Wednesday, September 12, 2012

Letter to the school... about Makenna

So my support group has this letter they use for the school's to help teachers and nurses understand a little better with what is going on with their child. So after speaking with the girls teacher, she said she would like to have it. So I typed it up and plan to give it to her tomorrow. But thought I would post it for future reference and for anyone else it may help.

This letter is to provide some background regarding Makenna Johnson for her teacher(s) and the Nurse.
My assumptions are that teachers can and will develop their own ways of working with Makenna, and that the things I see as a parent may not be relevant to the classroom.
Makenna has been diagnosed with Multiple Sugar Intolerance, specifically Lactose Intolerance and Fructose Malabsorption. This is not life threatening, but may have some symptoms if she is not following a strict diet. 
About Fructose Malabsorption:
1)      Fructose Malabsorption blocks tryptophan absorption in the gut when more fructose has been consumed than the body has ability to absorb. This has a number of effects:
  • Low absorption of tryptophan (rigid emotional behavior, overreaction to ‘unfair’, trends toward self, cannot calm self down)
  • Low melatonin levels (poor sleep)
  • Low serotonin levels (agitation, poor impulse control, low social inhibition, uncontrollable rage/anger, mild/moderate depression, anxiety)
  • Low serotonin also causes easy bruising, and under-eye circles 
2)      Excess fructose can also cause gas, bloating, diarrhea, and constipation. Most people with GI symptoms get one or the other. Makenna trends toward looser stools/IBS symptoms if she overeats fructose. She also has similar reactions to lactose.
3)      Both polyols (sorbitol, xylitol, etc.) and fructans (soluble fiber, inulin, FOS) also block absorption of fructose, causing the same symptoms as above.

4)      Symptoms start 20 minutes to 2 hours after eating a ‘wrong’ food or a ‘wrong’ amount of even a safer food.
5)      Symptoms last for three to five days and are cumulative (so further errors compound, and even mild errors can compound).

6)      FM is very common (between 1 in 3 and 1 in 6 people have it), but is often variable or mild. Makenna’s reaction is not mild.
Makenna’s specific FM profile is currently:
  • At school, mainly this shows as being fidgety or being easily distracted when she has overloaded her diet.
  • Bruising, including pink to purple circles under her eye.
Issues that are more likely at home, but could also happen at school: 
  • Some rare loose stools, occasional urgency or cramping
  • Tendency to become very physical or fidgety (this can be helped with physical activity)
  • Emotionally ‘stuck’or seems lost (stubborn, emotional, ‘locked up’)
  • Anger over injustice or unfairness out of proportion to the event (behavior closer to what would be expected of a much younger child) – this should only happen on rare occasion at school if at all (there’s enough function to suppress it, usually)
  • Makenna will only bring safe foods to school – we are still learning, so we may slip up at times.
  • We will provide safer alternate snacks for her to use when others have brought a special treat. If known ahead of time, we ask that we are notified in advance so we can provide her with a special treat she is not left out. Most drinks will be off-limits, other than water and a small amount of milk.
  • Some wheat-free/gluten-free foods will be allowed (wheat has both fructose and fructans), but these will be provided by us as the other ingredients in gluten free foods may not be safe.
  • Any teacher can ask for a list of FM-friendly foods if they want one.
  • We will trial new foods early on weekends (Friday) and usually when there is an extra day off (trying to keep impact of trial failures out of school).
  • Not all errors are possible to detect due to the cumulative issue – watch for pink circles under eyes, and worsened fidgeting.
  • Aside from her Sugar Intolerance, Makenna is a normal 4 year-old, so some behaviors may just be normal kid stuff.
We appreciate your understanding and help as we learn and teach our daughter how to live with this. If you have any questions, please don’t hesitate to ask.

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