Yes, I realize I promised an update after our appointment last Thursday with Dr. Shields but, this has been one of those crazy weeks where things change by the minute! Well, here goes…
First and most importantly, Jenelle continues to do well seizure wise! She still has some, but her daily amount has reduced significantly. I check Jenelle's urine daily for Ketones, and once a week for other things like blood and/or protein. Last Wednesday night, I checked for "other" things and Jenelle's urine tested positive for blood. This surprised me a little because she was acting fine, so I called UCLA and they determined that we had caught a urinary tract infection in the very early stages. I took Jenelle on Thursday to our Pediatrician to confirm it, and by that point, there was actual blood in her diaper, so we started an antibiotic that Jenelle has previously taken before called Keflex. Considering the infection she was fighting, Jenelle's seizures were increased slightly, but still the daily amount was low.
Thursday afternoon we made our trip to UCLA for our follow up with Dr. Shields. He was very pleased with the subtle changes we are seeing in Jenelle and feels we need to play with the diet a little more to help get her to eat the food. We are going to slowly add more carbs each day until we can keep her ketones at a lower level to see if it makes a difference without adding seizures. They looked at her infected IV site as well, and gave us some special dressing to put on the sores to help them heal faster. We'll check back with them in 3 weeks, and of course, I continue to talk to Nurse Sylvia almost on a daily basis - she has been such a help!
On Friday we had our follow up with Jenelle's GI Doctor. The results of the Upper GI were fine and there is no blockage, however Jenelle may be headed for a G-Tube because she is considered "at risk" for aspiration of food due to her low muscle tone. They want to try more therapy first to see if that helps her swallowing, and they think the G-tube issue is something we can discuss again later in a few months. Also, Jenelle has officially fallen off the chart in weight, and is now considered "failure to thrive." Hopefully the high fat content of the diet will help, but this may be another reason for the G-tube, to see that she continues to get the proper nutrition. I mentioned Jenelle's two UTIs, and they asked me to relay the information to our kidney doctor as this could be a sign of a condition called "kidney reflux." I'm not exactly sure what that is, but I know it is not good. We see the Kidney Doctor next week, so that is good timing.
Friday afternoon, I realized that I hadn't been giving Jenelle the right amount of food, and in some instances, have been giving her only a half of meal instead of a full meal. I called UCLA to break the news, and they told me to hold off on adding more carbohydrates until Jenelle was getting full meals for at least two days. I feel horrible, but at least it didn't hurt her ketosis. The unfortunate part of all this is that now I have to "force" feed Jenelle even more of the food she already hates! Not fun, but we must give this our best effort!
Our weekend was busy as we babysat our nephew Trevor on Saturday and Sunday. Trevor is 6 months younger than Jack, and the two love to play together. For those who don't know Trevor personally, Grandpa Curran has nicknamed him "full time" (as in it takes your "full time" attention to watch him because he is so active!) We were very tired as Sunday evening came around and Jack cried when Trevor had to leave. After Trevor went home, I noticed that Jenelle's face was starting to look red with hives. She kept rubbing her face and was obviously distressed. I kept an eye on her and as the rash kept getting worse, I realized she was having an allergic reaction to something. I gave her a dose of Benedryl and called the on-call Pediatrician. At this point, it was almost 11:00 at night. We watched her throughout the night to make sure she wasn't having a problem breathing. She seemed fine, and slept very well after the Benedryl. When I woke her yesterday morning she rolled over to show me that her face was red, swollen and her right eye was almost completely shut! Off to the ER we went!
Once we got to the ER, the good news was that she was breathing fine. After I removed her clothes, we noticed a red dotted rash everywhere. They gave her IV fluids, IV Benedryl, Prednisone, and Zantac and after a few hours, she looked much better and I could see her pretty eyes again.
The ER doctor determined she had an allergic reaction to the Keflex we started last Thursday, and sent us home with more Prednisone, Benedryl and Zantac. Poor baby girl! However, the good news in all of this is that her seizures remained stable and she had very few overall! Normally, something like this would send her into a grand mal! Today she is doing great and looks practically normal, with only some puffiness around her eyes. Brett asked if I had taken a photo of her at her worst, and I told him "no way!" Not sure anyone would want to see a face like that!
So, things with the diet and seizures are going well - if only we could keep "other" things from happening to our girl, we would be fine! As always, she is a trooper. Thanks for the continued prayers and I'll update again as soon as I can!