Neuro changes

We met with Hannah’s neuro yesterday.

Even he noticed that Hannah seemed more “lethargic and loopy” compared to her last visit with him a couple of months ago.   So the plan is we are going to reduce the Klonopin back to where we were at a couple of months ago which is 2 mL, 2mL, and 3 mL daily instead of 3 mL three times a day.   Hopefully in a few weeks, we will see Hannah get back some of her independent spirit and drive to crawl and play with her toys instead of just wanting to be held all day.

We are going to hold off on the sleep study at this point because I don’t feel her seizure activity is very active while she sleeps these days and because we really want to optimize her Klonopin to a stable level before we start playing around with other meds.   I feel comfortable with that decision, although once we move to the new house in a couple of weeks, we are going to start charting her O2 sats overnight to see if perhaps she needs to be on oxygen at night and let the pulmonologist know when we see him in a few weeks.   (It is difficult to do it now because the equipment is downstairs, and the oxygen concentrator is not portable enough to bring up and down the stairs safely).

She was definitely a bit more alert and happier today.   The Cipro has definitely started working to help with that and also her secretions which are already going back to being white and clear instead of yellow/greenish and thick.

We will meet up with her neuro again in a couple of months to see where to go from here.   In the meantime, I’m still going to work to try and get Hannah an appointment with Dr. Sanger, the pediatric movement disorder specialist from Children’s Hospital Los Angeles.   We also have appointments with her pulmonology and GI doc within the next month so we can also work on the O2 sats and reflux issues to help make her more comfortable.

Hannah also has her big evaluation with the school district in a few weeks so we can get her ready for transition from Early Intervention in a few months when she turns 3.   On a very sad note, we lost our EI service coordinator to a new job just recently – Hannah really bonded with her, and I hope that she can come visit with Hannah once we get settled as a “playdate” and not for “work.”

Lastly, Hannah’s stander came in today.   Metal blue (although I could have sworn I ordered a different color, but oh well).   After meeting with her orthotist today to do a followup on her leg braces, I think working with the stander over the next few months will also help strengthen her core as long as the decrease in Klonopin does as wel hope — give her more alertness, balance, and less of a drunk feeling!


  1. So glad that the stander is in. Sounds like things are moving and grooving!