Epi-pen use & desensitization *UPDATE & Further Qs - Page 2

[lnitti]

Originally Posted by ChristaN

According to the RAST test, dd is not IgE allergic to anything (or has very minimal IgE responses to a few things, and none to others). The rubbing it on the skin isn't a bad idea. Maybe I can rub some cashew oil on her and see what happens rather than feeding it to her.

I would still be very careful even doing that.

Do you have any idea what her RAST values are? anything over 0.35 is positive (not sure if all RAST's use the same reference values). My dd was 5 for dairy and 7 point something for cashew, 92 for peanuts, and most definitely has reactions. She has never had cashew, but she most definitely has reactions to dairy. Almond was negative, but I think she does react to it. Almond was positive on the SPT. I've never seen a reaction to soy (hive, swelling, GI), but it came up as 1 point something and so we have been told she is allergic to it. Although it is possible it causes other milder reactions that I don't see and she is to young (2 1/2) to really tell me.

Sesame seed for us came up as 0.38. She was negative on the SPT and being so close to the threshold, our doc said she is probably not allergic to it.

If your dd is allergic to cashew, also watch out for mango. We did not test mango as he did not have it available for the SPT, and we had already done the RAST. Since she is allergic to cashew, he said to assume she is for mango too. He added that to her action plan for school.

[ChristaN]

So, in doing a little searching re false negatives on RAST tests, I came across some info from an Australian allergy assn that said that IgE #s in the blood aren't very sensitive b/c they are contingent upon recent exposure to the allergen. If you are allergic to bees, for instance, and haven't been stung for two years, your RAST IgE response to bee venom could be minimal or none.

We have done a pretty good job of avoiding those things that make dd's lips and mouth itch for years. Other than the one exposure to a small amount of walnuts about two months back which made her mouth itch and her lips swell, it has probably been years since we've had a reaction.

I left a msg for our ped &, when she calls back, I'm going to explain my concerns about food challenging her at home and not challenging her at all and thus having the epi scrip expire in a year. Perhaps she'll agree to let us challenge her in their office at least.

[ChristaN]

One other thought -- if we are going to try any of this out, how about sitting in the lobby of the ER while we are trying it?

[sbgrace]

I feel really badly for you that you're in this situation.
I'd ask the allergist to put in writing that your daughter can safely do an in home food challenge consuming cashew. Is anyone else in the family (say a grandparent) worried about it? If so you could say grandma is worried that trying cashew at home might be deadly and you'd like something in writing so grandma knows it is perfectly safe (it isn't...). I would imagine they aren't comfortable doing that in which case I'd demand an in office challenge or SPT since you can't get another epi pen without documentation and you can't safely try it at home. This is completely ridiculous (on their part) and I think what they are telling you to do puts her at risk (and them as well liability wise). How horrible. Do you have her RAST's? What were her numbers? My son was spt positive to six nuts (and sesame and a few fruits food wise). In RAST he was negative to one of those six tree nuts. It's the only one he hasn't had recent exposure to as it was the one spt positive nut that wasn't cross in any of our foods. You've still got sesame allergy possibility too and they can't really accurately test for that. Since cashew and sesame cross react she could have been reacting to that protein. I don't know.

[sbgrace]

Originally Posted by lnitti

Sesame seed for us came up as 0.38. She was negative on the SPT and being so close to the threshold, our doc said she is probably not allergic to it.

If your dd is allergic to cashew, also watch out for mango. We did not test mango as he did not have it available for the SPT, and we had already done the RAST. Since she is allergic to cashew, he said to assume she is for mango too. He added that to her action plan for school.

Mango does share a protein with sesame and cashew (and pistachio). My son is allergic to all those. I would think if a child is mango and cashew allergic they are also sesame and pistachio allergic. Also, sesame has serious issues with false negatives in both RAST and spt. You can't accurately test for sesame allergy. So I disagree with your allergist. I'd assume she's sesame allergic (and possibly anaphylactic) as well. She's just as likely to be sesame allergic as mango allergic and so it doesn't make sense to assume one and not the other.

[ChristaN]

I haven't gotten the RAST results in the mail yet. From what they told me over the phone, they are sending them to me as well as the dr's recommendations, which I was told would include exposing her to these foods at home. I, too, am waiting for this in writing.

I'll post back once I see what I get from them.

[ChristaN]

Funny enough it was in today's mail. Here's the text of what he said:

"IgE levels are reassuring, all less than .01 except cashew, but it is also low. Recommend: Oral itching could be oral allergy syndrome which would allow her to add to her diet. She may try a tiny amount of the foods not tried yet, and gradually increase. Cooking or baking might help. The lip swelling might not be due to walnut, but she should still be cautious. Epi pen should be immediately available and she should be ready to go to the ER if she is having a reaction. Also be aware, reactions can develop when she is older."

This was accompanied by an article on oral allergy syndrome.

The IgE levels were as follows:

Hazelnut <.10
Pea <.10
Peanut <.10
Soybean <.10
Walnut <.10
Almond <.10
Cashew .191
Pecan <.10
Pistachio <.35
Lentil <.35

[sbgrace]

To me that reads as if she requires an epi pen refill. Is that enough for your pediatrician. OAS is an allergy and can even cause anaphylaxis in my understanding. It's just that the sensitization is coming from something like pollen allergy and, therefore, it's possible a person might react to the food in allergy season and not react out. But it's still a reaction. Feed it??? Weird.

But I would think this is a recommendation for an epi and your ped. would take the letter that way (be careful w/walnut and carry epi pen is pretty clear I'd think).

[sbgrace]

I was looking for information on RAST numbers with positive cashew reactions and found this:

Rance et al (2003) [704] reports symptoms from 42 children (mean age at diagnosis 2.7 years) with cashew nut allergy including urticaria (31 cases, 26%), nonlaryngeal angio-oedema (36 cases, 32%), ..... oral allergy syndrome (two cases, 2%), vomiting (15 cases, 13%), ...... asthenia (one case, 0.8%)

http://foodallergens.ifr.ac.uk/clini...lected_food=15
OAS is an allergy and it can actually kill.

The same link has lots of studies summarized and one showed three cashew allergic patients with negative RAST numbers. She did have negative numbers. Which doesn't mean she can eat them/won't react.

[sbgrace]

This is what is sad. If she's really not allergic to those (including OAS) you want to know that so you can relax about it all and not avoid. But a negative RAST w/symptoms doesn't equal not allergic. She needs more testing including an in office challenge perhaps (from a competent allergist) to determine whether she truly is allergic. I wonder if insurance would approve a second opinion.

[Therese's Mommy]

This story infuriates me. You are a mom who just wants her child to be safe and no one will work with you toward that goal. I hope you are able to figure out a solution. Our first allergist was horrible. I hated her bedside manner. I decided we needed a change when dd's wheat number came back 5 on the RAST and she told me to do a food challenge AT HOME. And dd was 16 MONTHS at the time!!! I spoke to our ped and he was shocked and got us a new allergist who was flabbergasted at the other allergist's suggestion. So, there are some really bad ones out there. I hope you can get a second opinion. Perhaps if you find out your insurance will allow the second opinion you can post in your tribe to ask if anyone knows a good allergist. Sometimes calling the insurance company directly can help. In situations like this the squeakiest wheel often gets the oil.

[ChristaN]

Dd's ped did call me back and, when I explained about them wanting me to start feeding her those things that make her mouth itch, she laughed. Apparently her father is an allergist, so she said that she'd run our hx and concerns by him and call me back with what he recommends. She seemed to lean toward skin prick testing, but we'll see.

Dd is completely opposed to a food challenge. She has cried repeatedly when dh and I discuss it. She said that we don't know what it feels like to have your whole mouth, lips, and throat itch.

[ChristaN]

I work pt at our local hospital so I at least do have access to medically knowledgable people to run things by and I did stop by the ER today and ask if I could sit in the lobby with her if we did do a challenge outside of the dr's office. They said sure, but I'm still not sure that I want to risk her having a bad reaction even if we are in the hospital.

A local mom I know whose dd has severe allergies has recommended an allergist at National Jewish in Denver if we are able to go for a second opinion. I'm not ready to smear the first allergist. He may not be way off, but I am just not comfortable with risking it if he is wrong. Better safe than sorry.

And the fact remains that any time dd has accidentally eaten any small amount of peas, lentils, walnuts, or cashews, her mouth and throat itch and we have had swelling of her eyes when she was a baby and her mouth more recently. I believe that indicates something, so it seems unlikely to me that the itching will just stop if we feed these things to her more frequently. I just want to feel a little more comfortable with knowing how likely this is to become more severe than itching if she is exposed again. I don't know if anyone can answer that for me, though.

[JaneS]

This whole situation infuriates me as well!! I just don't understand why an allergist would refuse to do an in office challenge.

National Jewish is at the forefront of food allergy research today. I would get in there for a second opinion.

[ChristaN]

Well, this is my old thread, so I can resurrect it .

I took dd in for a second opinion with another local allergist. I would have loved to have gone to National Jewish, but they are out of network & we would have wound up paying virtually 100% of the bill b/c out of network has a separate, high deductable and then insurance doesn't cover much after that. The local guy was good, though.

He said that he's been less and less impressed with RAST tests for tree nut allergies in particular over the years b/c he has seen a lot of false negatives. He did skin prick testing on her back for nine tree nuts and peas (he didn't have lentils on hand). The peas and seven of the tree nuts were minor reactions, but the pistachio and cashew were seriously huge welts.

They did two histamine spots for a control & it reacted as they expected (5mm/25mm wheel). Both pistachio and cashew were more than twice the size of the straight histamine. He is calling both of those "serious" allergies and re-prescribed the epi-pen. He will also be signing the forms for her to continue carrying the epi-pen at school.

[Therese's Mommy]

I am very glad to hear that you found an allergist that listened to your concerns and who seems to have his head on straight

[ChristaN]

Thanks and in regard to insurance, as you mentioned earlier, I did wind up dealing directly with the insurance co and they are going to pay for part of this second consult. They would not have had we gone out of network, but this seems to have worked just fine.

Originally Posted by Therese's Mommy

I hope you can get a second opinion. Perhaps if you find out your insurance will allow the second opinion you can post in your tribe to ask if anyone knows a good allergist. Sometimes calling the insurance company directly can help. In situations like this the squeakiest wheel often gets the oil.