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Topic summary

Posted by CMdeux
 - August 17, 2013, 04:57:48 PM
I would think that if you could POSSIBLY manage it, doing a challenge of some kind with him would be a really, really, REALLY awesome idea.

You could probably get down to an amount of peanut that would be reasonably safe to challenge orally by dissolving pn in something else (milk?) and then diluting it further with more of the carrier-- serial dilution, if that makes sense.

If you go that route and want help figuring out pragmatic ways of doing this, let me know.  I'm happy to help or just to check your math.  I remember how stressful this was with DD's egg challenge.

I used careful mass measurements, but volumes are also a way to do serial dilution or careful high-precision dosing.  (This is how places like Sinai do challenges.  It seriously tickled our allergist that a patient did all of it for him the same way he recalled from residency days there.)

 
Posted by YouKnowWho
 - August 17, 2013, 04:38:59 PM
Well he did react this year - sometimes we cannot even get the histamine to raise  :disappointed:

Histamine 3/10
Saline 0
Peanut 3/10

Nothing spectacular - DS1 is my wonder kid when it comes to splotches during SPT's.

I question the hives in the huge box of peanuts because DS2 has atopic skin.  He doesn't have eczema but we do deal with insane hiving from viruses and uticaria.  He has hived from people touching him before.  There is no known reason as to why he hives when others touch him. 

Ugh.  DH is like it's not a big deal, gives DS1 comfort.  Yeah, well what about my panic/stress level, kwim?  I'm pretty sure it's taking years off my life.  No known food allergies would be much easier when dealing with his insane hives.
Posted by CMdeux
 - August 17, 2013, 04:10:44 PM
Any idea what a SPT would look like for DS2?

I ask only because the things that DD has definitely been allergic to, she has tended to be over class III to, and also to have spectacular skin tests for.

Except milk.  (Well, we can't be perfectly consistent, can we?  Where would be the fun in that?)

I would just think that if he popped with a half-dollar sized wheal, along with RAST that high, you'd probably be about 95% confident even without a challenge, YK?

Posted by YouKnowWho
 - August 17, 2013, 08:43:23 AM
We had an insane run there for DS1 at one point - wheat, rye, barley, rice, corn, oats, eggs, soy, dairy, peanuts and tree nuts.

Somehow I doubt he outgrew anything - his previous psychotic allergist said he was so small because it was obvious he was eating things he was allergic too.   ~)  Okay, tell me how eliminating corn is going to help that.  Because I went about it the way any rational person goes about eliminating allergens - I researched and found a long list of things corn could be and was thankful to find a list of foods that were safe about four pages long, but with the other allergens, that list was narrowed to about a half a page long. 

I remember crying on the deck after I had fed DS1 a carefully prepared chili for breakfast.  Yeah - we had to get creative since many breakfast foods were gone.  He had a bowel movement that was so loose and explosive his shoes had to be tossed.  The poor kid looked like hell and he was mortified.  That morning he cried because I wouldn't make him corn on the cob for breakfast.

We had a follow up appointment with the psycho that week.  She told me I was going overboard.  WHAT?  I didn't need to worry about may contains and shared lines because I had an epi pen, corn really wasn't that big an issue (just avoid blatant corn) and he could drink Gator Ade (which at the time had hfcs in many varieties, all others had corn derived ingredients) and wasn't she surprised to find out that Cracker Jacks had corn in it.  Startling since she also had a corn allergy.  No folks, this was not an alternative med dr - she was a board certified pediatric allergist  :insane: 

So I stepped back a few appointments to when we knew he was allergic to wheat, rye, barley, eggs, peanuts and tree nuts.  Eventually found a new allergist who challenged the peanuts and tree nuts.  So yes, wheat, rye, barley and eggs is a relief (even with the oat and dried bean intolerance).

Got the official class reports

DS1 -
Egg yolk - Class 2
Egg white - Class 3
Barley - Class 5
Rye - Class 6
Wheat - Class 6

Thanks to stupid insurance company and being forced to go through Lab Corp vs. Quest, I cannot see if there is an actual drop in numbers.  Class wise, we remain the same :/

DS2
Peanut - Class 4

Yeah, that is a huge jump from class 2 but allergist seems confident he will outgrow.  I am not as optimistic. 

I go back and forth on DS2 in regards to the allergen.  He once had hives from reaching into a box of peanuts (we knew he was possibly PA at that point - he just had no idea that they were peanuts).  He has never consumed them to the best of our knowledge.  Ugh.  I just want to know!!!
Posted by twinturbo
 - August 15, 2013, 02:08:58 PM
What are the numbers good for? Yeah, I know data point, triangulate with SPT and history, yada yada, but I'm starting to wonder what the point is if SPT would do the job with better accuracy or usable data. Why don't they run tolerance values simultaneously to see if it correlates? What is it called, positive correlation maybe.
Posted by maeve
 - August 15, 2013, 01:32:47 PM
I wish I could say we didn't add anything new this year.  In testing tree nuts this year, DD's allergist tested for pine nuts for the first time.  We've now added that to the list of tree nuts she's allergic too.  We were avoiding them anyway so it doesn't change anything in terms of management.  It's just the psychology of adding yet another allergen.

Oh, I do realize that clinically the 99 was irrelevant. Again, it's that psychological aspect of being below 100+.  Even the 67 number this year is irrelevant.  DD will always be allergic to peanuts.  We knew that from the first time she was tested.  And having had anaphylaxsis and having asthma makes her more likely to react severely. 
Posted by CMdeux
 - August 15, 2013, 01:26:53 PM
Exactly.  Our allergist was speechless when he dolefully, apologetically told us DD's 7yo RAST results re: egg...  and peanut...   (both class V-- WooHOOO!!!)

I was just so pleased that we hadn't ADDED anything new...  But he did kind of do a reality check since I seemed awfully happy... You do understand that 94 isn't "low" for a peanut RAST, right?  That it isn't really a functional improvement in a clinical sense?



;D
Posted by twinturbo
 - August 15, 2013, 12:45:16 PM
DS1's peanut numbers drive me batty. 2 back-to-back ana at 34. Next RAST 17 just to get me going on the gee, outgrow? train, only to mock me through Sinai's test at over 100. But, bright side is he may be heading towards 'PA-only'. Says a lot about how many allergens wrt quality of life.
Posted by maeve
 - August 15, 2013, 12:36:34 PM
Quote from: CMdeux on August 15, 2013, 10:15:39 AM
YKW-- our allergist waited for a FALL in RAST numbers over a couple of years in order to challenge baked egg.  She was also several years older than your DS1.

DD's numbers were still about 6 kU, though-- so many times higher than your DS1's... but they had at one time been class VI.

DD's egg numbers were in the 9 to 11 range when she had the baked egg challenge.  I'll have to pull out her paperwork at home to doublecheck when I get home.

I have to admit a tinge of jealousy for peanut RAST numbers in the 7 range.  DD was below 100 for only the second time since age 5.  Her number this year was about 67; the previous dip below 100 was 99 and that was probably 4 years ago.
Posted by Macabre
 - August 15, 2013, 10:25:25 AM
DS has been under 8 most of his life. Dropped to a 3 them up to 12 now down to 9 again I think.
Posted by twinturbo
 - August 15, 2013, 10:19:47 AM
DS1's egg numbers are about that with last wheal about 10 mm, I think. We're about to challenge. I don't really pay attention to any allergist's optimism because I'm too jaded. DS1 used to eat egg until he had his first pn reaction then egg became a problem. I don't know if his history of tolerance makes a difference.
Posted by CMdeux
 - August 15, 2013, 10:15:39 AM
YKW-- our allergist waited for a FALL in RAST numbers over a couple of years in order to challenge baked egg.  She was also several years older than your DS1.

DD's numbers were still about 6 kU, though-- so many times higher than your DS1's... but they had at one time been class VI.

Posted by YouKnowWho
 - August 15, 2013, 09:58:28 AM
Ugh, blood test results are in

DS1 - total IgE is 1211  :disappointed:
0.2 for yolk, 2.4 for white
69 for wheat
66 for rye
48 for barley

Dr. said a challenge for eggs is out of the question because he doubts he would pass :(  He has already failed one challenge and DS1 has had serious reactions to exposures (though last one was about 18mo ago).

DS2 - total IgE is 975
7.49 for peanut

These are Lab Corp numbers.  Previous numbers were always through Quest but this stupid insurance doesn't cover Quest.  Of course Quest is running the special on the UKnow test, not LabCorp  :rant:

He doesn't want to challenge at this point but numbers under 8 means he has a high chance of outgrowing.

Gee, can't wait to see the paperwork.  We have been dealing with this for how many years, tell myself we are in a much better place than we were four years ago and yet it still feels like a kick in the gut. 
Posted by CMdeux
 - August 15, 2013, 09:55:02 AM
Quote
What I do at home and what I want school to do are two different things.


Yup!

This is territory that we've covered many times with our (also awesome) allergist. 

Glad that it went well-- and YAY! donuts!!

Posted by YouKnowWho
 - August 15, 2013, 09:51:58 AM
Quote from: MandCmama on August 01, 2013, 02:28:16 PM
Yay on the donuts! Does it make you feel better that at Sweet Freedom, which is a top 8 free bakery in Philly, a dozen costs $44.  :o

A dozen full size donuts is $36-48.  If they don't freeze well, fuhgaddaboutit.  DS2 and I might experiment next week and try to come up with an allergy friendly donut for DS1.  It's like science, right?