If you have ever read my “about” page, you will know that I mentioned that I would sometimes use this blog to vent. There are many struggles a food allergy parent faces, and one of them happens to involve other newly diagnosed food allergy children and their families. Well, actually, I should clarify that I mean the allergist or other doctors that they have seen are the problem.
This frustration comes a little deeper because I remember too well being in these “new” parents’ shoes. I remember leaving the hospital, then the pediatrician’s office, then the allergist’s office and feeling completely overwhelmed.
I remember, clearly, the visit to the ER that first day. The ER doctor was very nice, but this is all he told me.
“Food allergies can be life-threatening, and in the case of your son, he almost lost his life today after that peanut butter taste. You need to carry these Epi-Pens because they are the only thing that could save his life if this happened again. Next, you should see your doctor for more information. There are also some websites, I think one is www.foodallergy.org to learn more. Be careful, because peanuts show up in the most unexpected places. There are candies out there that you would never think peanut could be involved in. Good Luck!”
No, I was not shown how to use the Epi’s, I was not told why I should have two with my son at all times. No, I was not told that I should use them even in the event that I am not sure he is having a reaction, but maybe he is, that it is better to ere on the side of caution. (I was guessing I should wait to see what happens, which now we know that waiting could cost him his life!) I was not told what all the signs are of a reaction. All I had to go by was what I witnessed that morning- hives around his mouth first, followed by wheezing in his chest, and once in the ambulance, hives and eczema all over his body! Of course, there is a list of possible signs of a food allergy reaction.
The next step was to the pediatrician. I have to state here that I love everything about our pediatrician except the knowledge of food allergies. It was a doctor in the practice who, at his 1 year check up, gave me the instructions to feed him the “fattening foods” to help him gain wait. These were specifically eggs, and peanut butter (among other things.) Later I learned that the doctor’s who specialize in food allergies specifically say DO NOT FEED ANY CHILD PEANUT BUTTER BEFORE AGE 3- ESPECIALLY IF THEY HAVE ANY OF THE RISK FACTORS –family history of allergies (any kind, it does not have to be food allergies in particular), or The child has eczema. In our case, I, his mother, grew up with and still deal with A LOT of allergies! Sadly, my son has really bad eczema that started at only one month of age! This doctor should never have given me the okay to feed him peanut butter! The other problem with the ped office, in regards to our food allergy visit, was that I was not given any more information than the ER gave me except for more websites to search. I was pretty much left alone to figure this out.
So, off to the allergy doctor. I had scheduled this appointment to have him officially tested to get a baseline for his food allergy and to see if there were any others. We learned at this appointment that he is indeed allergic to peanuts, in addition there are tree-nuts and eggs. I believe I was asked if I had Epi-Pens and if I knew how to use them- and that was it! Off to home I went.
About a week later, I realized that I was still feeling in the dark. I can’t really explain it. I guess it was a mother’s instinct or the fact that I was reading on the Internet all about food allergies. I ended up scheduling another food allergy appointment with a different allergist for more testing on the rest of the top 8(that I learned about via Internet, not from a doctor!) I was happy to learn that we were still only left with the three that he was originally tested for. The only other new thing I learned that day was that I now had to check all food labels. That is right, I was not explained this in the first place, it was about a week or so later at this second allergy visit! I was handed three laminated cards with about 30 to 50 words written on each. I was told to read all food labels and make sure none of these words were listed in the ingredients. HOLY COW! Talk about overwhelming! Have you ever tried to read a food label in the first place? Talk about a bunch of mumble jumble. (Thanks to the new labeling law, the top 8 food allergens now have to be listed in plain English, thank you.)
So, in a nutshell, this is where I was left. I slowly started to adjust our life around this food allergy situation. I read tons of articles on-line about food allergies. Some of these websites proved helpful, and I have listed them on my sidebar for easy access. I eventually contacted our local food allergy support group FAAST and was given a wealth of information. Cindy Moseley, the leader, called me personally on the phone to let me know they received my information through the website. She told me how important it was to carry two Epi-Pens at all times (one could malfunction, or it could take too long for emergency services to arrive. The medicine could wear off in 15 -20 minutes.) She told me about Medic Alert and suggested I look into it for a bracelet for my son. She even told me of a great cookbook that I could get to bake with out eggs! I seriously think I was on the phone with her for about an hour. It was the most support I had felt through the process at this point.
Through the years of spending my time being proactive reading and attending the FAAST meetings, I have learned a lot of information.
Back to what kills me!
Just about every time I meet a new food allergy parent, they seem to be so “green” in this area. I was just talking to a friend yesterday who learned only weeks ago that her 18 month old is anaphylactic to peanuts. She was fed peanut butter and almost lost her life. It took 2 doses of meds at the ER to stop her reaction! Yes, when I asked about Epi- Pens, they have them, and they were shown how to use them. BUT, I still don’t think they understand how serious the situation is! I think the biggest thing that stuck out to me was that my friend told me she wishes she knew how serious her child’s food allergy to peanut butter really is. I quickly explained to her that, “Hey, she had anaphylactic reaction! It doesn’t get more serious than that! You know she could lose her life if she ingests anymore peanut. Peanut allergies are so unpredictable. You don’t know if the next reaction will be just like the first one.” I told her, too, that each exposure could result in stronger reactions. She said her husband wanted to give the child a taste at home to see what would happen! Of course, I reminded myself that it isn’t their fault. I BLAME THE DOCTORS! They should have been explained details of the food allergy during their visit with the doctor! Don’t these doctors realize that the parents are only going to follow their lead? So, now I have the job, as a worried mom (that is how I am most looked at, I am sure) to explain all of this to her. I urged her NOT to do any kind of food challenge at home. I told her that children can die within minutes of an exposure. She then said they were thinking about wiping some peanut butter on her skin to see what would happen. UGH!
Has anyone else had an experience like this one? This is sadly not the first parent I have met who was not educated thoroughly about peanut allergy. I am so worried, and I don’t know what to do. I realize that outside of sharing my knowledge, there isn’t much I can do.