Hi Liz,
I'm sure this is very scary for Nina and everyone around her! Do you know about the website Mastokids.org? It addresses specific problems of children with mast cell disorders, because they can present differently in children and adults.
If I'm reading correctly what you wrote, she's had 4 triggers for anaphylaxis: food and/or food additives, stress, exercise, and a scented/chemical oil product. While you mentioned allergens, it didn't sound as though inhaled allergens triggered the big episodes. Then, she's had episodes that wake her up in the night from an unknown trigger.
Most of this might be explained by a combination of allergies and asthma, even the stress-induced events, as asthmatics are affected by stress. A couple of things make me wonder if she should be tested to rule in or out a mast cell disorder and other problems that have similar symptoms. A history of Lyme disease may or may not be relevant. There isn't a proven connection, but some people feel they've developed mast cell disorders after having viral or bacterial infections.
You said her tryptase was high at the ER. That wouldn't necessarily mean a mast cell disorder, as tryptase can be high after any anaphylactic reaction. If her baseline tryptase is high, when she's not reacting, then a mast cell disorder might be suspected.
Still, that's not the only testing that should be done to determine what's causing her problems. There are some things that mimic mast cell diseases that would need to be ruled out first.
If it were my child, I'd read a lot here and at MastoKids and post her history there. Then, I'd ask my allergist to contact Dr. Castells at Brigham and Womens in Boston and ask what testing to do to rule mast cell disorders in or out, or I'd make an appointment to see Dr. Castells. If you're on the other end of the U.S., you might consider contacting or visiting National Jewish Medical Center in Denver. They do diagnose mast cell and other allergic and immunological diseases, and can rule in or out diseases that might mimic a MC disease. MastoKids might have some suggestions for doctors, too.
In the meantime, you might want to see if you can pin down more of her specific triggers. This can be done with an elimination diet. Your allergist would be able to help you find a good one. Although she didn't test allergic to foods, they can still trigger symptoms. As you may know, there's a significant difference between a true allergen and substances that causes mast cells to degranulate. (We call them "triggers.")
Food reactions can be due to an allergy, intolerance, or a substance in the food, e.g., histamine. There's a low histamine diet listed at:
www.urticaria.thunderworksinc.com/pages/lowhistamine.htm If you haven't already, you might want to take away any pre-prepared foods and make everything from scratch for a while so you know exactly what she's eating. Food reactions can occur up to 72 hours after a food is eaten.
We have a "bucket" analogy that we use regarding symptom "triggers." If a bucket already is full of water, one more drop can cause it to overflow. If we are exposed to triggers all day long, one tiny exposure can cause our trigger bucket to overflow and cause symptoms.
Most of us use preventative meds as our primary means to keep our symptoms under control. These vary by individual and might include H1 and H2 antihistamines, mast cell stabilizers, leukotriene inhibitors, and others. You might want to talk with your allergist about putting her on daily antihistamines or other daily meds, to see if it keeps her reactions down.
Good luck in figuring this out for your daughter! If you have any more specific questions, do post again.
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