Tuesday, September 08, 2015

Start of School & Health Update!

Well, it seems the new school year has arrived, and Jenelle and her Brother Jack have returned as a new 7th Grader, and High School Freshman!  With the new school year, Jenelle has had some routine follow ups along with some worrisome, and rather surprising news...  Miss Jenelle has lost 21 pounds since her last hospital stay in March!  She left CHOC at 91 pounds (50th Percentile for weight) and on August 31, she weighed in at 71 pounds (7th Percentile) during her follow up with Dr. Idries in Gastroenterology.

I was absolutely stunned that she has lost that much weight.  I suppose because we see her everyday, it's more difficult to see the weight loss, but that evening during bath, I really took notice at her ribs showing under her skin.  Dr. Idries has prescribed Ensure Plus to be added to her meals and will see her again in 3 months.

So, as you can guess, when the body is malnourished... nothing goes well, including seizure control. Luckily, we had a follow up with Dr. Tran two days after Dr. Idries.  Jenelle has been having more cluster seizures than we like to see, but nothing over a minute or more.  She continues to have both Absence, and Complex Partial seizures.  We feel the weight loss could be related to the addition of Zarontin in May, as we immediately noticed a decrease of appetite - however Dr. Tran says that is not a normal side effect for that drug.  She believes that with the 20 pound loss, Jenelle is now being "overdrugged" with seizure meds, which can also lead to more seizures from the body being fatigued.  We both agreed... Jenelle looked very docile and drugged, for lack of better word.

Dr. Tran and I discussed a lot of subtle changes for now to give Jenelle more time to gain weight.  The first change being to lower the Onfi (a sedative drug) to see if Jenelle perks up.  We also may want to lower her Risperdone.  I'll need to check with Jenelle's psychiatrist, Dr. Gudapati for that.  For now, we will keep watch, and Dr. Tran will see her again in December.  Dr. Tran also mentioned the possibility of VNS (Vagus Nerve Stimulator).  This was something that was approved at UCLA shortly after our return to CHOC.  We've been with Dr. Tran for a year now, and now that she knows more about Jenelle, she agrees that the VNS is something to consider.  We won't make a decision on that until December.

So, for now - lots of protein for Jenelle and hopefully we'll put some weight on our girl! Nutrition is key to everything working well!

Oh, and in cleaning out my "piles of stuff" around the house, I found a CD of photos from Give Kids the World with 3 photos we didn't share.  Two photos are of Jenelle's Star in the Castle of Wishes, and one is of our arrival to our cottage. Such fun memories!  Oh, and of course, the traditional first day of school photo!

Please pray for some weight gain for our girl.  That is all for now, I'll keep you posted!

Jenelle's individual star - Daddy wrote her name on it!

Jenelle's star after being "placed" in her constellation.

The Curran Family has arrived in Florida!
1st Day of School 2015-2016!
Jenelle - Grade 7
J.D. - Freshman (Grade 9)