Saturday, December 27, 2008

The Best News Ever... well, ALMOST the Best

This past week, we received a call from Witt's allergist with the RAST blood test results.

Initially, the only information the nurse was going to give me was that:


EVERYTHING CAME BACK NEGATIVE!! (WooHOO!)




Now, let me do a little explaining here for those of you going... "HUH? How can it all be negative when his back whelped up like that?"


Here's my layman understanding (allergy moms... help me out here if I get it wrong)... The scratch test is like a Yes/No test and the blood test gives the severity (fast or slow reaction).


So, although he is still allergic, the severity has lessened from last year.



It's well documented here in my blog that I'm not really thrilled with the allergist's office staff or the nursing staff, but the allergist is the best in the area so we stay. Like I said, the only information the nurse was going to give me is that everything was negative.

I probed further about the milk. (I don't know why I didn't ask about the eggs or peanut. Excitement I suppose.)

Anyway, I asked what the level comparison was from this year to last for milk. She said that last year his level was 0.66 and that this year it was "less than 0.35". I don't know what the units are or exactly what that measures, but it DROPPED IN HALF, people! HALF!

(Update... ie...Forgot to include this: His IgE level for milk was 62. I don't know what this means, but the nurse said that it just tells her that he's allergic. She didn't give the severity level.)

Does this mean he may no longer be anaphylactic to milk? (I'm certainly not going to test it out, but I am hopeful!)

I know I shouldn't get my hopes up, but I really can't help it even though I've read stories of people who have had similar reductions one year just to triple the following year.



The allergist's recommendations are to continue to avoid milk, eggs, and peanut.




I also asked why the control on his scratch test was puffy and the nurse said that they want it to do that because it tells them that it was a good test. Interesting. Having a chemistry and engineering background leaves me with so many questions about that... how does one scratch ensure that another is good? If one control is not puffy and the other is, do you re-administer the entire test or is one supposed to be puffy and the other not (like Witt's)? Just plain curiosity on my part here.

Allergy moms (and past allergy moms)... what are the questions you ask regarding the tests? I know allergy testing is not an exact science, but this is only our second test and I'm not sure I'm asking enough questions or the right ones. Does it really matter in the end as I'll be avoiding the foods just the same? Thanks for your help!

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8 comments:

reprehriestless warillever said...

Woo Hoo!

Jamie Kaufmann said...

what great news! merry christmas to YOU! :) i understand the confusion...getting negative blood tests and positive skin test. i thought that skin tests more of the external reaction...like being touched by the food and blood tests systemic reaction...like level of anaphylaxis...how much antibody their bodies are making in resistance to the food. but i could be wrong.

also, as for the numbers you got, witt's are good. here are the breakdowns on the numbers...copied from my blog. These are in reference to Miles's blood results over the years.


2006: kU/L was greater than 17.6 and was CLASS 4 (very high allergy)

2007: kU/L was 3.38 and was CLASS 3 (high allergy)

2008: kU/L was 1.07 and is now CLASS 2 (moderate allergy)

.35 - .70 kU/L is considered a low allergy.

under .35 kU/L is considered no allergy.

The allergist said that 15 kU/L is considered anaphylaxic most probably. And 7 kU/L is considered good enough to live challenge in most cases.

Miles scores negative to peanut in blood and skin even after being high the first year. But the allergist still had us avoid it until age three b/c peanut allergies are the worst and hard to outgrow. She wanted to give it another year just to make sure. We are able to try it now but still haven't.

As for Witt getting negative blood tests, that is a great sign. I have heard that the antibody levels change often (like every 3 days or something?) but in general they stay pretty close to the same level. I would think that he may not be anaphylactic. But given the skin results, I am not surprised that your allergist is just having you continue to avoid for another year.

I bet my allergist would say, "we can live test if you think you want to compromise the allergy and try to do baked in egg and milk. Some parents just don't want the inconvenience of strict avoidance. But since you are doing a great job at keeping it out of the diet...he would be better off in the long run to continue to avoid it until we test again next year."

Miles is the opposite, he is testing negative on skin and then positive on blood (it used to be high on both). But the blood levels are medium and would appear not too anaphylactic. However, our recent accident proved otherwise.

BOTTOM LINE: you just really don't know how allergic unless they actually eat it. The skin and blood tests are good indicators but allergies are so random and unpredictable...eating it tells the real truth.

If you are super curious about the egg and milk, you could ask for live tests in the office. They start with VERY minimal amounts and stop at any indication of reaction. They are equipped with meds of all levels to combat any reaction and I trust them to live test Miles. I would not be willing to live test at home if they say just to do that. Our allergist told us to try egg and peanut at home and I said no way so she let us pay her to do it at the office.

I would be super grateful for the negative blood. Definitely avoid peanut until age 3. And decide if you are content keeping out egg and milk another year...or if you want to see what would happen live.

I did worry about setting miles back by live testing milk at age 2...if there was a reaction (and there was). But the allergist assured me that the minimal amounts in a live test will not affect their chances of outgrowing.

I know that is a lot of info. But I hope that helps! Overall, I think you got great news and it sounds like you are on your way to outgrowing food allergies!!!

Becky @ Boys Rule My Life said...

Thanks for all the info Jamie!!! Wow! I have so much to learn. Unfortunately my allergist isn't educating me very well. :(

I added the IgE level to the post as I had left it out the first time I published it. Got any clue about that? :)

Allergy Mom said...

Big congrats on the IgE results! The only additional info I can give you is that statistically, food allergic kids have a good chance of outgrowing most of their allergies except peanuts and shellfish.

I wanted to let you know (since you commented on the Marie Callender pie,) that I made a mistake. They are NOT safe. It's Mrs. Smith's pies that my aunt brings. I'm very sorry about the confusion. My aunt always cuts out the ingredient section of the label to bring with her for us to double check, and I simply mixed up the brands. I just hope you get this comment before picking one up at the store!

Katy said...

Great news! I follow Jamie's blog and just had to read your good news. As for my understanding of the numbers, at 1 my son tested for milk at .52 and egg whites were 1.2 or something like that. I'm not sure on the absolute exact numbers, but I know those are close.
In the allergist's documents, which I requested copies of, he listed milk as being "mild" and egg whites as "moderate". His notes go on to say that he recommends parents try goods with baked milk & eggs.
He also called me (yes, the allergist himself) and told me that my son could have a piece of cake on his birthday! He explained that his numbers were low enough that he is expected to outgrow both allergies, but that I should continue to abstain from as much milk & egg product as possible. We plan to retest in July, when my son is 2.
I rarely allow my son to have even baked in milk or eggs, but occasionally when travelling he'll have someone else's bread, or Wendy's chicken nuggets and I haven't noticed a reation yet. I hope this helps your understanding!

laurel said...

That is wonderful news!!!! Please continue to keep us updated!

My name is Dianna said...

That is great news, now I will pray that God will complete His miracle of complete healing from all these food allergies. Lord, let the boy have a milk chocolate Reese's cup next year for Christmas, with out going into shock and giving his poor mom a coronary, this really matters to us...Please....Amen.

Thanks for your comment:)
I am really trying to slow down....but then I start to think and play the what-if game...and that is not good for me, so I am wrestling with over committing and running...I have to deal with things. Thanks for your prayers, Becky!

mom24 said...

This sounds like great news and of course is something that should give you much hope! It must really relieve you to see a test that is moving in the right direction!
My *opinion* would be that the reason that the allergist isn't educating you very well is that he doeasn't have a great understanding himself. Really. The human body (and allergies in particular) is soooo complicated that although we *think* that doctors have a clue because they went to school for so long, they really don't know it *all*. Our mistake is to trust that they know *everything* and forget to pray for the Maker's wisdom (drs are only human after all). Pray for wisdom, and I think that the Lord will answer your questions for you. :-) He is faithful!

Also, you may want to research ways that you can make his gut stronger since most (in my opinion) food allergies have to do with gut dysbiosis (flora inbalance). When this happens, these foods may not get digested well enough and large particles get into the blood (leaky gut) which then causes the body to 'attack' them as allergens.
Again, just my opinion, but this is the route we have taken with 3yo Ashton and he seems to be getting better (testing again in a few months), as seen by the improvement in his exczema, behavior, and immune system. Soy (high in estrogen) and corn can be very hard on the gut, contain nutrient inhibiting phytates, and are often GMO, so maybe rice milk instead?

I'm NOT an expert - just traveling this road with you! I know that God will direct us to take the best care that we can of the beautiful kids He's given us! :-D
Continued blessings,
Andrea