Oral challenges--post your experience

I realize you're probably most interested in peanut challenge experiences, but DS is followed by Dr. Wood for multiple FA's.

My child had two oral food challenges at Dr. Wood's office. This was in 2002 so certain things may have changed, but here is some info:

The soy challenge (soy milk) was first with prior CAP RAST = 5.45 ku/L (technically passed, but we still noticed a swollen lip at home).

The milk challenge (via 1 tsp. chocolate pudding) was scheduled four weeks later (failed). CAP RAST prior to the challenge was 2.02 ku/L.

DS still remembers the milk challenge and didn't like it at all - the whole experience!

DS remains allergic to peanuts, tree nuts, dairy, ?soy and sesame. He was scheduled for a sesame challenge last year with Dr. Wood, but we moved away (plus we were nervous to proceed).

[This message has been edited by CS (edited January 31, 2005).]

[This message has been edited by CS (edited January 31, 2005).]

My dd had an egg challenge, a cranberry challenge, and a sweet potato challenge. They were on three separate dates. He told us to wait two weeks between each. Cap rast on cranberry and sweet potato was negative. On egg it was 0.11, with normal being less than 0.10. Her allergist considered that negative also. She had a history of anaphylaxis to egg (had to use the epi) at age 2 1/2, no egg since. She had hives as a baby on cranberry and sweet potato.

All of these food challenges were at age 9. It was really not at all stressful for us, as I had seen cap rast results and was very confident she would pass. Dd was not at all nervous as she has not had any reactions that she can remember, and she really wanted to be able to add foods to her severely restricted diet (she is also pa and milk allergic).

For the egg challenge, I brought several different forms of egg. Egg salad, meringue, and scrambled egg. She had a tiny amount, then he set a timer, came in 20 minutes later, checked her, had me give a larger amount, came in 30 minutes later, had me give a larger amount, came in 1 hour later, then we left. All went well.

The sweet potato challenge was really funny because I bought three all at the same time at the grocery store. When I went to cook them, I discovered that 2 were orange inside and 1 was yellow inside. I figured the yams and sweet potatoes got mixed together. I could not figure out which was the yam and which was the sweet potato, so I brought both. Her doctor could not figure it out either, so the nurses were all filing in to decide. No one could agree, so she got a tiny amount of each at the same time, waited 20 minutes, a little more of each, waited half an hour, a larger amount of each, waited an hour, then we left.

The cranberry challenge had to be fresh cranberries, so we had to wait until they were in season. He had me make a puree of fresh cranberries and sugar (to take away the bitterness), and he did increasing amounts like the others. Everything went fine.

I saw your child`s numbers, and I am sure I would be much more nervous doing a food challenge with those numbers. In our case I had dd`s allergist`s office fax me the results before we even discussed them. Because her numbers were so low, I really wasn`t worried. Due to her history of egg anaphylaxis, I had dd eat egg about 30 times at home before I sent her to school/day camp with it. As it turns out she decided she doesn`t like egg, so now I worry about continually exposing her so she does not develop the allergy again.

My DS was challenged for peanut in September and Almonds in December, our allergist told us they like to spread them out by at least 2 weeks.

MY DS was 5.5 at the time of the challenge. He had never had a severe reaction so had no memories of anything bad happening to him. We had talked a lot to him about the experience, all of the possible outcomes and he was excited to try to see if he could now "have the food the other kids have".

His CAP RAST for peanuts was negative in February 2004 and <.35 for almonds. We had bee watching his CAP RAST scores for a number of years and they were steadly going down.

The challenge itself was fine for DS, I was a wreck. We were at the office for about 4 hours, brought a jar or peanut (or almond) butter with us and some safe crackers and juice so that he would just not have to eat the nut butters. They first did skin tests first the traditional way and then with the actual nut butter. DS was negative on his skin tests for peanuts, and for the almond he was +1 but the allergist believes he was never allergic to almonds just sensitized.

They fed him a little, we waited 15 minutes, they fed him, more waited this went on for 3 hours the last dose was about a tablespoon of peanut butter. We brought a laptop and a movie with us, would pause the movie when he went in to eat and then re-start it. Kept him occupied and did not give him a chance to ruminate over what was happening.

We were pretty confident before the challenge that he would pass, I am not sure if I could have done it without that. DH did much better than I did, could actually watch DS eat the nut butters, I just sat in the waiting room trying not to panic and warning all of the other mothers that my son was having a peanut or almond challenge so if their kid was allergic to keep them away!

My biggest fear was actually that DS would not like the peanut/almond butters and that we would not have been able to complete the challenge (he is quite stubborn!) but he was quite a trooper.

Good luck with your decision and if you do decide to have it, the challenge.

Schnook

Bensmom,

I think it's great that you are wanting to have this test done for Ben. As I have said in your other thread, I would really like to have an oral challenge done on my ds when he is a little older.

If my child had multiple food allergies, I would want him tested separately for them. I guess just to give the body a rest from all the allergic food being reintroduced. Make sense?

I would also want to definitely witness this challenge being done. Probably not in the same room but perhaps through a 1-way mirror. I wouldn't want to cause any stress for my son with just being there. IMO, parents always have a better understanding of their children than their doctors do. For example, let's say Ben has had several reactions. Maybe he has a certain body language right before his reaction. This might be something that the doctor wouldn't recognize right away as being a problem.

Very excited for you and your family. I hope that everything goes well. [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

Schnook,

I wasn't clear. Has your ds outgrown his peanut allergy? If so, did he ever have any type of allergic reaction prior to the testing?

Thanks, these stories all help. My first thought was "how could I put my son at risk for an anaphylactic reaction, when he's almost sure to react somehow?" But then I thought about how most people who are allergic to peanuts don't have an anaphylactic reaction (don't recall the statistics, but it's fairly low) and I put him at risk of a car accident every time he gets in the car. And if he were to have a bad reaction, he'd be under the best of care. But still, why challenge when he's almost sure to react? Well, I guess there's the chance he might not, and frankly, if he does, I think it would be good for him to know what that feels like, especially as he gets older and more independent.

I'm not sure if we'd do peanuts or a tree nut first. He's positive for every tree nut, but I'm pretty sure he's not allergic to almonds and pecans. He had lots of those before he was diagnosed and never reacted. Peanuts (because of the high number) and walnuts (because that's the only thing he's ever reacted to) would be the biggies.

E-mom, don't get too excited, lol! This is far from definite!

I welcome more replies and any advice for preparing for a challenge.

Sorry, can't help it. I always try to be optimistic [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

Oh Boy...here come the downer you didn't want to hear from! We just had A. challenged to PN last Tuesday at Children's Hospital in Philadelphia. Her last challenge was 3 years ago--her response at that time was coughing/sneezing at 1 tsp. We stopped the challenge at that point.

Tuesday, after getting back a Rast Score of 3 to peanut we had her challenged again--hoping so desparately that she would pass, as she did to dairy and eggs.

She had approx 3/4 tsp and began experiencing coughing, severe congestion in her nasal passages, a thousand sneezes a minute and then a tightness in her chest. It all took just a minute or so. Epinephrine was administered, breathing treatment, oral steroids,and a great big hug after lots and lots of tears.

Would I go through it again or put her through the same? I like to think I would say, "Absolutely NOT!".. but in truth, if it is the only way to be sure then I guess we will be doing it for tree nuts in a few months!

Hope this helps.
Susie

Susie, Sorry it didn't go well and it must be so hard to see your child go through that. I do worry about that. But I wasn't looking for success stories, and stories with reactions and how the child felt about it afterward are helpful. How old is your daughter and how is she doing now? Will she want to do the tree nut one?

e-mom, hey optimism is good [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

WOW, I am shocked! I didn't think a dr would even consider it unless the tests came back lower then 2or3...but 100???

Has anyone ever heard of someone not being allergic & having a high IgE???

Sorry but I am just cought by surprise

My son will be having an oral challenge to chicken in February. However, he scored lower than a 2 this time around so we got the go ahead. His peanut is above 2 and Dr. Burks(nor will I) will not do an oral challenge unless it goes down significantly.

Personally, if my child scored 100 I would not go ahead w/ the oral challenge.

[This message has been edited by robinlp (edited January 31, 2005).]

kkeene and robin, I don't know if you saw my other topic about my appt with Dr. Wood. He has challenged someone with a score of 77 who passed. Since Ben has never reacted, despite definite ingestion of peanut flour and definite contamination (picking peanuts off and eating) he is willing to challenge Ben. He wasn't willing to 3 years ago when we saw him. He does think Ben will react, but there's just no telling. The first time we saw him, when I talked about what Ben had eaten and his lack of reaction, he expected the CAP RAST to come back quite low, but obviously it didn't. So, it's all just very confusing.

Bensmom - it's been a long time since we've connected. We are one of the lucky ones who no longer have food allergies. I do, however, poke around the boards every few months or so and see how everyone is doing. I have posted my story a few times. I'll try to make it short this time. DS only had one reaction when he ate PB&J at his birthday party when he turned one. He had hives on his neck and a few on his face. He tested positive through CapRast as well as a few skin tests over the years. We tested him again before turning six and his CapRast and skin test came back negative. That is why we decided to do the challenge. DS also really wanted to have the challenge. We waited 8 months for an appointment at Children's Hospital in Boston. The testing was similar to those who have already posted (increasing amounts consumed over a period of three hours). He had no probelm and really liked his first taste. Towards the end he started to hate the taste though. I couldn't blame him. He must have had three tablespoons of plain, dry PB. Now that he can eat it, he doesn't want to. The great thing though is to know that he is in no danger if he does come in contact with it.

I'm not so sure I would have done the challenge if he reacted to the skin or blood test. I think if he never had a reaction though, perhaps I would have been up for the challenge.

Just curious why Dr. Wood wants to give Ben a challenge if he believes he will react. Is he interested in seeing the level of the reaction? Isn't it true that each time a person reacts, there is a greater chance they will not outgrow the allergy? Are you setting yourself up for that?

I wish you luck with your decision and hope all goes well.

e-mom:

My DS had hives and described an "ouchy in his throat" at his first ingestion of peanut butter at 2.5 years. He also had some episodes of vomiting that in retrospect were probably cross-contamination (before we tightened our comfort zone). He had no reactions to almonds and was eating them prior to the positive RAST for almonds. Allergist thinks he was sensitized but not allergic to almonds.

My DS no longer has any food allergies and is one of those kids that has to eat peanuts 3 times a week so that he will not re-gain his allergy.

Schnook

AmyR, long time no see! I'm glad to hear you no longer have to deal with allergies. The reason Dr. Wood is willing to challenge Ben is that he said he's seen enough exceptions (such as the person with a CAP RAST of 77 who passed) that he doesn't want to saddle someone with a lifelong diagnosis when they may not even be allergic. He's never challenged anyone over 100, so I guess he just figures with a score that high, Ben's likely to react, but he really doesn't know. He admitted to being interested in the result--after all the guy is a researcher.

As for doing harm by exposing him, that's not the impression I got from Dr. Wood. I asked him whether Ben eating a "may contain" product would be detrimental to him if indeed he did not react. Basically, if he accidentally ingested peanuts, but didn't react, is he any worse for the wear? He said it's unlikely that it has a negative affect. So I'm not too worried about him being exposed and then that leading to more reactions, but it is something to consider, and I will put that on my list of questions. Thanks for sharing your experience. By the way, the latest research indicates that people who outgrow pa should have regular ingestion of peanuts to keep the allergy from returning. So you might want to get some candy with peantus or something that your son will like and make sure he has it each week.

For our food challenges at Johns Hopkins with Dr. Wood, we were needed in the room with our child. In fact, Mary Kay Conover-Walker had me give the pudding to our DS. She usually administers four food challenges at one time in separate rooms. It is probably different for a peanut challenge (someone would most likely be in the room with you the entire time). My son was four years old at the time so his memory of the dairy challenge is how awful he felt. An older boy (maybe 9-10 years old)across the little hallway was very ill with his dairy challenge, but also had a more emotionally response of disappointment....I'm guessing due to age and level of understanding. Our overall impression of RAST/CAP RAST is that of some skepticism. Our child's milk RAST ranged from .46 to 2.02. Dr. Wood thought DS had a good chance to pass the challenge (I think statistics show under 32 ku/L). DS was clearly under the preferred threshold, but reacted immediately to dairy even touching him. I can't remember, did your son have a skin test recently?

Now that DS is being treated at a different facility (non-researcher for food stats), we've been cautioned on risk vs. reward for sesame, etc. The ability to have dairy, however, is a nutritional benefit. If I were in your shoes, I would weigh the benefits against the risk. Unfortunately, over the course of his life, your son will probably have a "food challenge" of sorts and you'll know the results.

Dr. Wood told me the Epi works 9 of 10 times...I would ask him that, too.

If you do it, bring some activities. The rooms are small with just a tv and vcr. Perhaps that has changed and you can ask when you schedule. Best of luck in your decision, I know it is tempting and difficult!

I was also thinking that the issue is risk vs. benefit. It would be nice to know if your child is not pa; think of all the things you won`t have to worry about anymore. But Dr. Wood is telling you that he probably will react, so I am not so sure that I would want my child to be challenged if that were true. Dd`s allergist asked if I wanted her in the Xolair study. In the study they start with a baseline peanut challenge to see how much before the child reacts. I asked the allergist if this would decrease her chance of outgrowing it, and without a moment`s hesitation he said yes. So my concern for your child is that he will probably react and that will decrease his chance of outgrowing it. If I were you I think I would get a second opinion. I know that Dr. Wood has an excellent reputation, but also from reading these boards, it seems like maybe Dr. Wood has a looser comfort zone for doing food challenges than some other allergists. I recall several posts from different people with failed food challenges with Dr. Wood. Maybe you could do a search? Just to give you some perspective, my daughter`s last cap-rast for milk was 1.02 with negative being less than 0.10, and her allergist said it was too high for a challenge. And that is for milk which as someone else pointed out when removed from the diet can really affect nutritional status (calcium, protein, etc.), so the sooner she can have it the better.

CS, thanks for the additional information. Carefulmom, the only risk I'm worried about is an anaphylactic reaction. I'm sure he'd be ok, being right there at the hospital, but it would still be scary and could really affect my son emotionally (not to mention me!) I'm not worried about exposure hurting his chances of outgrowing the allergy--if he is truely allergic, he's really got no chance of outgrowing it with a score over 100. He's score's been over 100 for over 4 years so I don't think it's coming down. And if he isn't really allergic, or has outgrown it, but is still showing a high score, how would we ever know? I don't plan on getting a second opinion because Dr. Wood probably has more experience than anyone else I could talk to. There probably isn't another doctor who has challenged someone with a score of 50 or 77. In a way, this is a second opinion--Dr. Wood's second opinion. Three years ago, he said no way. I'm not trying to put Dr. Wood on a pedestal, but I wouldn't expect another doctor to give the green light to a challenge. I could have 5 other doctors tell me no, but I'd still seriously consider doing the challenge.

I think I've come to the conclusion that I'd like Ben challenged some time before he's a teenager. As CS said, he's bound to have a "challenge" sometime and I'd prefer it be in a controlled environment. If Ben's not ready, we can wait a few years, and in that time there will be more scientific and anecdotal evidence.

Can anyone tell me what the IgE # are that are concidered safe for testing per allergy.

Say waht would it have to come back in order to concider a egg challange? etc....

this is sorta - related ---

My husband I had a discussion last night -- that Our son's reactions were at 14 months old so he has no recollection of a reaction -- other than asthma symptoms - which we think may be contact reactions.

How can we prove to him how dangerous this alleregy is-- when he gets closer to being a teenager? Especially if he hasn't had a horrible reaction (asthma - although horrible -- seems to affect Mom more than Son -- emtionally)

We actually thought about -- how do we have a minor reaction - in a controlled environment -- so that he remembers -- before he goes off into this big world -- with only our words -- that this is dangerous. (then we imediatly thought that Child Protactive services would somhow here this conversation and come and take him away for Child endangerment)

Maybe that is what the challange would provide --- but is that really a risk vs benifit thing -- I don't know. Just ? no answers.

Well, right now it looks like we're not going to do any challenges just yet. Ben doesn't really want to and seems uncomfortable with it, so I think he needs to be a bit older. He also told me that it makes him nervous when others eat pb around him. He's not at a peanut free table at lunch--never saw the need for it. On the one hand, it might be nice to do the challenge so he can see how much (hopefully a lot) it would take to make him react, and he could see what would happen (hopefully minor.) But on the other hand, if he reacted to a small amount, and reacted violently, then he'd really be a nervous mess. *sigh* I think he needs another year or two at least before he's ready, but I did talk to him about why I thought it would be a good idea for him to be challenged as the teeenage years approach. And in another year or two, they'll know that much more about this allergy.