Candice Mastocytosis Triggers and Reaction Information Sheet

Known Allergens and Triggers

NSAIDS (such as Advil, Aleve, etc)
Sulfa Drugs
Mosquito Bites
Dramatic changes in temperature- from hot to cold or cold to hot
Any Amount of Humidity
Emotional Changes
Acidic Foods and Drinks (lemons, limes, pineapple, tomatoes, and their juices, etc)
High Histamine Foods and Drinks (avocados, brussels sprouts, cabbage, etc)

Reactions

Candice can usually feel when a reaction is about to happen and will inform someone that she doesn't feel well and that it is starting.  She will say she is having a masto reaction.  The sooner she gets the proper medications to stop the reaction the sooner she will feel better and will increase the possibility that she will not progress to the serious category of anaphylaxis.  In the event she complains of headache and/or bone pain please give Acetaminophen.

Mild Reaction- Minor skin changes such as her "spots" on her skin will appear to look like a mosquito bite.  She may become irritable and mildly feverish and flushed.  Her eyes and nose may become reddish to purple and swell (looks as though she is tired or was recently crying).
-if this happens please give Cetirizine (Zyrtec) and Ranitidine (Zantac) as well as use her cooling towel and any other cooling products that are available (cool mist fan, cool vest, cold water) to attempt to stop further progression of more severe symptoms and monitor for progression of more severe symptoms

Moderate Reaction- She may have some of the above plus...major skin changes such as the "spots" on her skin will raise and fill with fluid, be painful, itchy, etc.  She could have flushing, this is where she turns red and it feels hot to the touch (like a fever).  She may become lethargic, fatigue, not interested in doing things she normally would enjoy doing.  She may have a headache.  She may have bone pain (especially leg/feet).  A temper tantrum that happens in a matter of seconds with no apparent reason could occur.  She may have diarrhea or complain of GI (tummy issues), bladder control issues,  or even begin vomiting.
-if any of the above happen she must be given her emergency mediation Benadryl to attempt to stop the progression of more severe symptoms

Severe Reaction- Anaphylaxis may occur.  If this occurs immediately give EPI PEN and call 911 to transport to the nearest facility.  Then call parents.

Cool Vest

Candice started Kindergarten last year and I knew that outdoor activities such as recess and P.E. would be an issue, especially here in hot and humid Houston, TX.  I wanted her to have a cool vest to use so that she could still participate most of the time and not feel left out.  At the time we were trying to get our insurance to help cover some of the cost as they are pretty expensive.  It was an ongoing long process.  So while I was still trying to get them to help I decided to make a temporary one.

I purchased a child size life preserver. I took out the flotation devices and put velcro in the bottom of the vests back and sides where the flotation devices had been to create pockets.  She could wear the preserver over her clothing and it had fasteners that could be tightened and/or loosened if needed.  I also purchased some cool packs that could be frozen and last up to about an hour at a time.  The cool packs could be inserted and removed from the pockets because of the velcro.  She was able to wear this and participate in outdoor activities for her Kindergarten year, unless the heat was extreme and then she would participate with another class in either Art or Music class.  She didn't feel left out and had a great year!  Below is a picture of the homemade cool vest.

Unfortunately we were not able to get our insurance company to help out with expenses and Candice outgrew her cool vest therefore needing a new cool vest.  Candice's grandma Marion and grandpa Joe bought her a cool vest this past year that she should be able to wear for some time and came with sets of cool packs that last up to about 8 hours at at time!  She is using it this year at school, her first grade year, and is able to participate in recess and P.E. even with it being very hot and humid here.  She really loves it!  Below is the link to the cool vest.  We are truly thankful for this cool vest!


Cool Vest