I was led to a great, informational site about anaphylaxis via a post on Inspire and I wanted to share it with you. For those dealing with MCAS (mast cell activation syndrome), which is so common in EDS, it is a great resource and I am going to be using it as an addition to the info I have found on the Mastocytosis Society page. The site is called Idiopathic Anaphylaxis Information Center and focuses on Idiopathic Anaphylaxis as well as mast cell disease.
The link that was initially shared took me to an article about anaphylaxis, which I found very enlightening. In particular, the chart describing the grades of anaphylaxis on page 7 was particularly helpful. It might change your thinking about what exactly anaphylaxis is…
According to this chart, my daughter has been dealing with Grade 2 (out of 4) anaphylaxis on a regular basis, to which I say:
HA! I knew it! (while spiking the football and doing a spectacular end zone dance)
I had been told that her flushing was nothing to be concerned about and the tachycardia/ near syncope could be anything and the GI pain was normal with EDS, but I was 100% sure that was she was experiencing was mild (so far) anaphylaxis. I knew it was anaphylaxis and this article validated my conclusions. The fact that she responded almost immediately to H1/H2 antihistamines was a big red flag that what she was experiencing was, in fact, anaphylaxis. Unfortunately, I am the only who really sees that red flag for what it is.
Now, since she went on the Zyrtec (H1 blocker)and Zantac (H2 blocker) combo she was experiencing these anaphylaxis symptoms much less frequently – instead of a couple time a day, she was down to just a couple times a week. Unfortunately, since her surgery, she is back to reacting to everything. Which is another red flag because surgery is a known mast cell trigger. Most of her reactions currently are GI in nature and, recently, she has been having more skin reactions but, interestingly, no visible flushing. Fortunately, she rarely goes into breathing difficulties and when she does, a dose of Benedryl usually does the trick. After reading this article, I am even more glad we have an EpiPen on hand – just in case. (I knew she needed an EpiPen, which is why I asked for one for her latex allergy – I just felt we needed it on hand.)
Of course, while I do enjoy being right, having this opinion validated really doesn’t make me feel better. Knowing that it really is anaphylaxis is pretty scary and just one more thing to worry about. But, like I said, this is not news to me and simply is confirming what I already knew. Now we just have to get to a mast cell specialist and try to get this figured out! Easier said than done, I think…