So, Em’s headache – which had been totally relieved since starting the Diamox in September – is back with a vengeance, along with light and sound sensitivity. She is back to being pretty miserable and actually wore her Miami J collar all night last night. On the upside, the collar did tamp down the headache this morning, so she hasn’t had quite as bad a day. Still, the headache is a 6/ 10 today and, while that is better than an 8, it is still bad enough.
I talked to the nurse at the neurologist’s office this morning. We are going to add in 125 mg of Diamox in the morning, so that is doubling her dose. She took the additional dose today but it doesn’t seem to be doing a lot yet. It might take a few days to really get this under control.
We are going to do some blood work to check her potassium and serum CO2 levels. If the CO2 levels are too low, the Diamox won’t work. And Diamox can lower potassium levels.
We will have to see if it is just a matter of needing to increase the dose or if her CO2 levels are too low and thus negating the effect of the Diamox. If so, she will need to take baking soda capsules to reduce the amount of acid her body is making.
So, it is probably a relatively easy fix. I would be lying, though, if I said I wasn’t freaking out just a little bit. I hate like crazy to see Em back to hiding in the bedroom, isolating herself from light and sound – and thus, from life. But, we know the Diamox has worked wonderfully so far and I know this is just a little speed bump. The Driscoll Theory has made it possible for my daughter to be headache free and has preserved her brain from further damage – so we can handle a little tweaking and an occasional adjustment!