Overheating

    Ethan overheats if it gets above 76 degrees F.  He turns bright red & gets fussy.  He can overheat if he runs a fever from illness as well.

Products:

    Misty Mate-- we love the misty mate mister & hope to be able to try some of their other products.  Ethan starts bouncing and grinning as soon as he sees this mister!

    Cooling Vest-- they do come in toddler sizes

    Cold Seat-- This freezes & is then put in the carseat to keep it cool.  This helps tremendously!

    Ice water in a sippy cup-- we let Ethan play with a sippy cup full of ice water in the car.

Susceptibility to Cold

    Transdermal water loss-- Ethan gets very cold in the winter & turns blue.  We keep him well-dressed & keep him where it is warm.  He had to sleep with us as an infant if we couldn't keep the house at 72 with him in a onesie, socks, sleeper, blanket sleeper, hat with several blankets

Products:

    Bench Warmer-- this is rechargeable & can be used to keep the carseat warm or the stroller.

****Note: Medicaid covered products for temperature control.  Here is the proposal letter I wrote for his products (they did not cover his diapers):

To Whom It May Concern:

            The following devices are necessary for ************ to have access to and function in his environment due to his congenital ichthyosis.  He is hypersensitive to temperature—both cold and hot.  He also is unable to perspire.  The devices that address temperature sensitivity are products that are needed for survival—hyper- and hypothermia are true concerns.

Additionally, his skin is so sensitive to the chemicals in disposable diapers that he develops serious lesions when he wears them, but he is unable to wear traditional, mass-marketed (standard) cloth because it is unable to wick moisture away from his skin sufficiently. 

All of these devices increase and improve Ethan’s functional capabilities.  They will help allow him to function in typical routines, activities, and settings.

-The Weeter Group Cold Car Seat Cover

            * When the weather is hot, it is difficult to even make a trip to the grocery store.  With this device, his carseat would remain cool.  We cannot have food or bathwater above 99 degrees or it burns him.  He overheats at ambient temperatures over 78.  It is impossible to keep the entire car that cool in the summer months, but this car seat cover would keep his seat cool enough where it will not burn his sensitive skin.

-Cooling Vest Size 3T/extra freezepacks

            *  Because Ethan cannot sweat, he overheats at any temperature over 78 (heat stroke occurs with overheating).  A cooling vest with freezable inserts will help him be able to venture outside.

-Misty Mate with fan

            *  In the carseat, Ethan will be unable to wear a cooling vest due to safety concerns.  The misty mate works by spraying out a fine mist of water.  This will help to cool him until the air conditioning cools the car off.

-Bench Warmer

            *  Ethan is unable to maintain his temperature in cold conditions because of increased transdermal water loss.  This would allow him to ride in his stroller outdoors, etc. when it is cold.  Many layers of clothing and blankets are not sufficient. 

-Swaddlebees All-in-ones diapers with snaps

            *  Disposable diapers cause skin lesions and allergic reaction, decreasing Ethan’s mobility and quality of life.  We have tried classic cloth diapers, but they are unable to wick moisture well enough to keep his skin in good shape either.  This is the only diaper we’ve found that works well with Ethan’s skin.  There is only 100% cotton next to his skin, no Velcro to damage it, and it wicks moisture well.  Using these diapers as an aid for daily living and personal care will promote and enhance function in his environment.

If you have additional questions or concerns, please contact **********