Friday, December 21, 2012

Moving Forward

I feel like we are picking up a little momentum where Peyton is concerned right now.  I mentioned yesterday that I had spoken with Dr. T. in Genetics in Boston regarding the latest news on that front.  I tackled 3/4 of the paperwork that needs to be done for the Manton Center - that's the research group in Boston.  The other 1/4 is Peyton's portion.  Turns out the rest of our paperwork was fairly straightforward.  Peyton's, of course, needs the more detailed medical history and requires more effort than I can muster up right now.  I have been sick for the past few days.  A trip to urgent care yesterday and a Z Pak should do the trick.  Then I will finally be able to get this done and on its way up to Boston.  The other 3 packets of information are already en route.

This evening I received a call from Peyton's Neurologist {Dr. K.} here in Charleston.  He was calling to discuss Peyton's case with me in light of his recent conversations with Dr. T. in Boston.  I think that's his new best friend now.  If ever I could be a fly on the wall in the middle of a conversation - it would be the one between the two of them.  I think it would be fascinating.

Dr. K. is aware of the possibility for Peyton to become involved in this on-going research study at NIH in Bethesda, MD.  He seems to be on board with this plan.  Dr. T. asked us to consider it and contact the other Dr. K. at NIH regarding the study if we were interested.  Dr. T. could go either way. Dr. K. here at MUSC actually knows Dr. K. at NIH.  He seemed quite interested in this study to see where it might lead for Peyton.  I think we all agree that it falls into the category of "no stone left unturned" or "nothing ventured, nothing gained".

The next step right now is the lumbar puncture that I had previously mentioned.  Dr. K. at MUSC is going to do that.  He wants us to think about it, but really, it is the next step we need to do.  It's necessary for Dr. T. in Boston to have results of a lumbar puncture to help establish a base line prior to any form of copper supplementation.  The LP is probably going to happen around the second week of January.

While I had him on the phone, I asked Dr. K. about increasing Peyton's Neurontin.  She is on this for pain for her hip and shoulder.  The generic name for Neurontin is Gabapentin.  For whatever reason, every time I open the fridge to get a dose or Peyton, I keep calling it Yo Gabba Gabba-pentin.  If you have a small child, you'll possibly find that mildly amusing.  Gotta do something to keep things interesting, right?  I digress.  Dr. K. is on board with an increase in her dose {it's already 3x/day, but the amount given with each dose will increase}.  We've noticed Peyton's pain level in the past week or two seems to be on the rise and we're having to give her Oxycodone between doses of Neurontin.

There is the possibility that Peyton will need a hip x-ray to check the status of her hip dysplasia.  He suggested a possible sonogram as well.  He also suggested that perhaps botox might be considered, but I don't know what my wrinkles have to do with her hip pain! I kid.  Like I said, I have to do something to keep things interesting.  We'll see how the increased meds help and go from there.

That's about it for now.  I was excited to have another phone call from another doctor this week.  Things are moving forward.

1 comment:

  1. Praying for you Peyton

    Praying for you and your family. Hooray Christmas is 5 days away! What do you want from Santa this year? May this be a special christmas this year, because you are here and you are a special gift to your family! happy hollidays.


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