Waaaaay back when my oldest was 7 I posted this very frustrated post:
https://allergic2motherhood.blogspot.com/2014/Then a year later I posted this:
https://allergic2motherhood.blogspot.com/2015/06/blood-sugar-mystery-follow-up.html
Here we are 5 years later still dealing with it:
Well we finally found some answers, and it wasn't at all what we expected. We began testing for neurological siezures and found inconclusive nothings. BUT at least we had already done those and so when an opening finally was available at the neurologist we had a pile of paperwork to share and no answers. What the neurologist determined was that D had Migraine Variant Disorder. This means that she had been in pain virtually since she was 6 years old. Headaches without knowing that that was not normal. She grew up in pain and all of the other symptoms of migraines and she just thought this horrible life was what she was doomed to live. Living this way for so long caused the drop in self esteem we had seen and the tendency to be a hermit and avoid any location where headaches got bad enough to actually slow her down.
As a mom there is not much more humbling than realizing that you missed something as simple as a headache all of these years. The reality is though her pain tolerance has always been high so she noticed the other symptoms of a migraine long before she registered the pain. She had also developed some anxiety issues over these years, because of second guessing herself. We started her slowly on some meds to prevent migraines. It didn't take long and we noticed a definative shift in her outlook on life and how our relationship grew. We fought far less, collaborated more, and really started to enjoy each other again.
Her body is adjusting to the meds. We have had to up her dose several times now as headaches become more frequent again. The difference is that now she has pain free times so she really knows when the pain is coming back. The instant mood shifts no longer happen. Although she is now 13 and so any parent of a teen girl will tell you that mood swings are natural, but those mood swings have a predictable pattern and you can usually see them coming if you are paying attention. We haven't completely ruled out silent seizures but we are more confident that we will be better able to see them if they do happen.
This is HUGE for our family and her friends. Our neurologist has moved off island and we know that we will have a revolving door of neuro specialists for her future, but we are so grateful for the ability to see these drs and have some answers finally.
