Does this Sound Right to You?

[Shelsi]

We've long suspected that ds (16 mos) had a sensitivity to nuts. When I was bfing him whenever I ate anything with nuts he would get very spti-upy and extremely fussy for hours...as soon as I realized the connection and stopped eating them he was fine.

So anyways our ped finally gave me a referral to an allergist to have him tested. The doc did a blood test on him. He finally called us with the results and said that on a scale of 0 to 6 (with 6 being the highest level of allergy) that Jake was a 5 with regards to pistachios. He said he had a severe allergy and we shouldn't even have pistachio dust in our house. All his other tests turned up negative. However the doc said that he thought they may be false negatives...he said if ds has never had any exposure to them then he may not have the antibodies yet to detect on the blood test. Ok that makes sense. Well anyways the doc said they were waiting on one more test which was for sunflower seeds and he would call us back.

I assumed when that test came out he would call us back and have us come into the office so he could explain everything and how to keep Jake nut free. I also thought that since he is so allergic we may get an epi-pen. However today the doc called while I was gone and just left a message. All he said was that the test turned up negative for sunflower seeds and to keep Jake away from nuts. That was it. No follow up appointment, no mention of an epi-pen, no nothing! Is that normal?!?!?

I'm so annoyed because we don't get a choice of a referral...they just send us the name of the doctor that we must go see so I didn't get to make a choice. This just seems odd to me though. Plus I read through research on the internet that if a person is allergic to one tree nut like the pistachio than you should stay away from all tree nuts. Is it totally weird that the doc is not going to talk to us about this at all? He didn't tell us what to do if Jake does ingest some; he didn't tell us if he would grow out of it; if he should be tested again at all...etc. I am so confused

[Missy]

Unfortunately, I don't think it's that uncommon for many allergists to test, give results...and expect you to know exactly what to do from there. I think they're so embedded in the world of allergies that many forget that the rest of us aren't used to it. I would definitely call back to schedule a follow-up; you need an epi-jr like maybe yesterday. But, they can call that in to a pharmacy. Or your ped. can call it in. It's nice if someone can take the time to explain it to you, but, really, you need to get a 'script for a double pen which comes with a trainer and very clear directions (we practiced until we felt comfortable). It's important to always carry both because another injection might be needed within about 20 minutes. With any nut allergy, it's safest to assume an allergy to all nuts, to peanuts, and possibly to seeds because there are common proteins. Some are more closely related than others. Pistachios are related to cashews and poison ivy. Your best bet is to 1. call for an epi ASAP, 2. schedule a follow-up, 3. start researching everything so that 4. you can ask the right questions at the follow-up (it's better to go into an appt. with some knowledge so that you can direct the discussion to cover the areas about which you're most concerned instead of depending on the dr. to automatically cover those areas--like I said, they're sometimes oblivious).

You're doing a great job!! Allergies can be so overwhelming!