Jenelle's Journey: Back to School with Lots to Update! Our new 8th Grader!

Monday, September 12, 2016

Back to School with Lots to Update! Our new 8th Grader!

This summer for me was emotional and odd. However, with the slow change in seasons as we move into Fall (or just slightly lower temperatures in Southern California) the new routine for back to school is a welcome one for me.

Where to begin with Jenelle? Well, so far, we are seeing lots of exciting and wonderful changes in Jenelle's seizures since implanting the VNS. We've been meeting with Dr. Tran every 4 to 6 weeks, and we've begun to wean some medications and think we may now be at therapeutic levels with the VNS. Or, as Dr. Tran calls it, the "sweet spot!" Before she had the VNS, Jenelle's complex partial seizures were daily, and averaged around 1 to 3 minutes in duration. Sometimes 10 - 20 seizures a day. We now see seizures that last 10 to 20 seconds in duration, and the most in a day around 10. Oh, and we are getting rest days with no seizures - I think she has a "bad" day every third day where she has small clusters but is mostly unaffected. Definite improvement!

Also, we've begun the slow process of weaning and lowering the dosage of Jenelle's many medications. This effort has helped with Jenelle's GI issues as well. If you recall, a year ago we had to put Jenelle back on formula after she had lost 25 pounds in a 5 month time frame. Jenelle started Ensure Plus, and slowly gained back her weight. Unfortunately, constipation led to loss of appetite, and of course with the weight loss, she was over drugged. Special needs kids are so very sensitive - one small thing happens and the domino effect takes over. Weight loss led to over-dose in drugs, led to feeding issues, led to constipation and nausea... hopefully we are just getting out of the vicious cycle.

The constipation issues were getting, well, too much. Poor Jenelle had little to no appetite, and drooled excessively. We tried clean outs (a drug called "Golytely" and pronounced Go Lightly, which is the exact opposite of what actually happens after taking it!) We tried Miralax twice a day. Prune Juice daily, and yet, Jenelle was still constipated. Finally, in August, Dr. Idries switched Jenelle to a different formula called Pediatric Compleat. This formula is food based instead of dairy based, and within a week of switching, Jenelle's BMs were finally regular. We are now seeing our happy little girl who likes to jump, and who is once again slightly interested in real food. 20% of her daily intake is actually from real foods, and she gets 5 cans of formula, sometimes mixed with fruits and other foods that help promote digestion.

So Jenelle started back to school on August 29 and has the same teacher she has had for the last two years. She is in 8th grade, and will transition to high school next fall. We will start touring the different schools soon, and the "big transition IEP" is scheduled for next year.

So things are good with Jenelle and improving - which is always a nice direction to move to! Here are some photos from Spring and Summer. As always, thank you for continued prayers - I'll continue to keep you posted!