Movement Disorder Specialist visit

14 Aug by Carrie

We met with Dr. Terence Sanger down at Children’s Hospital Los Angeles a few days ago.  We is one of the leading pediatric movement disorder specialists in the country, and we went with an open mind, not expect answers, just hoping for some, well, hope!

It went better than we expected!   It was very clear that he went through Hannah’s paperwork very carefully before our meeting because he asked very specific questions that could only be found in the paperwork.   He spent almost 30 minutes with us (along with his fellow, two residents, and a videographer who tapes all of his clinic visits).

It was a very eye opening visit and gave us a LOT of things to look at and to think about.

  • He doesn’t believe that Hannah’s movement disorder was caused by oversedation during her hospitalization.   He believes it would more likely have been caused by a hypoxic brain event during that initial seizure.  He brought up how her CO2 was really high during that time and that her O2 sats in the ambulance were in the 50s.     Her movement disorder was clearly apparent just 7 days after the initial event, 5 days after intubation.   After really thinking about it more, Daddy and I both remember that right after she was admitted, she had a difficult time breathing when she was awake (causing more respiratory distress) and when she was sleeping, she was breathing much better.    Coincidence?
  • He is a strong believer against using Keppra for seizure control in children who are already developmentally compromised such as Hannah.    He also is not convinced that she is having subclinical seizures while she is sleeping based on our description but may likely be cortical myoclonus (which is a Gaucher symptom).    Again, after thinking about it more, Hannah’s Keppra was upped in November due to the results of that EEG back then…and her fine motor control and balance started getting worse around Christmastime.   Coincidence?
It may very well be coincidences.   But at least we have someone willing to help us determine if it is or not.
There was so much more that came out of the visit, and we both felt really good about it because it opened up quite a few new theories as to what is going on.   Better yet, these theories give us something to try and work on adjusting to give Hannah a better quality of life.   Even if they don’t work, at least we are trying something new and not sitting around and watching her progress more.
So for now, the plan is get Hannah off the Klonopin and the Keppra and do another EEG.   There are other medications he would like to try if she does need them for her movement disorder and/or seizure disorder.   He is going to work with his Pharmacology department on that because he doesn’t want drugs that primarily metabolize in the liver due to Hannah’s enlarged liver from the Gaucher’s.

We also need to get copies of her MRIs from the hospital as well as other documentation for him to go through.

What we both appreciated was that he really looked at her situation not from a Gaucher’s point of view specifically, but he looked at her clinical and presentation history first.  The Gaucher’s plays a part in all of this, how can it not?   My gut has always told me that her Gaucher’s may have given her the propensity for this type of brain involvement, but it wasn’t specifically caused only as a result of having Gaucher’s.

Best of all, our neuro here in Vegas was a student of his when he taught at Stanford, and they have a good working relationship already established.   Now we just need to get going on this!
~ Filed Under: Hannah's Fight

Comments

  1. JIll B says:
    08/14/2011 at 11:35 am

    I am glad you have found someone who is willing to take a different look at Hannah and give some options for her treatment. As always, I admire your determination in advocating the very best for her health and quality of life, including thinking “out of the box”. Many prayers to all of you.