Yesterday I went to pick up Kendall's prescriptions. To make a very long story short, it didn't go as planned. Apparently everything changes and clears at the first of the year. Medications that were approved before are not guaranteed approval this year. I had a ginormous tantrum in CVS when the medication I called to check on TWICE was denied by insurance. I spent the majority of the day on the phone checking on it and talking to the pharmacist and insurance company. It was the pharmacy's fault. They were coding it wrong and ignoring my request for them to change it. They were understaffed and extremely busy. I get that. My patience did not.
So after having a crying fit in the parking lot, I pulled myself together enough to get home. I did get it worked out and picked up last night. But the problem is I will probably have to go through the same thing next month. AND in two weeks at another pharmacy for her insulins. Hopefully I can get the local compounding pharmacy to fill everything all in one place. Maybe then the turn over of pharmacists won't be as bad as CVS. Something needs to change if I'm going to stay sane this year.
On the way home from the pharmacy, the Neurologist's nurse called to give me the updates on Kendall's latest lab results. Her endocrine ones were drawn at the same time and turned out OK. Apparently with what the Neurologist ordered, there were a few abnormal results. Her potassium levels are abnormally high. This surprised me since they are usually low. And her triglycerides were also high. With the diet that's not surprising. We are re-drawing some of them on Thursday because it was noted that it hemolyzed quickly. Also not surprising since she has a clotting disorder! But this means we may visit making more changes on the diet. I pray we don't have to get off the diet and add another drug though.
Although she's been doing great, she isn't sleeping. I don't get it. She still has lots of energy during the day. She. Just. Won't. Sleep. So neither do I.
She had a very nasty seizure last night. It lasted about an hour. The meds were given and she still didn't sleep. She wasn't very fussy, just awake. So, I don't know. Her sugars are all over the place, so we may start the pump. It's already in her closet, so its ready to go if we decide to do it. That will just require another hospital stay...and I'm not ready for that yet!
One day at a time. One thing I know for sure is that, my Epileptic, Diabetic, Keto Kid sure is a happy girl. She's full of smiles and lots of new babbles. And she's gaining weight. She's now 24 pounds. Her head circumference is now 17 and 1/16 inches. And she's SO stinkin' sweet!
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2 comments:
Jocalyn,
My heart goes out to you.I hate the stupid seizures.
Dealing with insurance sucks. I've actually dropped all the big chains and went with a local "Good Neighbor" pharmacy, and let me tell you, they are an AWESOME neighbor. The pharmacist Mary even knew what the ketogenic diet was and had a little training in it! They even had sugar free carnitine when NO ONE else did! Naomi is way different than Kendall, but when she wouldn't sleep we had to up calories, of course she's a run around kind of kid, with no sense to know not to climb on the table, where she has a seizure every time just (thank God) as I get to her! Also I don't know if she takes carnitine, but we looked into it a ton this weekend and found a site that said not to give it after 4pm because it can cause an energy boost and cause sleeplessness. Also ready the same thing about MCT oil.
It's so hard to be a mom, a Dr., a nurse, dietitian, allergist and detective!
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