unexplained tounge, lip and facial swelling...

[hammer62]

I have a almost 18 year old daughter that has been experiencing periodic swelling of her tounge, lips and face.  Her tounge gets so large that she cannot speak properly.  She also has numbness and or tingling in her fingers.  We have gone to several doctors, they say she has idiopathic angioedema.  One time she even had a problem with her breathing, she was at school and the nurse had to administer the epi-pen.  She got immediate relief and was taked by ambulance to the hospital.  The doctors now say she is also idiopathic anaphlactic(sp?).  Any way she has been put on a number of meds, steriods, zantac, hydroxine... She was having 2-3reactions a week back in Jan.  She was on major doses of prednisone and went as long as 7 weeks without a reaction and now they have started back about once a week for the past 3 weeks.  she is currently taking 15 milligrams of prednisone along with the zantac and hydroxine 4x's a day.  The medicine is making her crazy... she says she feels depressed and is having scary thoughts.  We have had all sorts of blood tests taken and everythng seems normal.  We have been told that there are no tests available to see if she has some environmental allergy.  I feel like the doctors do not know so they are calling it idiopathic whatever and pumping in the meds rather than really finding out the cause.  I would appreciate any help, we are so frustrated.

[Jenwb]

My husband has recently been experiencing the same symptoms.  His goes from limb to limb to face, seems like a different body part is effected each day.  Any luck finding a reason??

[DoreenL]

OMG!  I finally found  someone who has the same symptoms as me! I have had facial, tounge, lip and even finger, toes, knees, eyes....swelling for just over 3 years now. I am 52 years old and no one has a clue why this happens to me! It's very frequent now. Seems I live on Benedryl and Pepcid. HELP!!!  Why is this happening????

Frustrated!!

[Dr_Subir]

Consult your physician and ask him about C1 esterase inhibitor. Thats a definite cure for hereditary angioedema.