The Rowes in the Rose City: Tough Decisions

This is one of those times I wish one of us had gone to med school. Even so, I'm not sure our choices would be easier, but at least we might feel more informed. I spend most of my non-doctor waking hours researching on the internet, and connecting with others who have "been there, done that" -- and still, no easy answers. This Jordan certainly is a tough one.

She seems miserable. Before the ACTH she was a mellow, easy going girl, who had "recovered" from a serious barfing affliction, and really liked to be held (but could handle solo time pretty well, too). And she slept about 7 hours straight at night. But infantile spasms are known to halt development and can be very damaging, so it was important to get them under control as quickly as possible. Now that the seizures are under control (at least the IS, although it could return at any time, and other seizure types are likely on the horizon) we're not sure what to do to make her happy or comfortable. She still screams almost all of her waking moments. And she's not sleeping much, so that's alot of screaming. It wears me out pretty quickly. At least when she was on the ACTH we understood why she was screaming.

Now we're not sure if the ACTH is just wearing off slowly, if she's having teething pain, if she's irritable because of her rising blood pressure (again), or if this is her "true" personality, just revealed now that her brain is mis-firing a little less. Apparently it's common for kids with neurological problems to be fussy & screamy, especially the high-pitched wail that really emerged during the treatment (when the only thing developing were her vocal chords).

So, we have to decide. Does she need anti-anxiety medicine to calm her waking hours and make her sleep more? Will it make her happy and feel better? Or will it just make us happy and feel better? Do we just hold her and love her and let her be who she is, even if that's "the crabmaster Rowe?" Or do we give her the medicine to make her feel better & be happy, even if it is a medicated calm & happy? Then there are the side effects to consider; are they worth the risk? Would our family be better served if we all were able to sleep more? Is it worth just gritting our teeth and seeing what the future will bring? Or will we miss the boat, and make things worse for the future by not medicating her? It's just so complicated, and unfortunately, I don't think there are really any "right" answers. If so, the docs would just tell us what to do. Even they are wishy-washy. So, perhaps med school wouldn't have helped us now anyway.

Today we meet with the neurologist to review her EEG from Tuesday, and determine our new path. Anti-anxiety meds, anti-seizure meds, other meds to make her life better, to help her develop. I'll be all studied up on the options: The Ketogenic Diet, Zonegran, Topamax, Keppra, Depakote, Lamictal, even Transene for the anxiety. Many parents in our position have made many different and sometimes controversial decisions. In the end we'll just have to choose what we think is right for her and for us, and what we can live with tomorrow, next month, or in 10 years. But even that is almost impossible because our moods & feelings & emotions change all the time -- that is the roller coaster of life. So, we'll just do our best and know that whatever we do it is the right thing for all of us, based on what we know now.

On a slightly happier note, we are starting to realize some small improvements. She is calmed by touch (which is very important to note, and most of us take for granted), and she's starting to smile occassionally. These things suggest that she is effected by the world around her (some neurologically ill people are not). Today she calmed down when she was taken outside, and gave a huge smile just as the sunlight drenched her face. Both Devon and Nana Noma have noticed smiles during bath time recently (but I have yet to catch a glimpse of them), so perhaps she is reacting to the world around her, which is a good sign (baby steps, but we'll take them).