Don't think my allergist is very good!!!

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The more I read the more frustrated I become. I knew from the beginning I didn't like my son's allergist, but now I'm beginning to think he's just incompetent. My son had a pretty severe allergic reaction to something right before Christmas; we weren't sure what it was so we were referred to an allergist for testing. He has only done skin tests and has not been very good at passing along information. My husband took my son to his first appointment were he was tested for "everything" and came up positive to whole milk. That one was surprising because the boy had had milk since he was one year old (was about 22 mo. at the time of the test) with no reaction. The allergist said it may be a false positive and could be retested. He also said that he wanted to do a food challenge on peanut butter and did not do any kind of test on that. I took him to the food challenge and he did not get past the skin prick test. He welted up on both peanut butter and some other solution they tested him on. I was given little information other than he was allergic to peanuts and to stay away from them. I mentioned the milk test and they said we could do a food challenge and that was it. Well, needless to say after reading some of the information on this board I realize that I was given no information and the allergist really did substandard testing. Not knowing any better I didn't even know I could ask for a blood test. My husband goes to a different allergist that he really likes. We are going to see if she sees children and try to take my son there. I'm pretty sure that he is indeed allergic to peanuts and we now live in a nut-free home... but I have no information on the degree of the allergy or if that was indeed what he had the reaction too. When you throw the whole milk thing in the loop it's just confusing. I am frustrated and upset and just needed to vent. My son is now almost two and I don't even want to take him out of the house until I get some answers.

By scmom24 on Mar 2, 2009

The problem is that he didn't eat any one thing right before the reaction showed. I had put him down for a nap at about 4:30 pm with his brother (they are twins) and went to pick up dinner. My mother in law was in town at the time and stayed with them, she didn't say there were any problems or that she took them out of their room. When I got home somewhere between 5:30 and 6:00 I went to get the boys up. When I saw Dillon I noticed his face and eyes looked kind of red. The boys get a little wild so I thought he may have hit his eye on the bed or something and didn't think much of it. I brought them downstairs and gave them dinner. I noticed he wasn't eating and my MIL said pointed out that he was scratching his face and eyes. At that point I called my husband to bring home benadryl(he was working). I thought maybe Dillon was reacting to my MIL's perfume or something (he has very sensitive skin) so I gave him a bath. He seemed ok at that point but still wouldn't eat so I gave him to my MIL and he had a bottle. I went to give my other son a bath and by the time I came back down stairs Dillon's eyes were extreamly swollen and he had a hivey rash all over his face and parts of his arms. I called my husband and told him I was heading to the emergency room. He vomitted once on the way. Once we got there they gave him a steroid and epinephrine... plus benadryl (and I think a bunch of other stuff they didn't tell me about). His reaction didn't decline as they hoped so we were transfered to the children's hospital down town where we spent the night. After about 2:30 in the morning his symptoms cleared and he hasn't had a problem since. The thing is, I'm not sure the trigger. I thought maybe it was chicken nuggets that I gave him for lunch (I don't remember giving him Wendy's chicken nuggets before).... but that didn't make since because his reaction showed so much later. Then my MIL told me that right before nap time she had given both of the boys a half of a christmas cookie. That's when a red flag went up. I had gotten christmas cookies from several co-workers and didn't know what was in them. I would have never given either of them one but never told my MIL not to. She said she gave them a chocolate chip cookie and the only ones we had were packaged in a gift bag with peanut butter cookies. That's why we wanted the peanut test. I'm pretty sure that's what the reaction is to which is why I take the allergy so seriously.... but not knowing is hard. I'm just having a hard time reading all of this information from other people with allergy results and blood levels and 4+ severity to this and so and so level on that test. Mean while my son was pricked with two things and I was told he was allergic and sent on my way with little information. You would think with an allergy as seriouse as peanuts the dr. would have told me more. Now I am just leaning on the side of total peanut and nut free life. I don't have either in my house... I read the label on everything. If kids come over to play they wash their hands before entering the main living area. My other children do not eat peanuts or nuts in general now, and if they do they have to wash hands and mouth before they can go into the main living area. Some times I think I'm going over board.... but I would rather be safe than sorry. Oh, and we do have two epi pens... though my dr. never told us that the second was a backup. We thought it was one for home and one for the diaper bag. Now we need to get more. I'm at my wits end.

By lakeswimr2 on Mar 2, 2009

What was your son eating when he had the reaction at Christmas? What was the reaction? Can you describe it in detail? How soon did it happen after he ate?

I'm just going to reply assuming the reaction at Christmas time *was* an IgE mediated serious reaction to food. Since I don't know what the reaction was it is possible it wasn't a food allergy.

Assuming it was...

Skin and blood tests are about equally accurate, with skin probably being slightly more accurate. Both have about a 50% false positive rate and about 90% false negative rate meaning that testing alone isn't a good way to diagnose a food allergy. If your child had milk *after* the Christmas reaction and was fine it is unlikely the positive milk result is accurate. I would absolutely want at least an in office food challenge for milk to make your you aren't avoiding it unnecessarily.

Your child reacted to *something*. You know it is possible that peanuts caused the reaction. I would, for now, assume that it is likely your child could react to peanuts and avoid them totally. If you are avoiding peanuts you should also avoid tree nuts since most are processed on the same equipment with peanuts. I see your problem that since you don't know for sure if it was peanuts caused the reaction or something else you are afraid your child might have a reaction to something else. That's unfortunately true. You are right that a good allergist would give you more support and info than this.

At the least you need to have 'how to read a label' cards for both peanuts and tree nuts and also an emergency plan and epi pens. Do you have an emergency plan and epi pens? I would also want an in office challenge for milk (and I would guess your child would pass the milk challenge but it is possible your child suddenly became allergic to milk.) And if you can bring in all the things that your child ate before the reaction in December your allergist should be able to skin test your child to those exact foods. That might help you figure out what caused the reaction.

You might also want to check out www.kidswithfoodallergies.org and www.faan.org . Both are really good resources. You can buy books and info from FAAN and kids with food allergies has links to recommended (and very good) books you can buy on amazon. You can also call FAAN's 1800 line and talk with someone there and get some advice and support, which I'd do now if I were you. Very best wishes!

By scmom24 on Mar 3, 2009

Thank you for all of the great information. I do feel overwhelmed most of the time. Nuts are in everyting and it's hard to stay away from them.... but I will do whatever I have to as long as he's safe. I will look for some of those books, the more I learn the better I feel... most of the time.

By lakeswimr2 on Mar 2, 2009

Reactions start within 2 hours of ingesting the food. Most start within 30 minutes. The thing is, with babies they can't tell you if their mouths feel funny or if they are having other minor symptoms so it is possible that what you saw as the start of the reaction was not but I think most likely it sounds like the cookies caused the reaction. The top 9 most common food allergens are dairy, eggs, wheat, soy, fish, shellfish, peanuts, tree nuts (all nuts) and sesame. Being in the same bag with peanut cookies could certainly leave enough peanut residue to cause a reaction. If your child had been eating all the other top 9 just fine (or if some weren't in the cookies ;) ) then I'd think it was whichever thing your child hadn't yet eaten as the most-likely cause. So, from what you said I'd be thinking this was most-likely from peanuts and I'd totally avoid peanuts and tree nuts.

There is no way to tell from test results alone what future reactions will be. Test results do not correlate to the seriousness of future reactions. If you want to know what the test results were you should be able to contact the office and have that information sent to you or given to you via phone by the allergist.

Unfortunately there is *so* much information a person needs regarding food allergies and appointment times alloted by insurance companies are often not enough to cover it all. That's why joining FAAN and reading info and books is so important. I'd also encourage you again to think of joining kids with food allergies as well.

*Any* food allergy to any food can be life threatening. If your child was IgE mediated allergic to milk you should be every bit as serious about it as you would with peanuts. But peanuts are responsible for the majority of food allergy fatalities and peanuts are a super potent allergen that can cause reactions to super miniscule amounts of exposure. You do need to be very careful and totally avoid all nuts and peanuts.

Your precautions sound very good! I'm impressed and glad. :) Glad you have epi pens, too. You don't sound the least bit overboard. We do all that. We do not have our son's allergens in our house almost ever. We make the exception a few times a year of getting take out pizza and very, very rarely take out Chinese food for DH. Then we scrub the area and wash the dishes in the dishwasher and wash our hands. I would like our home to be a place our son can relax and not have to worry about touching something or eating the wrong thing. I would like to be able to relax in my own home, too, not worrying that *I* touched something and contaminated it, etc. Not having his allergens in our house works for us. There are others who do keep allergens in their home but because peanuts is such a super potent allergen many who deal with it do not have any peanut products (or nut products) in their house.

I like the following books in case you are looking for some.

Food Allergies for Dummies by Dr. Wood (very good--he has a peanut allergy himself.)

http://www.amazon.com/Food-Allergies-Dummies-Robert-Wood/dp/0470095849

How to Manage your Child's Life Threatening Food Allergies (will help you not feel like you are 'overboard'.)

http://www.amazon.com/Manage-Your-Childs-Life-Threatening-Allergies/dp/0970278519/ref=sr_1_3?ie=UTF8&s=books&qid=1236034616&sr=1-3

The Peanut Allergy Answer Book, 2nd edition

http://www.amazon.com/Peanut-Allergy-Answer-Book-2nd/dp/1592332331/ref=pd_sim_b_1

By lakeswimr2 on Mar 3, 2009

It takes time but it does get a lot easier. Hang in there!

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