Talking Allergies

I apologize to everyone for not being around lately. The last few months have been very busy for us.

I wanted to let everyone know that tomorrow we take Joshua (my almost 3 year old who's anaphylactic to eggs) to the city to have a challenge. We thought long and hard about this and yes we are nervous (terrified) but we think this is better in the long run. Joshua has stopped reacting to small amounts of egg that he comes into contact with (he used to get hives if even a little touched him) and he's testing negative for the allergy in his blood tests. So now the only thing to do is expose him to the allergy and see what happens. The Pediatric allergist that we deal with now had a good reason for doing the challenge on Joshua now as we did have reservations.... He said that for one thing Joshua is starting pre-school in the fall and it would be good to know whether or not hes still allergic to the egg. Also he said that Egg is one of the allergens that tends to get hidden in a lot of foods and products.... everyone is so hyper aware of nuts and peanuts but egg/dairy/wheat that sort of stuff, eventhough it is watched for, is not as regulated, especially in schools and what not. At any rate he won us over to his way of thinking so here we go.... Tomorrow at 8:30 am Joshua gets his first taste of french toast.... Here's hoping it all goes well!!
I'll post again and let you all know how it went.
Robin

I hope all went well with your sons challenge. What is your sons allergists name. I am also from Alberta, close to Edmonton.

We'll find out tomorrow *eek* Very nervous.... We'll let you know.

Our allergists name is Dr. Van Der Leek. He's a very nice man (in Edmonton - on the campus)

We'll be thinking of you and your brave little boy!

Just got home....

The test didn't go so well. He reacted quite violently to his second taste of the french toast (they cut off a little piece, about 1 cm by 1 cm, to eat first then you wait 15 min and try another piece). So we called the test quits and Joshua got some medicine and then he fell asleep from the whole ordeal for two hours in my lap (NEVER sleeps during the day anymore). We had to hang around the city for an additional 4 hours just to make sure there was no secondary reaction (its a 2 hour drive home with no where to stop in case of an emergency) so we went to West Edmonton Mall. Joshua didn't really bounce back until we finally headed home. At least we know he's still allergic though, and now we can REALLY prepare for school this fall. Poor kid... he was so brave and such a trooper.
Anyway... thats all folks! Thanks for the support!
Robin

Sorry to hear it didn't go so well. So glad that he is resting comfortably.
This is a good reminder that just because you test negative, you might not be allergy free. Anyone who recomends a challenge outside of a hospital is playing with fire! (I'm amazed at how often I hear of it)

I am too... a girlfriend of mine said to me last week..."Why wait? I can scramble an egg right now and we're only five blocks from the hospital" The thing she didn't get was we didn't know how much egg would make Josh react (very little apparently), how violent the reaction would be (really violent) and the doctors here aren't prepared the same way a pediatric allergist is for that kind of emergency. Yes they would have probably been able to stabalize him BUT Josh would have been transferred to the city by ambulance for the rest of his care.... by the pediatric allergist. Why take the additional risk when you are already taking a BIG risk just doing the test in the hospital itself?

Anyway.... I've checked on Josh 3 times now and he seems to be good (paranoid or what? LOL) and now I'm going to bed to get some much needed rest! Thanks for the support!
Robin

Sorry to hear about your ordeal! Thanks for letting us know how the test turned out. Lisa

Sorry about the results of the egg challenge. Was this his first egg challenge? My son had a egg challenge about 2 years ago in a "baked" product, banana bread. He passed in the hosptial but on two other occasions he had banana bread around supper time and around 1:30 am (both times) he threw up so we assumed it was from the banana bread. That was the only thing that happened to him. We stopped giving him anything with egg in it from that point on. That was two years ago. His allergist feels he is ready for another egg challenge but this time, it will be french toast or scrambled eggs. HIs appointment is in August, I am not sure if I will keep the appointment. It is scary! His blood test score for the egg allergy was low but...... Did Josh have the blood test to check the egg allergy? If so, what was the number. I think Justin's was 1.5 or something. His peanut reading was 4.3 and the milk reading was a little higher than the egg reading. What were your son's symptoms when he reacted? You must have been so nervous and scared.

Yes this was Joshua's first challenge.... it was pretty freaky, I was sooooo sick everytime I thought about it LOL. They fed him his first bite (1cm by 1cm square piece of french toast) and about 2 min later he started pulling at his ears and saying his teeth hurt. The doctor took a look at him and said his throat was a tiny bit red but we would wait 10 min and if it stayed the same or got better we would feed Josh somemore. If it got worse we would stop. I agreed and 10 min later he was fine so we fed him the second piece (same size as the first) and not even five minutes after that he started screaming his tummy hurt and he turned an awful shade of grey. Then the whites of his eyes started to turn red and then the sweat started pouring off of him (literally dripping) and he got all floppy. The nurse took us to an exam room to wait for the doctor and Josh was sitting on the table talking to me (he looked terrible but he was talking) when all of a sudden he fell sideways and just lay there. I asked him if he was okay and he whispered "no" then he turned even greyer (the color of paper mache) and I started hollering for the nurse. She brought the doctor and they shot some reactin down the back of his throat and the Doc said if it didn't start to help him in the next five min we would give him a shot of adreniline. It helped some anyway. Josh got really sleepy (part of the reaction) and fell asleep for two hours (!!!!! Never sleeps in the day anymore) and the nurse kept trying to wake him up but he would barely twitch. At the end of two hours he finalliy woke up and told us he was feeling better. It was awful! I was sick for most of the night before and all day that day from nerves

Josh's blood test level was 1.25 BUT his first reaction to egg was severe anaphylaxis (his blood test measured in at 5.6 a month after that first reaction), and that was when he was one... apparently that is unusual. He swelled up and almost stopped breathing and he was COVERED in hives. The whites of his eyes actually filled with fluid and swelled out past his lids... I think that freaked me out more. It's been two years and he had stopped reacting to small amounts of egg touching his skin (he used to get hives at contact points) and his blood tests looked promising but it doesn't seem like he's outgrown it any. Even though the challenge was scary, the doctor and nurses were fantastic and I really think it was worth it cause now at least we know where we stand with his allergy and we know how severe it is. If he reacts that badly to two 1cm pieces of french toast then its a pretty bad allergy. Better to find out in the hospital under controlled conditions on purpose (prepared) than at a birthday party or at school where someone inadvertantly gives him a bit of cake or a cookie.

He is back to his usual bouncy annoying self today LOL Yesterday he was still a little tired and droopy. I would recommend the challenge ONLY if you trust your Allergist. If you don't trust him/her then you should go with your gut and not do it. I trusted mine to call it quits when he OR I thought it was time. He listened to my opinion and he didn't leave us hanging. And he was FANTASTIC with Joshua.

Sorry... I didn't intend that to be so long winded LOL I hope that helped.... or not I suppose I shouldn't have been so graphic... sorry. Don't let this freak you out... you never know. Your son may not be allergic or AS allergic anymore and that would be one less allergy to worry about right?
Robin

Robin, I really appreciate your taking the time to let us know in detail how it went. How scary for you all!

Hi Robin and everyone, I just read your account of Josh's egg challenge. My daughter just turned 3 and has severe egg and milk allergy. When she was diagnosed by her pediatric allergist at the age of 1, her egg allergy was more severe than the milk. Every time she sees her ped. (every 6 months now) I ask him about re-testing and he hasn't been over-encouraging. He did tell me at our last visit that he would re-test her for milk in November this year. (He doesn't offer any hope of having outgrown the egg allergy yet). Can you tell me what the process is leading up to the actual challenge? Do they first repeat the skin testing and blood tests, then decide whether they'll challenge? Or do they sometimes just do the challenge? Do they have an i.v. catheter in place for rapid access to a vein in case of severe reaction? I suppose it's different in each case and from one doctor to another. After reading of your ordeal with Josh I'm getting nervous already at the prospect of having her challenged this fall. But as you said the pros are that if she has outgrown it, it's one less worry in our lives. I can't believe anyone would even consider at-home challenges or anything other than in a hospital. One of my friends just said to me a few weeks ago that it's really not that bad since my daughter's only reaction when she accidently contacts milk is that she breaks out in hives, you know, that's really not so bad!!!! I told her that's the only reaction she's had when twice in the last 2 years she accidently ate baked products that contained milk ingredients. If she were to drink or eat something with pure milk (ice cream, whipped cream, etc), it would be much worse. And I wanted to say that hives are what we see on the outside; we don't know how crappy they may be feeling on the inside!! And hives can be an early part of a full anaphylactic reaction. And .. . . sorry for the rant but I'm so sick of people who know absolutely nothing about food allergies or what it's like to have an affected child, offering advice or opinions on the subject. .. .There, I'm done and I better go get some laundry done!

_________________
Carrie

Robin,
It sounds to me like your son could have been going into anaphylactic shock. As I understand it, he wasn't injected with epinephrine at any point? I would guess that he would have fallen asleep like that because his blood pressure dropped. Did your allergist check his blood pressure to be sure that he wasn't going into shock? The whole thing sounds rather scary because you couldn't wake him up.

justonemom and anyone else considering food challenges--
I've had food challenges before---but not to anything I've had an anaphylactic reaction to so it wasn't quite the same thing. The doctor proceeded cautiously and so I imagine that the procedure would be the same (or nearly the same) for a major allergy.

He had done a scratch test earlier from the sample prepared in the lab, but at the appointment he also did a scratch test with the actual food that I was going to eat. Then he had me put a tiny piece under my tongue for about 15 minutes and told me to spit it out if I felt anything. Since both those tests went fine, he had me eat a little bit at a time..I'm not sure how long I had to wait in between since I didn't time it, but 10-15 minutes sounds right. I think I was there for about an hour after taking the first bite....but, again, I didn't really pay that close attention to how long it took. I asked him at the end whether I could finish off the sample of food I brought in with me when I went home since I "passed the test" and he advised against eating more of the food on that day in case I had a delayed reaction.

During one test, my nasal passages suddenly got really congested, and I mentioned it to the doctor. I wasn't all that concerned because my nose is stuffy nearly all the time--and the doctor said that it was *possible* that it could be a mild reaction to the food but not probable (I have a lot of environmental allergies). Just as a precaution, he examined my throat and took my blood pressure both of which were fine.

Lisa

Justonemom:
Sorry I just got your message.... we've been away. There wasn't any testing before Josh's challenge the Doc just said it was time. He said that Josh would test positive with the skin test for an allergy for the rest of his life(?) and the blood test is usless until he is re-exposed to the allergen cause you only have antibodies in your blood when you've been exposed so that would mean getting whatever you're allergic to. As for the catheter, no... they didn't put one in. The epi-pen (or adreniline) has to be injected into muscle or fatty tissue.... or at least thats what I get from the brochure that came with Joshua junior pen. I too am really sick of the attitudes from people with non-allergic children... like you are blowing it all out of proportion. I just recently visited my sister and the day I arrived she fed her kids something called Rancherios (??), they require 12 eggs to make!!! I told her josh couldn't even come close to her kids till they had been bathed and changed (it was all over their clothes) and she rolled her eyes. It makes my stomach turn.... if it was her kids I know for sure she would be just as strict. Josh also has a touch of asthma (most children with allergies are at high risk for this) and I told her she couldn't smoke anywhere near him but she did anyway when she was outside... when I told her, again, that she couldn't do that she shrugged and said that it wouldn't hurt him... they were outside. He spent a lot of the visit coughing and I ended up leaving early. Rant away.... I know how frustrating it is. A lot of people just assume that if it isn't nuts it can't be THAT bad. I've now started telling people "you bring anything with egg around my child and you could kill him" That seems to get through a little quicker.
I know it's scary but like you've said and I believe, it is better to know. Don't do it if you are even a little uncomfortable with your doctor... make sure you trust him completely and discuss with him before the challenge that if you say you want to stop the test the the test stops.... Thats important because you know your child better than anyone. And don't worry... they only get a very small (1 cm by 1cm piece) and then you wait 15 min to see what happens. I was really scared too cause I thought they wanted Josh to eat the whole peice of french toast at once.... thankfully they don't do it that way.

Lisa:
Yeah I agree... I think Josh was going into anaphylactic shock. The doctor was very calm about it all ( thankfully) and he tried the Reactin first and said if it didn't work in five min then we would adminster then pen. They did check his blood pressure and it was low but it had started coming back up. I think the tests for kids and adults must be different. The Doc said that with kids they don't epress things the same way we do, that we might misinterrpret something they say or do... Josh for instance didn't say his toungue tingled or anything but he did say his teeth hurt, then he said his tummy hurt. I asked the doc about just putting a peice on Josh's tongue and but he said it's nearly impossible to tell that way with a kid Josh's age cause they eat it anyway LOL Especially when it's SLATHERED in syrop *grin* I asked about the scratch test too but he said since Josh wasn't reacting to egg touching his skin at home (he had gotten mayonnaise on him about a month earlier and normally he would have broken out in hives but nothing happened) that there was hope that the allergy was gone and the best way to test this was to do the challenge. I think I might have misunderstood him but he also said something about Josh testing positive for the allergy in a skin test even if he had outgrown it due to the body carrying a memory or something.... I got a little confused over that point. I think most of the time most doctors are VERY cautious with these challenges.... and I'm VERY thankful for that. I'm glad to hear your challnege went well at least... how long ago was that?

Well that was long winded... *smile*
Robin

I went through this a lot when dd was first diagnosed. Two thoughts come to mind:
1. Everyone who is not allergic or a parent of an allergic child will be lower on the learning curve-they aren't living and breathing this day in and day out. For your own sanity, accept this and keep reinforcing the information.
2. Teach your child to avoid the smoke. Yes, keep telling your sister that it is an asthma trigger and will cause an attack. Then turn to him and tel him that he can't stand near her as the smoke is a trigger that will cause an attack. Concider it an opportunity for both to learn.
We recently went to a family reunion and dd was insistant that she wanted a marshmallow roast. She had one marshmallow and was done. She was alowed to roast the marshmalow, but she had to keep moving to aviod the smoke. (there was a steady breeze but the wind did shift a bit, I'd never have allowed her to if it was a calm night!)