place had ever contacted us with the abnormal results.  I was very glad Dr. F was thorough and decided to recheck her numbers - the results could be very useful in our monitoring of Meagan's growth in the next few years.

As for anything else, she is pretty stable right now.  She does have a random spot in the middle of her head puffing up a little this week - it's not as squishy as her forehead bulge last month, but not as hard as bone. So I'm confused if this is just weird bone growth, skull shifting, or fluid pushing out from between bones.  She is still acting like herself, especially for being less than a week post-op, and is still tolerating feeds fine. Meagan other than having a new lump and bump on her ever so lumpy and bumpy head, doesn't seem bothered by it one bit - so I'm just going to watch and see. Dr. F seemed fine with that too.  He did recommend to possibly call Dr. R by week's end if she still had it - but - I know Meagan. And I know when something really bothers her - and I also know that the kid has been through the ringer lately with doctors, appointments, surgeries, and therapies.  Being that she is fine in every other way, we are just going to watch it and see if it changes any more or goes down.  If I feel at all it is something bothersome or worrisome, or if her behavior changes,then of course Dr. R will be the first person I call.  I swear - always keeping us on our toes with her puffs and bumps and growth! This girl.....

Meagan's "puff" ... I've come to the conclusion she just likes to puff out 
random parts of her head every so many weeks 

So all in all we left the follow up today with a little new information, a reaffirmation of a lot of old information (thanks to my super Hydro mom gurus), and a good feeling about the appointment.  Meagan did give Dr. F "five" when she first came in before she buried herself in my shoulder for the remainder of the appointment, so that's an improvement (she normally screams as soon as we go through the door and doesn't stop).  We don't have to go back until December when he wants to see her again and compare her blood work with how she is doing and how her weight is trending. It was great to leave an appointment in good spirits.  Meagan seemed happy to leave too - after hiding in my shoulder almost the whole time, she let out a resounding "BYE BYE!" as we walked out of the office. I don't blame ya Megs - I don't blame ya! :)

This picture is from a few weeks ago, but I just love it. She's such a silly girl.

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