On the road back from Houston

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We’re headed back after an exhausting journey at the blue bird center.  We got a lot of information.  Some of it was positive.  Some of it was less reassuring.  I’ll update this blog with specifics when I have a minute.  The biggest lessons were there are a lot of possible developing treatments, they always need more fundraising and we have our work cut out for us.

We did not get an answer on where we would be able to get her the best care but we were told she’s likely out of the regression stage and that she is likely to remain relatively happy.  So one of two main questions answered with the last one being a major relief.

Here’s the full summary:

Met with the neurologist, Dr. Neul this morning and it went well.  It wasn’t as reassuring as the other day but he did allay some concerns.  Namely he felt it was unlikely, considering her current mobility, she would end up in a wheelchair, though stiffness and difficulty walking is still something to be concerned about and bracing may become necessary to help with the toe walking.  He also felt like she was out of the regression, though until she’s been out for a year, he’s not willing to commit to that.  He put her as a 12 on the severity scale of 50 but suggested seizures, breathing issues, scoliosis are all symptoms that occur from 5-12 with seizures becoming more regular in adolescence.   And he did suggest that she’s likely to remain a generally happy girl.  The specific things to note – 1) he’s not the quarterback and he’d like a physical medical rehab doctor to be the quarterback.  I don’t know what that is.   2) He didn’t give us a sense of where we should be, though he did mention the Oakland and CHLA.  He basically recommended being close to a Rett clinic, though we may ultimately decide it’s best to be closer to family in San Antonio, TX. 3)As far as schooling he suggested whatever we do she’ll need an aide to assist with communication, so we’ll need an advocate to try to work that out with the district.  4)He says communication needs to be the first priority. After that gross motor (ambulation) and after that functional hand use.  5)Some drugs/supplements that may be helpful, at some point, though we all agreed it wasn’t necessary yet:
Ritalin – If her attention gets in the way of her schooling in a real meaningful way
Xanax – If her anxiety gets in the way – though it won’t suppress any symptoms which may seem anxiety based but are more likely neurological loops
Carnitine is a supplement that has proven some attention increase but may make the girls smell weird
Trazadone can help with sleep.

 

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