Dysautonomia & EDS

This is my gathering place for all things related to Amber's Dysautonomia / Postural Orthostatic Tachycardia Syndrome (POTS), Ehlers Danlos Syndrome (EDS), and resulting Fructose Malabsorption.  While this blog is mainly about our homeschooling adventure, Amber's conditions dominate so much of our life that I needed a better way to organize that information.


**Amber's Story - How we arrived where we are today. (Updated June 2016)

General Information / Resources (POTS)
General Information / Resources (EDS)
General Information / Resources (FM)
  • Favorite Fructose Malabsorption Resources (Nov. 2013)
  • Fructose Malabsorption Science Unit - This was quickly written to aid Amber in understanding her condition.  
  • Amber's Sample Diet - January 2014
  • Low Fructose Products  

Recipes:

I usually modify gluten free recipes to satisfy Amber's specific tolerances, my favorites coming from Nicole Hunn at GlutenFreeOnAShoestring.com.  I also use recipes from various blogs and websites listed in the resources post above.  On a very rare occasion, I have to develop my own recipe or completely rework another.  Those are the recipes listed here.  You can also find more recipes that I've collected at my Fructmal Recipes Pinterest board.
  • Low Fructose Almond Milk Ice Cream
  • Low Fructose Mint Brownies - An old Christmas staple in our family, converted for Amber.
  • Snickerdoodles - an alteration of my mom's old recipe, turned into a low fructose version.

3 comments:

  1. ShannonJune 18, 2024 at 1:00 PM

    Hi,
    Just came across your blog from a search related to Lutheran home school. I saw about your daughter's fructose maladsorption and couldn't help remember how my son had suffered for years. Since he was just about a year old, he had reactions (diarrhea) to bread and cereals. The pediatrician thought it was allergies. From food diaries, I found out he had fructose intolerance and as you know fructose is everywhere. In college a long time ago I studied ruminant microbiology, to me his symptoms seemed liked a coccidiosis, really caused by protozoa. I convinced a doctor at the Children's Hospital of Wisconsin to empirically treat. After only a 3-day course of Alinia, he was cured. In just a month, he started putting on weight and then grew! By pre-school age (~4yrs.), he was bigger than most boys. Maybe not the case for your Amber, but May God bless and heal her anyway He chooses.

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    Replies
    1. ChristyJune 18, 2024 at 1:26 PM

      Thanks Shannon. We continue to work with her diet and have found more things she can eat and a lot more she can't. Soy appears to be a big problem as well. The GI doctor continues to search for an underlying cause as she feels we are still looking at symptoms of another condition. I'm happy that your son was cured with a short course of medication. It is so difficult to see our little ones sick. If only we could find the magic pill to turn on Amber's non-functional fructose receptors.

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  2. ShannonJune 18, 2024 at 1:01 PM

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