D & A- EXPLAINED

It has come to my attention that I should clarify a few things...
***D*** is our oldest daughter, she just turned 5 years old and will enter kindergarten in the fall. She's a Girly girl & so smart! (I'm not just saying that either, the kid spoke full sentences at 12 months old!). D loves the color pink, kidz bop songs, barbies & digging in the dirt. When she grows up she wants to be nothing less than a "stage star!". D is our child with the sun allergy. And although we've always known something may be wrong with her we never knew, until late, what was wrong. (okay thats not entirely true, remember that denial is a powerful thing and that sometimes we only hear what we want too) Now, if nothing else, we know... She is an awesome vibrant child!

***A*** is our youngest daughter, she is almost 3 years old. A is a little wild child and an angel baby all wrapped up in one mighty Package! Her hazel eyes and toothy grin warms everyone's heart! Like her big sister she too is very intelligent!  At five months old A was diagnosed with Mastocytosis.  Initially we were devastated by her diagnosis but have since learned to live with it.  She takes daily antihistamines and has to have an epi pen near her at all times.  Children with Mastocytosis have too many mast cells in their bodies. Mast cells release histamine and causes itching, diarrhea, vomiting, flushing, and in severe cases can lower blood pressure.  Some mast cell reactions can be life threatening.  For A we have to avoid any insect in the hymenoptra classification (bees, wasps, fire ants) these are known to cause anaphylaxis for her.  Heat is another thing we have to avoid because heat triggers her mast cells to release histamine and then we have an itchy, sick child.  So A wears a cooling vest outside in temps over 77 degrees.  Her disease is far more complex than I can explain and I don't know how it is that I understand it but cannot explain it, but thats how it is for me.  In the past ten months she has had two hospitalizations, multiple er visits and at least 3 dozen office visits... Aug 22, 2011 will mark one year OUT of the Hospital for A!!!  Fingers crossed that we get to celebrate that victory!  I should also mention that ppl with masto sometimes have spotted skin, A does, and that there is NO known cure

you cAN LEARN MORE ABOUT MASTO AT WWW.MASTOKIDS.ORg or www.tmsforacuRE.ORG  (A IS PLAYING WITH THE caps lock button...)

Stages of Mourning

I've always found it interesting how differently people cope with death and loss, and now I find myself doing just that.  I am trying to cope with a huge loss of normalcy and to regain some footing in this new and scary world.  Yesterday it was confirmed that our oldest daughter has PMLE (Polymorphic light eruption- sun allergy).  Yes, sun allergy... so now we have to learn how to keep her healthy and still allow her to be a child and have a childhood.  Two very complicated tasks that seem to be mutually exclusive.  Though technically no one is dead, or even going to die, I am definitely struggling with the diagnosis.  Just when we got a handle on things with our youngest rare medical condition this happens.  There is just no simple way about it.

Stage 1: Denial and Isolation- about three weeks ago we were told she probably had PMLE but that it could have also been a number of other things and so we were hopeful (in denial).  I knew deep in my gut that it was PMLE causing her to have a horrible red itchy rash, but I completely tried to believe it could be something else.  Isolation is something I cant handle since by nature I'm a fairly social person.  And how do you explain to people that you have two children with unrelated conditions but that both conditions leave them unable to play outside in the heat and sun?  Its just not so simple and people can be so cruel.  It is my experience that when initially faced with these challenges it is best to withdraw.

Stage 2: Anger- I'm down right pissed off about all of this and I don't even know if I have the right to be.  It's the hardest thing right now.  I want my children to just be normal and run around in a sprinkler without all kinds of preventive measures taking place before hand.  I want my oldest child to be able to wear her favorite dress and ride her bike.  I don't want them to have to listen to their mom helplessly try to answer strangers stupid questions or have to deal with the stares.  So yes, Im angry... I guess this is where Im at right now.  I think I am somewhat quickly progressing while other family members and still in denial and this is all the more frustrating!

Stage 3: Bargaining... I hope to skip this step as there is nothing I can do to change this

Stage 4: Depression- sometimes all we really need is a hug... but I'm not a hugger so please don't touch me

Stage 5: Acceptance- I know I can learn to accept this for what it is.  I can accept the fact that A has mastocytosis than surely I can make sense of this PMLE too...

You may be wondering what is PMLE so here is a simple explanation with NO medical jargon.  PMLE is a sun allergy, not a sunburn.  The immune system is activated to attack itself when exposed to UVA or UVB rays and in some people both rays cause the reaction.  The exposure does not have to be long or be direct sunlight for this reaction to occur within the body.  The reaction starts immediately but does not show up on the skin for usually one to two hours after sun exposure.  The rash can be hives, small red patches, or red itchy areas that cover most or all of the sun exposed area... in more severe cases it can appear even under clothing.  D is somewhere between moderate to severe, as she does have the rash on non exposed areas.  It can be managed by using physician strength sunblock, UPF clothing AND limiting sun exposure.  The rash is intensely itchy and once it appears it can take days to a week or more to resolve.