Momof4, please wait for another answer from some of our more educated people on this forum. I only want to share my thoughts with you but often others who have done deeper research into mast cells and problems may come along after me and offer you some great advice.

With that said, I have two thoughts to share (if my brain fog will stay at bay long enough for me to clearly express them)  
There has been discussion's on this forum about the 'burning mouth' symptoms. One of the respected Mast Cell researchers actual wrote a paper on this. (I'm still trying to get my hands on that paper). My personal experience with that symptom is more of a tongue issue. My tongue gets very sore. If you take an LED flashlight and actually examine my tongue, looking past the white coating I can see the red taste bud thingy's are enlarged and very red anywhere from the tip of the tonge to the sides and back. Sometimes I get little white sores (similar to a fever blister or canker type appearance) and those are even more uncomfortable. Over all my tongue will feel tender and sore.

My second thought, and of course we are all different and react in many different ways, when I experience a near anaphylactic episode my lips and face tingle but I also at that point have many other symptoms such as shortness of breath, flushing, light headed, naucious, sometimes diarrhea, blood pressure fluctuations, etc.

In either case, again this is just my personal experience, I am beginning to consider that the reaction from my tongue is probably my body telling me that the things I'm ingesting may not be agreeing with me and therefore causing this reaction with my tongue. I added my face and lip tingling experience only because you used the word 'tingling' to describe her symptom. I shared my tongue soreness because this is the location of her symptom. My experience between the face, lip tingling and sore tongue do not occur at the same times. They are separate experiences.

If I were to take a "GUESS" I would say that her tongue symptom is probably a reaction to something ingested that she is sensitive to. I looked up the Piriton syrup since I wasn't familiar with it. If I understood what I read correctly, I see that it's an antihistamine used for children however I'm not sure if it's considered as a H1 blocker or not. But given that when she takes this her tongue tingling is reduced, I would lean more towards the idea that she is reacting to something with her tongue being the place she shows symptoms.

Please keep in mind that I am ONLY sharing my thoughts. I'm not in the medical field whatsoever and there are others on this site that have researched in much more depth then I and have helped many, many people so they may have better advice to give. I just wanted to share my thoughts.

My thoughts and heart are with you. I know this disease is a tough one to deal with as an adult, I just can't imagine one of my children (I am also a mother of 4 but they are all over the age of 18 now) having to go through this.
Keep checking back here to see if someone else can offer you any suggestions! Good luck!

Kim

Hi Mom!  sorry to hear your daughter is going through this, but with you on the ball, she´s in good hands!!  The more you can research and teach her, the better!!

What kind of workup has your girl been through?   Have you been to see any masto specialists?   Give us a bit more information, perhaps we can help.   Where do you live, by the way?

As to the tongue tingling, this is typical of the angioedema that can go on with an anaphylactic attack with some.  That tingling is because the tissues are changing and swelling.   It´s a danger sign and needs to be taken seriously for this kind of reaction is what swells shut the throat.  I don´t get any of this, but it doesn´t mean that we´re not going through the very same processes of anaphylaxis.  

So, yes, you´ve done right to give her benedryl when she´s talking about the tongue swelling.  

begin taking notes as to when this happens and what might have been the trigger - foods, heat, cold, physicial activity, etc.  This will help you learn the triggers to avoid them.  

I get the feeling, however, that your daughter is undermedicated.  So this is important that you find more answers for she needs doctors who can figure this out better and puther on the right meds.

Lisa