Since having the tube placed and we started her daily boluses of 1 full can of Pediasure 1.5 cal with Fiber four times daily with a 40 mL flush of water. We still had the constant chewing, smacking her lips and dry heaving which sometimes lead to her actually vomiting. Kerstin started to vomit so much, I took her to her pediatrician's office to make sure she didn't have a virus or cold. That weekend she was put on Pedialyte for the entire weekend. We were in constant contact with her doctors and nutritionist at Children's about these issues either via calls or emails and even videos. These concerns prompted her neurologist to order that she have an hour long EEG done to see if she was having seizures. This meant another trip of 124 miles one way to get the test done. This trip has been made 7 times in the past 2 1/2 months, with orthopedic appointments and surgery, casts changing, then cast removal, to neuro appointments and eventually another hospital stay and another surgery.
Got the EEG and the tech told me that she did the chewing/smacking routine during the test. A few days later, results showed that she was NOT having seizures during the study. Thankful for that, but what is going on, causing her to do this? Nutritionist decided and consulted with her doctor and nurse about a formula change. Her Pedisure was changed to Pediasure Peptide 1.5 cal, same feeding schedule. Still not working sadly. Now, nutritionist suggests that her feeding changes altogether! Really? How so?
Kerstin will need to have smaller boluses through the day, 10:30 am: 120 mL of Pediasure Peptide along with 40 mL water; the same at 1:30 pm, 4:30 pm and 7:30 pm; she will also get an overnight feed using a Kangaroo Joey feeding pump, to run 10 hours overnight, that would start at 9 pm in order for her to be off the pump around 7 am to get ready for school. The first night of use, my princess looked frightened at the sight of the pole and pump. We had to explain to her that she would not be stuck, and that it was not an IV. Told her that she would have her Pediasure going "down down into her tummy tummy.." ( our little sing song, while she's receiving her boluses ).
The new schedule did not work very long, the second night/morning, Kerstin started to vomit while the feed was still going. I'm so thankful that we have been blessed to have great people in our lives and a sister who is also a nurse. She told me to check with them again because with her having a bolus at 7:30 pm and going on her pump at 9 was possibly too much on/in her stomach. The 7:30 bolus was dropped and things have been going more smoothly. Granted, she is still doing the chewing/smacking, not as often. It is my prayer that these instances will cease altogether.
We finally got a schedule to wean completely off of the Topamax. I guess her neurologist wanted to see the results of the EEG before deciding to stop that seizure medicine.
More to come...