Just got a frustrating call from the pedi...
ohioroots
member
So I called them this morning to set up an appointment for me to have a good talk about Sasha's food options. I feel really limited and I want to make sure she is getting the nutrients she needs without me doing her any harm. The appointment desk said she needed to get me in touch with the on-call nurse and the nurse would better be able to determine who I needed to talk to and for how long of a time.
The nurse called me back...before I could even ask her my questions she said, "so looking at the report from the allergist, it looks like she's positive for wheat, oat, soy, egg, peanut, corn and dairy." I was completely shocked. The allergist specifically told me she was negative for everything, but skin tests at such a young age are inconclusive so we should retest her when she is one year old.
At her 9 month appointment the pedi said that looking at the report she was slightly positive for wheat and corn and that was it. I am so frustrated that nobody is properly communicating either with each other or me. One of the questions I was going to ask the pedi was that "I tried corn and so far she's had no reaction, so I guess that one's safe, right?" The nurse freaked and said I should "discontinue it immediately." "But she's had no reaction." "But she tested slightly positive."
I started crying. I feel so limited with what she can eat to begin with (I already knew she couldn't handle dairy, wheat or oats) that adding that many things to the list became so overwhelming. The poor nurse on the other end of the phone didn't know what to do. She said she's going to have a Dr. call me to discuss my concerns further and then she hung up.
Sorry this got so long. I just need some answers. I think part of me is mad because my family says "she'll probably grow out of it" when I try to talk about her issues. I can't live on the edge of hoping she'll grow out of it, I need to give her what she needs here and now.
Allergic to soy, oat, egg, peanuts, and tree nuts
Re: Just got a frustrating call from the pedi...
are you seeing a pediatric allergist or just having your pedi run the allergy tests? If you aren't with an allergist- I'd get one asap and have him/her analyze the results of the test and give you some direction. The tests can have false positives and negatives. If the allergist will allow it- I'd ask for both skin and blood tests so that you can compare the results and decide with the dr. if a food challenge is appropriate.
For where you are now- if you haven't seen a reaction with corn (no skin issues, no tummy issues etc), and the numbers only indicate a possible slight allergy- I wouldn't pull it. Not having a reaction is a prettty clear indicator that she's doing ok with it.
We had a pediatric allergist do the skin tests and he sent the results over to the regular pedi. The allergist is the one who told me in the office that DD tested negative for everything. The allergist wants to wait until she's closer to one year to retest her, and I will be requesting a blood test at that time, we only did skin testing when she was 6 months old.
Allergic to soy, oat, egg, peanuts, and tree nuts
I second a pediatric nutritionist. It was a HUGE help for me and you should totally go.
Also, next time request a copy of the results.. this way you can see all the levels of her RAST test yourself.
All i can tell you is that it will get easier. You will find a group of foods she can have and you will stick to them. It's just finding that group of food.
Try this place for some product searches
There is no option to choose for oats, but after you select everything she's allergic to, except for oats, you can select the product and below it will say what it does not have and all the ones i clicked on it said "no oats"
I think this has no wheat, oat, soy, egg, peanut, corn and dairy - https://www.allergygrocer.com/allerenergy-nutrition-bar-apple-cinnamon-from-ags-foods.html You may need to wait until she's one to give it to her. But it's an option for a snack.
They also have a lot of mixtures.
I'm so sorry you're dealing with it. I would totally ask for results so you can look at them yourself also. You can just hope she will outgrow it, like all of us, but we are living in the NOW (and that's what i tell my family when they dismiss everything and causally say oh, he'll outgrow it.. i'm in the NOW and NOW he's allergic to ABC).
Good luck and hugs