I decided to put a little summary of what has been going on with my sweet C here on my blog. When I started (trying) to blog, it was with the intent of keeping myself and our families up to date with our lives. And then, well, life sort of got in the way. I would love to say that, starting today, I will blog EVERY day. But Mama said, "Don't lie." Just for my own records and for those who want to know....
Caleigh was diagnosed with absence epilepsy at the end of her kindergarten year--age 6. After several years, a neurologist AND an epileptologist trying every medication available, the diagnosis was changed to absence epilepsy, medically intractable. In May of 2011 she had surgery at Texas Children's Hospital and received a vagal nerve stimulator. Seizure activity dropped to almost nothing, and we were even able to wean her off one (ugly) medication. Late 2012, noticed some seizure activity increasing, but only off and on. Fast forward to about a month ago--she started having severe headaches and increased seizure activity. We went to our friendly neurologist--he looked in her eyes and immediately got on the phone with a pedi ophthalmologist who saw us about 2 hours later. What they saw were swollen optic nerves and signs of increased pressure in her brain. She was scheduled for an MRI and spinal tap to confirm the diagnosis of pseudotumor cerebri. Yesterday we spent the entire day at Methodist Hospital and Methodist Plaza (thankfully linked by an underground tunnel) having and MRI, MRV, spinal tap (without anesthesia--my daughter is tough!), numerous lab tests, and a chest x-ray. The neurologist called me this morning and I had to smile. He was saying how "fortunate" we were that Dr. C (eyes) just happened to be in that day a couple of weeks ago and that he could work us in AND how "fortunate" we were that Dr. D (radiology) was at the hospital yesterday and that it could be worked out for him to do Caleigh's spinal tap. It's not fortune...it's blessing. And that little nurse angel, Irma, was instrumental in getting Dr. D to "be" available for us yesterday--but that's another story.
So this is where we are--the MRI/MRV were normal. The pressure they measured on the spinal tap was NOT normal. The diagnosis is pseudotumor cerebri. Caleigh is going to start a medication today that will work on lowering the pressure in her brain. We will follow up with the neurologist in 2 weeks. If the medication doesn't work, there are other things they can do--such as place a shunt in her brain to drain the fluid. We're going to pray that the medicine works...we expect that it will. She rested well last night, after an excruciating drive home--then had another episode of back/head pain a little while ago. As soon as I got her flat, she fell asleep. The doctor says this is due to small amounts of spinal fluid continuing to leak and a resulting lower than normal pressure. Hopefully after a few days things will get back to normal. Briley normal that is. :) Thank you so much for the continued prayers. I know God has a reason for all of this.
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