Alert. Clear. Vocal. HAPPY. These are a few of the words I would use to describe Madison lately, and it’s been wonderful! What’s changed? Well not much, aside from starting a new CBD and weaning one of her seizure meds a few months ago. We’ve also finally figured out a good combo for keeping her constipation under control, and her teething spell has just about ended. Okay, so maybe a few things have changed! Regardless, she’s been a new child lately and John and I have been soaking in every minute. One of the worst things about epilepsy, is...
The Domino Effect
Epilepsy sucks. Diabetes Insipidus sucks. Hypopituitarism sucks. All of these conditions are difficult to mange on their own, but put them all together and the complexities can be overwhelming. With so many systems out of whack, a tiny change in one can greatly affect the others. Whenever something is “off” with Madison there’s never an easy answer as to why. We always have to look at the whole picture and it can make things quite challenging to say the least. So far, we’ve been pretty lucky in her care with most of her systems running smoothly and levels stable....
2018 in Review
I’ve been racking my brain trying to determine how to write this post. How to reflect on a year that has in all honesty, been incredibly hard on our family. How to really sort all of the bad from good and heartbreak from hope. I want to start the new year on a good note, which is hard to do when the end of this year has been particularly painful for us. So I’m gonna start with the not so great moments in the hopes that if I save the better moments for the end, those will be what...
Keto Update
If you’ve been following along you know we were hoping to start Madison on the ketogenic diet as a means to relieve her seizures. The diet has a good success rate, especially for the type of seizures Madison has, and when effective can allow for a reduction or removal of medications. I attended a seminar all about the diet, it’s risks, the process, efficacy rate, etc at CHOP back in October. Read more on that here. It was super informative and we hoped to get Madison admitted in January or February if the team felt she was a good...
Meet Madison: A Hypothalamus Gone Haywire
Today we had a couple of routine appointments with some of Madison’s specialists, including her pediatric endocrinologist. Many of Madison’s diagnoses relate to her endocrine system. The hypothalamus is a portion of the brain that links the nervous system to the endocrine system via the pituitary gland, and unfortunately for Maddie, hers was damaged by the meningitis infection. The hypothalamus controls many things such as body temperature, thirst, sleep, and various hormones. She sees her endocrinologist approximately every 3 months, and we have routine blood work that needs to be done in between these appointments to ensure her electrolytes...