12 year old son has anaphylactic shock twice now... negative to tests...Please Help!!
This all started on my sons 12th birthday. I took him and his friends for Sushi, then they came back, had some cake and played video games. Two hours later my son starts to complain he feels itchy. His cheeks are red and swollen, then his upper chest. I gave him some Benadryl and had him take a bath and it went away. Then nothing....for two months.
His school calls his mom (we are separated), my son had collapsed at school and was being rushed to the ER. The school is 40 minutes away from any hospital. A series of bad communication, the ER doctor was told he was going to the bathroom and he simply passed out. ER doctor passed it off.
Over the next month and a half the school called his mom on two more occasions saying that my son was in the office. He had a red rash on his face and body and felt itchy. By the time she got there she noticed nothing and he was sent home.
A month and a half ago my son started living with me now. Everything was fine for the first week. He went to his moms one weekend and came back with a bad head cold.
A week after the head cold was gone my son and I had dinner. It consisted of spaghetti, meatballs, and a small piece of cake. Three hours later my son says to me he is having that stomach cramping feeling he always gets before he gets itchy or something happens. Within minutes his face is red and swollen, nose is larger, he cant move his legs, and I am on the phone with 911. He is barely responsive to anything I say. He is rushed to the ER, where I observe his whole body looks like it is sunburned. The ER doctor says right away he has a food allergy. That is when his mom tells me that the principal at his old school observed the same exact thing. I knew something was more wrong now.
I have him tested right away for food allergies by blood and all test results come back negative. I cut back everything to the simplest forms, gluten free, soy free, no sweets diet.
A week later, three hours after having dinner of just chicken and rice my son complains about his stomach cramping. Within minutes again his face turns red and he is itchy. A quick shot of Benadryl and it goes away.
I start to switch him over from Medical to Kasier since he is living with me, but did not want to wait. I found an Allergist who then ran a serum tryptase test and full blood work. The only things that came up a bit low was....
Hemoglobin 13.9L 14.0 to 18.0 is normal
Hematocrit 40.6L 42.0 to 52.0
Creatinine 0.6L 0.7-1.5
His Antinuclear antibodies is <7.5 or not detected.
The Allergist has no idea but starts him on once a day Zyrtec and says this should help protect him. He then wants to run the Carcinoid Syndrome blood test.
A couple of days pass by and while at school he again gets itchy and red. This time though all he had to eat that day was a bowl of cereal, the same cereal he has eaten for two years.
I have now taken him to the Kaiser Allergy department. They want to run the skin scratch test and the same exact tests the allergist is running. (I am awaiting the result of the Carcinoid test). He tells me to have him stop taking any antihistamine medicines for ten days so they can do the scratch test and gives me a prescription for more Epi-pens. Now he has a bad head cold again and is complaining about migraines.
I have many questions of course. Has anyone heard of this as both allergists have already said they don't think it is a food allergy? I had him stop taking the Zyrtec, but if he is on it will it help protect him? If it is this Carcinoid syndrome doesn't an Epi-pen do more harm then good? Last, the anaphylactic shock my son has gone into twice, could this be something else? The Kaiser doctor has said he has never heard of anyone not being able to move their legs but still awake during one.