Just Like Starting Over

I guess today we can chalk up to a good day, medically speaking. We had our big appointment with the pediatric neurologist and learned a whole lot about Jordan from him. Most of it wasn't bad, so I guess that means it was good.

She is officially seizure free (knock on wood). Her EEG was clear of all seizure activity*.
*She is having some myoclonic seizures, which are harmless. We all have them while sleeping (to some degree), whether we know it or not. An otherwise "normal" person would not be treated for myoclonic seizures.

Her EEG is now "normally abnormal." Her wave frequencies are slow, and that is expected in someone with developmental delays, but her brain is no longer disorganized and mis-firing. During IS, even if seizures aren't seen, the brain is always mis-firing, and that prevents basically all motor and cognitive development (in fact, most kids lose what they had). For now we don't have to worry about that, although she is at higher risk for developing other types of seizures as she ages, and IS is known to come back in some kids. So, we're not totally out of the woods, but for now we've got a clean slate.

We started tonight giving her a new drug called Tranxene. She's getting a small dose, and we will increase it after a few days. It's very benign (many anti-seizure meds are not, and you have to be monitored closely for kidney stones, kidney failure, liver failure, etc.etc.etc.), and it will help with her "anxiety" as well as help to hold possible future seizures at bay. We did not want to just medicate her because the doc said to, but after some internet research, and some comments from other parents with seizure-affected kids, combined with our discussion with the doc today, it was clear that this was a good choice for us. Hopefully it will put her at ease a bit, and prevent any other seizure types from developing, without putting her internal organs at risk.

We do not have to even see the neuro again until December, as long as she doesn't develop new seizures. Wow, from weekly to quarterly all at once -- that's quite a jump!

The neuro saw some of her leg & arm tremors today and assured us that they are completely benign. Phew, one less thing to worry about.

Jordan does not have to go on any (scary) long term maintenance drugs to control and prevent seizures.

She has developed a pant, (exacerbated by screaming,) that bothers us. We were hoping it was just due to the excess weight gain, but the neuro thinks that it could be an overall characteristic of her condition, and that breathing, like eating, might become a problem for her (okay, clearly this was not good news, but I'm still holding onto the weight gain idea, since the panting started just as she began bloating from ACTH).

We'll have to wait 3 months (beginning of December) to get her to a "baseline." Then, in about 6 months after that (around June 2007), we will have a much better idea about how delayed she will be and what we can guestimate for the future. So, we'll just have to be patient for another 9 months or so to see where we think she might be headed.

Flash, no flash, you decide (dark; no outside light through the winow)

On other fronts, we got an appointment with the neurogenetic clinic at OHSU in mid-October. As with feeding clinic, we will be in a room with~5 doctors and other neuro & genetic specialists, all trying to figure out if they know what is affecting our little Jordan. We also got an appointment with PRIDE, an Early Intervention Program, at the beginning of October. With EI she'll qualify for all types of therapy (which she already gets for medical necessity, but hey if one is good, two must be better, right?), provided by the school districts to help kids get off to the best start they can for education . The facilities there are very new, and great, and the staff comes highly recommended.

Getting rid of the Infantile Spasms has cleared the slate and is allowing Jordan essentially to start over from scratch. So, over the next couple of weeks we should see an improvement in her behavior, and over the next couple of months we'll know about what her "baseline" condition is. We'll be crossing our fingers that she'll be able to make up for some lot time, but we'll just have to wait and see.

For reasons unbeknownst to me, daddy decided to dress Avery like her "sherbet" room today, right down to the yellow socks (baseboards).