Emergency Medical Binder

Candice has an emergency medical binder.  She has one at school that the nurse keeps in her office for reference and for anyone that comes into contact with Candice to read (i.e. teachers, substitute teachers, etc).  I have one for myself that I take to doctor appts and keep readily available in case we have to go to the Emergency Room so that anyone that will treat her will have access to.  All of Candice's doctors and dentists have copies of all important information that is in the binder and pertinent to her treatment and/or prevention of a flare up.

In this binder I have:

*A cover page that says Emergency Medical Information and her name.
*On the inside cover I have a picture of Candice for in case she has a substitute the sub will know who she is by sight.
*Letter from her allergist that treats her for mastocytosis stating that she is treating Candice for mastocytosis, explaining what mastocytosis is, possible and known triggers for Candice, medications Candice takes in an attempt to prevent a flare up, also other preventatives that Candice needs to have access to at all times such as: cool mist fan, cool vest, cool packs, cool cloths (i.e. frog togs), and iced water bottles or thermos, etc.  Her doctor also provided an Action Plan for the school and Emergency Room doctor with signs of a reaction/flare up, action for initial minor reaction/flare up, action for major reaction/flare up, and her emergency number.
*Candice's medic alert information.
*Information provided by Candice's allergist stating Treatment and prognosis of mastocytosis.  This gives information on what mastocytosis is and general management of mastoytosis.
*Emergency medical information such as her name, date of birth, and that vaccines are up to date.  Along with her diagnosis, medications, known allergies and triggers, possible degranulators/triggers, prior history such as illnesses and hospitalizations, pediatrician information, allergist information treating her for mastocytosis, and all emergency contacts.
*Type of mastocytosis she has, categories of her reactions such as mild, moderate, and severe and what to do during each of these.  Stating that she usually feels when a reaction is coming on and will inform someone and to please send her to the nurse asap or if anyone notices anything not "right" with her to send her to the nurse.
*A little about Candice and how a typical reaction for Candice may look and when to send her to the nurse and what medications are to be administered and when.
*Pictures of reactions she has had in the past such as lesions swelling, filling with fluid, bursting and flushing.
*A link to my blog about Candice and mastocytosis.
*Description of Mastocytosis, Symptoms, Treatment, and link to TMS and NIH websites regarding mastocytosis.
*Dental management of a pediatric patient with mastocytosis that I printed off from the TMS website.
*Emergency Room Protocol that I printed off from the TMS website.
*Any and all doctor letters regarding Candice and mastocytosis.

Going to School with Mastocytosis

Candice started Kindergarten last year (2011).  It was both an exciting and terrifying time for us.  She was so excited to finally start school like her older siblings and wanted to make new friends.  We were terrified about how going to school with mastocytosis would turn out.

Candice's allergist that treats her for mastocytosis at TX Children's West Campus in Houston provided the school with a letter stating that she is treating Candice for mastocytosis, explaining what mastocytosis is, possible and known triggers for Candice, medications Candice takes in an attempt to prevent a flare up, also other preventatives that Candice needs to have access to at all times such as: cool mist fan, cool vest, cool packs, cool cloths, ear plugs and iced water bottles, etc.  She also provided an Action Plan for the school with signs of a reaction/flare up, action for initial minor reaction/flare up, action for major reaction/flare up, and her emergency number.  We have all this information and more in the emergency medical binder that I prepared for the school, which stays with the nurse at all times and is shared with anyone that is in contact with Candice (i.e. teachers, substitute teachers, etc).  Candice also has medical alert and a sports band with this information on it, the school has this information as well in her binder. (This is all listed in her 504.)

After these measures were taken Candice had less flare ups during the school year!  She was able to focus on learning and made many friends!  Everyone was very accommodating once they were aware of the severity of the disease.

When school started this year (2012), her first grade year, Candice's teacher was her sister, Briana's, Kindergarten teacher!  She had already met with the principal and school nurse as well as with Candice's Kindergarten teacher to discuss what measures were taken last year to prevent a flare up.  I was very happy to learn this.  Also she emailed me a few times before school started some of her questions.  I let her know that I am available any time for anything she needs to discuss with me regarding Candice and mastocytosis.  Candice's first grade year started off flare free!

Some things we do to prevent a flare at school:

I made sure that Candice is aware of her known triggers and of possible ones so that she knows what to avoid.  She is very knowledgable regarding this.  Also the teachers are all aware that when Candice says she needs to go to the nurse they are to send her to the nurse at that moment. She usually feels a flare up coming on and can get to the nurse for more preventative measures to be taken or for her rescue medications before the flare gets to the major point.

When it is too hot for Candice to be outside or active because heat and humidity are major triggers for her she does not participate in outdoor activities such as recess and P.E.  Instead she will go with another class to Art or Music.  This way she is not just sitting out and not participating and feeling left out.  She really enjoys this.  She has a cool vest that helps her to be able to participate in outdoor activities most of the time.  Her cooling cloths are a huge help as well. Here in Houston, TX it tends to get really hot and humid so there are some days where the vest doesn't help out enough because the heat and humidity is so high and it's good to know that we have set up alternatives for her to be able to participate in school in another way.

She goes to the school nurse a few minutes before P.E. and recess so that she can get her cool vest on and goes to the nurse afterwards so that the nurse can put her packs back into the freezer for later use.

At all times she carries her cool mist fan, thermos full of ice water, cooling cloth etc as preventatives for a reaction.

I make her lunch for her every day.  She never buys lunch at school as they cannot guarantee that the food hasn't come in contact with a food on her trigger list.  Also if another child has a food in their lunch with a trigger food for her she is allowed to change seats in the cafeteria so that it doesn't come in contact with her.  This has happened a few times even though measures have been taken to try to prevent it.

After school Candice goes to the office and when I drive up in the pick up line, with the other parents, the office is called over a CB Radio to send Candice out to meet me at my car.  This works out great so that Candice isn't triggered by hot, humid or even cold weather.

I provided an emergency medical binder that is full of information regarding Candice and mastocytosis as well as all doctor letters and notes for the school to have on hand at all times.  I also have a copy for myself at home for use with any doctor or emergency room visits.