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View Full Version : *UPDATE* Parents of kids with allergies...or anyone else interested in a novel (REALLY long)



lilycat88
06-08-2006, 12:51 PM
Thanks for all of the replies. We took Susanna to her ENT almost 2 weeks ago and he ordered a complete battery of allergy testing via the blood tests. The poor child had EIGHT tubes of blood taken. When we had her in the peds office today for her 2 year well child visit, she mentioned that she had received a copy of the test results yesterday. She didn't have many comments on them (wanted the interpretation to come from the ENT/allergist) but she did point out a couple of things that jumped out at her...all food.

Milk - her level was 7 and the desired range was <2
Wheat - her level was 14 and the desired range was <2
Egg White - her level was 20 and the desired range was <2

On a scale of 1-5, Milk was a 1 (Low antibody level), Wheat was a 2 (Moderate antibody levels), and Egg White was a 4 (Very High Antibody levels).

When I read through the test results on my own, I noticed her Soy level was 2 and Corn level was 3 and the desired range on those was <2 as well. That put her in the 0/1 level for those. So, don't know what that means, if anything.

All indoor/outdoor molds, animals, pollens, etc. were negative. Her ENT is out of town right now so we won't be able to talk to him about any of the results until after the 4th.

Thanks again. I feel like we're at least getting somewhere.

Jamelin

*******************************

I need some outside perspective. As I’ve talked about on several occasions, Susanna has struggled with ear infections and nasal drainage since she was about 4 months old. She’s had so many rounds of antibiotics that I’ve lost count. She is in daycare but we have always suspected allergies as one of the major contributors but we’ve agreed with her pediatrician about treating the symptoms and waiting on allergy testing. She’s currently on Clarinex, Singulair and Pulmicort (adding albuterol when she is especially junky) breathing treatments. She doesn’t seem to have asthma since her chest only gets congested when she has an ear infection. She has ear infections so much that we’ve not been able to get her off the breathing treatments.

Around Easter, we took her to an Easter egg hunt where there were live rabbits. She never actually touched one but was about 18 inches away. She almost immediately started tearing, sneezing and broke out in a rash. The rash actually wasn’t completely new but it got worse. She has a continual rash on her upper thighs and arms that her doctor has called Keratosis Pyloris. We have an appointment with a peds dermatologist in a couple of weeks. From the research I’ve done, it doesn’t seem that the skin condition is related to any sort of allergic condition.

So, the rabbit reaction combined with her shortly after that developing another ear infection while on the 2nd round of antibiotics for the previous one (she got sick, took a 5 day course of Zithromax and then took 5 days off and then back on for 5 days…she got sick during the 2nd 5 day course), led us to pursue a pediatric allergy consult last week. She had skin testing done for all indoor allergens as well as an assortment of animals (including rabbit). He didn’t do outdoor because her problems are around regardless of season. He also didn’t do food because he didn’t think she exhibited the “classic� food allergy symptoms. This is where I kick myself. I didn’t push for the food testing. The allergy testing didn’t show she was allergic to anything. She had to be off the Clarinex for a week prior to the appointment for testing. She immediately started with the clear runny nose that quickly went to green and by Monday we were in the peds office with another ear infection. Her pede hadn’t received the allergist report yet but was very surprised when we told her nothing showed up in the testing and was even more surprised when I told her he hadn’t tested for food allergies…milk in particular. She suggested we try dairy free for a couple of weeks and see what happens. We are doing this. She’s back on all of the medicines she was on before plus an oral antibiotic. We’re just at a loss. I’m angry that I didn’t push for the food allergy testing even though she doesn’t have the classic symptoms. I’m mad at the allergist who basically said “I don’t know what to tell you� when I asked him why, if she didn’t have allergies, the Clarinex seemed to keep everything somewhat under control. He just sort of blamed it on daycare and said she was just catching all of the bugs.

So, if you’ve made it this far, what would you do? We’ve considered contacting the allergist office again and seeing if they will do a RAST test for the food allergens so we can get a quicker answer than waiting for weeks on the elimination diet. We’re willing to do the dairy free diet but it is really hard to cut a toddler off from milk and cheese when they have been used to having it. She’s in daycare as well and that makes it even harder. They are working with us but it is challenging.

Any thoughts?

ETA: She had her first set of tubes at 10 months and her second at 17 months.

jhrabosk
06-08-2006, 01:04 PM
Sorry, I don't have anything to contribute, but I'm curious to hear what others have to say. I'm suspecting we may be at the beginning of the allergy testing road, but no where near as serious as yours.

Sorry you're going through such a tough time! I'm learning how frustrating it is to not know what's wrong or how to make it better...

lizajane
06-08-2006, 01:12 PM
definitely call a ped allergist and ask for both the RAST and blood tests. dylan had both and his (minor) allergies didn't show up in the skin test, but they did in the blood test. he is allergic to milk- it makes him vomit- so clearly a very real allergy.

DEFINITELY take her off dairy fora MONTH. see what happens. try rice dream milk and be sure to get her lots of fat in things like avacado, olive oil and maybe dark meat chicken or salmon if you think she can tolerate it.

i would take her off of ALL:
milk/dairy
eggs
soy
corn
wheat

see if anything changes. if she clears up, try reintroducing things back into her diet one at a time, waiting a week or more to see if symptoms come back. but hold off on dairy, for sure.

i would also consult a chiropractor about her ear infections. may sound silly to you, but i have heard some incredible stories lately and chiropratic care has changed my life.

octmom
06-08-2006, 01:15 PM
No BTDT advice, but lots of sympathy from me. DS got tubes almost a year ago and has been EI free since, but I remember how awful it was to have one infection after another before he got them and that was without all the breathing stuff you have dealt with. If I were in your shoes, I think I would push for the food allergens testing just to know.

I hope you get some answers and that things improve for your DD soon!

Jerilyn
DS, Sean 10/03
DD, Katie 3/06

"Baby makes days shorter, nights longer, home happier, and love stronger."

pb&j
06-08-2006, 01:48 PM
The RAST test is worth a shot...

I'm interested to hear what others have to say. DS has just had two ear infections, one right after the other, and I'm afraid he may have his mommy's propensity for otitis media, and his daddy's hay fever. It's like the perfect storm behind his eardrums!


-Ry,
mom to Emma, stillborn 11/04/04
and Max, 01/05/06

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cilantromapuche
06-08-2006, 01:53 PM
have been there and cried. I would find a different pediatric allergist and get a good recommendation. That was the life saver for us.
Christine

mama to A (7/03)and a girl (6/06)

mamato1
06-08-2006, 02:00 PM
I would either insist that they do the RAST test or find another allergist. We just got back from my son's new pediatric allergist and I can not tell you how relieved I am that I made the switch. I won't bore you with my really long story, but just wanted to give you the encouragement to insist on what you feel is right for your DD. It is so hard to advocate for your kid in the medical system because it is so intimidating. Hang in there, answers have to be on the way.

Chris

Mama to Brendan (aka Boomer) 01/04


http://b3.lilypie.com/FnI6m5/.png

rfeibelm
06-08-2006, 03:47 PM
I'll give you my experience FWIW. My ds is now 2, but he started daycare at 10 wks and got his 1st cold soo thereafter. He started with a chronic cough at about 4 months. It seemd like he always had it and he also had several ear infections. We too went through several courses of antibiotics, to no avail. We finally went to the ped allergist after having been on Xopenex without much improvement. Neg allergy test except to dust mites. Did a dairy elimination for 2 weeks - no change and boy was that hard! When we moved to Richmond at about 18 mo, the pediatrician told me he likely had a sinus infection and put him on Omnicef for 21 days. She said any shorter and it wouldn't clear up. What do you know, he got better! I think he's just one that whenever he gets a cold, it goes to his chest and then he gets a cough. At one point, he was on Zyrtec, Pulmicort, Xopenex, and Singulair. I was nebulizing him 3x/day and I was miserable! Now, he's off everything and doing great. A lot of it may be that he's outgrown it? Who knows? But, I jsut wanted to share my experience, as jumbled as it came out :) Hope it helps amd feel free to email or PM.

Elilly
06-08-2006, 07:55 PM
How is Dylan doing? Was it "just" dairy?

Elilly
06-08-2006, 07:58 PM
We take Graham to a very competent immunologist. We, too, had a run in with a ped allergist in Indy who wasn't as thorough as I would have liked. Definitely test for food allergies. If you want our immunologist's name, just let me know.

Lynnie
06-08-2006, 08:28 PM
You poor things ! we are going through somewhat of the same thing here - just had set #2 of tubes put in. I don't know if you've tried trying to protect against dust mites, but that is what we are going to do. Going to get all those cover things for the mattress and pillows, and rip up the carpet. If you haven't tried that, maybe it could help.

I am taking him in for a pediatric allergy consult at the end of this month, but our ped was able to do a blood test, and it indicated that he is allergic to eggs and milk. (he loves/d both, and while I don't know what the classic symptoms were, I never saw an obvious connection.) He is currently driking rice dream milk, and is fine with it, so you may want to try that, as a pp suggested.

Good luck !!

barbarhow
06-08-2006, 08:45 PM
We had a similar experience with Jack who got his first ear infection shortly after starting daycare and then had then frequently until he was about 26 months old. He was diagnosed with milk and egg allergies at 14 months. He cleared the egg allergy by his 24 m onth repeat skin test. We are in the process of all the testing now-it looks like he has outgrown the milk allergy. He had a clear skin test and we are waiting for the RAST results that were drawn on Tuesday.
Jack had a miserable time and spent several months on suppression antibiotics. I was adamant about him not having tubes and our FP was willing to go the distance with me to try and avoid them. His ears improved once off of the dairy. He got colds less frequently. I also think that age is a factor. As kids grow their eustachian tubes develop more of an angle preventing fluids from pooling around the ear drum. (Not my most scientific explanation-sorry). I think all of this factored in to his improvement. He has not had an ear infection since last August.
Your poor daughter sounds like she is highly allergic. She sounds very similar to the way Jack was, but worse. I would insist on the skin testing for food allergens. You can try and tough out an elimination diet but then you would still want to confirm it. Why do both? Our allergist wanted Jack off of any antihistamines for at least 10 days. I agree with you-it is pretty difficult. JAck was in daycare, too. We had to gradually switch him over to soy milk, cut out cheese, etc. Daycare was great about it. They provided snacks for other kids. I made a list of what of theirs he could have and took in some of my own snacks for him. We made a giant tupperware of Jack's snacks.
Feel free to PM me if you want any other ideas or support. In the meantime many hugs. It sucks and it is hard.

lilycat88
06-08-2006, 10:01 PM
I can't seem to email or pm you through the boards. I would love to have the name of your immunologist. We're trying to get the allergist from last week to order the RAST test but I'm not hopeful. Could you email me at lilycat88 at hotmail.com.

Thanks Erica.

lizajane
06-09-2006, 08:21 AM
sigh...

it was dairy, egg whites, corn, onion and wheat...

but the wheat was SO minor, he said to totally ignore it. could be a false positive...

momofjandl
06-09-2006, 09:14 AM
First of all, I want to say my heart goes out to you in dealing with this. And good for you in advocating for your child. I know dealing with possible allergies can be a tough thing.

My son is 3 and is allergic to pnuts, tree nuts, egg, soy, sesame, dogs, pollen, and mold. And probably many other things...but his arm is only so big to do so much testing. :) We found out around 2, but honestly suspected since birth.

I talked to my pedi regularly about his symptoms and was always told to keep him away from dogs, don't try those foods till he's 3, etc. It wasn't until he had a near anaphylactic reaction to walnut dust that we were told to get him tested. He had a skin prick and all the above were positive.

The lesson I am trying to get across is "go with your instincts". And the 2nd lesson is "doctors don't always know everything."

I think our society tends to defer to doctors and think they have all the answers. But really we are the ones that are with our children day in and day out. And I've found that a mother's instinct is always right.

Allergy testing is now picnic at that park. But if you suspect it might be food then get her tested.

You can try to pull things from her diet. But I would do one thing at a time so you can pinpoint what it is. And even then it is hard. You have to ck each and every ingredient on every product. Lucklily food labeling laws have changed and so it should say Contains: Milk, for instance.

But keep in mind that there is also cross contamination. You might have wiped that knife you used to cut a piece of butter. But some children are so allergic that if you then use the knife to cut her sandwich or what not, there could still be a trace of milk.

That's why I am a firm believer in testing. It's in a controled environment.

Anyways, I guess this turned out to be a novel too. LOL

Best of luck with you whatever you choose. If you have any specific allergy questions feel free to email me.

Ruth

classyt
06-09-2006, 03:20 PM
I feel for you. And it is not just daycare.

Luke is not in daycare and never has been. He stays home with me and we aren't exposed to other kids that much. Yet he has had 7 ear infections since he was nine months {he's now 22 months) and croup 4 times. We finally figured out that it's probably allergies {we have 2 cats). We are about to have him tested to be sure what he's allergic to so that we can take next steps. He's been on Zyrtec for 3 months and it's just not doing the trick. The ped said any other meds would be similar and we shouldn't try other meds. Not sure on this reco.

Anyway, we are really determined not to do tubes. So we're trying other things. All the necessary stuff to remove allergens from his room, etc. Also looking into some alternative medicine {including chiropractic stuff) although I'm not totally sure about this stuff.

One question I have is about the RAST test? My doctor ordered blood work on Luke, but I'm not sure if it's a RAST test. How would I know? On our lab sheet it just says Hemogram, HGB & HCT and then Adult Food Profile and UR Disease Profile {under allergies). Anyone know if this is RAST?

Hang in there and definitely question the doctors. I am getting so fed up with my child just being medicated and no attempts to PREVENT the problem. So we're taking it into our own hands somewhat. Good luck.

Elilly
06-09-2006, 07:04 PM
The corn really bites doesn't it?! A friend of mine has a daughter with corn, egg, and chocolate allergies. Hopefull he'll outgrow them all.
The learning curve really bites. FYI, Bell and Evans chicken nuggets are corn and egg free. Sorry, I don't know about the onion. Also, TJ's cereal bars are corn and egg free too.