Thursday, September 12, 2013


We got back from Milwaukee this morning.  It was a fast trip.  Emily has gained 12 pounds since we saw Dr. Li back in March.  No more "failure to thrive" for this girl. She's 35 pounds and 35 inches tall, a nice little butterball.

What we learned:

  • The sato variant of CVS is when the onset comes with high blood pressure and low sodium. 
  • They are going to try increasing the amitriptyline to 40 mg/day and see if that helps give a longer period between episodes.  We are so thankful to already have a scheduled visit to her cardiologist in two weeks so he can check her then to make sure this is safe for her.  Dr. Philips already approved trying this if Dr. Li thought it might be helpful.
  • We can try sedating her at home.  Sometimes this will "reset" the system and squelch an episode.  Potentially it should put her out for eight hours.  Frankly this sounds terrifying to me but worth trying.  I will probably be pounding on the doors of the nurses I know for some advice/help.
  • If nothing else works it might be possible to have her sedated at the hospital.  They would put her in ICU and knock her out for 18 hours.  She would not need a breathing tube or anything.  It sounds very extreme and terrifying...but it may be worth it.  This can "reset" the system.  If she continues to have 11 day episodes every 108 days that means that at least 1 month of every year she will be hospitalized and very sick.  If a 24 hour visit to ICU can keep the misery down to a couple days every year it might be worth it.  For school aged children this can be very important to their academic success.  If we continue to homeschool we can provide more flexibility for her but I still think that's a lot of time to be that ill.
I'm so glad we made the trip.  It has been suggested that maybe we could switch her back to our local pediatric GI now that they know what meds have been somewhat successful.  I've felt pretty strongly that I'm willing to make the trip to Milwaukee to have up-to-date information from someone who specializes in this pretty unusual disease.  We think it's the right choice for now.


  1. Sounds like you got some good info. Yay! Em is looking so old-can tell she's growing! Miss you. Will call soon!

  2. Sounds like the trip was very worthwhile! As for where you take Emily for the doctor - go where YOU guys feel is best for Emily & where you feel the most confident. I agree with you that Minnesota sounds pretty good for now!
    Continuing to pray for all of you. Love you!