Tuesday, April 24, 2018

Oops I did it again!

No update since OCTOBER!  Yikes!  Apologies...

Since my last update in October, Jenelle has been battling all sorts of things.  Some directly related to seizures, and some not really related to seizures - specifically, regular bowel movements and the lack thereof.  Roll back (or fast forward from last October) to Christmas.

On on the morning of December 22, Jenelle got out of bed, walked down the hall and into our kitchen where she had a drop seizure and fell onto the tile floor on her face, chipping her front tooth.  At least, we think that is what happened - we didn't see it. She had been cranky and very constipated the night before, so when we found her crying, at first we thought it was that - once I tried to change her diaper, I realized her mouth was bleeding and tooth chipped, so we took off for the ER.

CHOC ER was quite busy that day, and we waited a long time to be seen.  Initially they took an X-ray almost immediately, but once they realized it wasn't as bad as it looked, we waited like everyone else.  Finally, when we got back to see the doctor, they said the X-ray confirmed the chipped tooth was "cosmetic" and nothing requiring dental intervention... also, the X-ray showed that Jenelle was very, very constipated.  So, while we were there, they gave her two enemas producing a poop, and we left with a very sad, pooped out little girl.

The next few days (during Christmas) Jenelle was cranky.  Assuming it was pain from the fall, we kept giving her Tylenol.  Finally, the day after Christmas, her hysterical crying was so unusual, we decided to take her back to the ER assuming the X-ray missed something with the broken tooth.  After more waiting, more tests and X-rays, we learned that her tooth was fine, but she was impacted with poop throughout her large intestine. We were then admitted for a "clean out".  Two nights later, Jenelle came home happy as can be with a smile showing a chipped tooth.  Other than that... Christmas was pretty great.  Here are some photos:

Mom, Jenelle (who was miserable) and Dad at the
Foothill HS vs. Tustin HS rival basketball game on 12/21

In the ER on 12/22 after the fall - :(

Curran Family Tradition - breakfast at
the mall on Christmas Eve

New Christmas Pajamas!

More miserable Jenelle at Christmas dinner.

Doctor's orders!

Happy girl with a chipped tooth!
Family Christmas Card - 2017

The new year was nice and calm for Jenelle.  We recently had a follow up with her neurologist Dr. Tran, and she was very happy to see Jenelle so alert.  Unfortunately, Jenelle is still having many "drop" tonic seizures - anywhere from 3 to 15 or more a day. Dr. Tran increased the frequency of the Aspire VNS (Vagus Nerve Stimulator) and said that while the seizures haven't improved, she was very happy to see Jenelle so alert instead of looking so drugged.  I admit, I had to agree - since her VNS was implanted, we've been able to take Jenelle off of two seizure drugs - Onfi and Ethosuxamide.  I'll take less drugs for Jenelle any day!

Dr. Tran and I discussed the possibility of Jenelle participating in a drug trial hopefully starting this summer.  If CHOC proceeds with the trial, there are certain medications Jenelle cannot be taking while on it, one of which is Banzel.  We started to wean Banzel and so far, she is doing well with a slight increase in seizures when we lower the dose.  We are taking it slow, and the VNS is working better with more frequency.  We see Dr. Tran again in May when we are completely done with Banzel.  That will leave Jenelle with only 1 seizure medication (in addition to the VNS treatment) - Felbamate.  We'll know more about the trial at our next visit.

I'll post more photos from after new years to present later... just wanted to catch everyone up on our girl.  As always, thank you for the prayers and positive thoughts!  I'll keep you posted (when I can!)


Kelly von Hemert said...

The most wonderful parents to the sweetest girl.

Kelly von Hemert said...

The most wonderful parents to the sweetest girl!