Allergist Appointment

[YouKnowWho]

So we had our annual appt today for skin prick testing.

I am not sure if it was because I scheduled at the satellite office or because school starts this week/next week in our area or if the recent death made it more crazy, but it was insane.  It's rare that we run into more than one family at the appt - this time we were one of three families in the waiting room upon arrival.  Our allergist also split with his partner (amicable parting and he is also one of the few allergists in the area that has raving reviews), so not sure if that had something to do with the craziness.

DH opted to stay home with DD.  I have been honest with DS1 about what the 504 committee has recommended (eating separately and isolated for lunch and snack) so I felt a little better discussing with the allergist in front of him.  But egads, after I left I realized that I forgot to add no rodents in the classroom.  Allergist agreed that rodents in the classroom is a bad idea for DS1, regardless if the school has rodent infestations (which is what the 504 committee was trying to say).  He also agreed that it probably made his asthma worse this past spring as a result (we have never had issues even during the Atlanta bloom where he had to be medicated with multiple puffs before and after recess).

DS1 of course reacted - wheat, rye, barley and egg.  Rather large welts but allergist doesn't make a big deal since DS1 had eczema as a baby.   Allergist is waiting to see numbers but doubts outgrowing is happening on the egg end of things.  He is hesitant to do baked egg dosing until we get better results/research in regards to not developing other allergens.  We are semi-rocking along there so I am okay with it (DS1 less so but he hates that he reacted to eggs and not tree nuts because he actually liked the taste of eggs).

DS2 - reacted (he goes back and forth on reacting, so reacting is always a good thing).  For the most part, DS2 is rocking along with no issues if you don't count the stupid uticaria and viral hive issues that throw a good wrench into things.  We talked about the UKnow peanut test which is currently free through certain labs but it's not a lab which our insurance covers.  Ugh.  He wants to see numbers but is totally amenable to doing a food challenge if they haven't changed. 

I am very happy to hear about a challenge for DS2 - he should have never been tested for peanuts to begin with (chalk that one up to our previous pyschotic allergist).  DS1 will be disappointed if he passes but I told him not to worry, he and I could be in the special freak class together.  I have a warped sense of humor and my kids get it. 

Got our yearly paperwork filled out.  Lots of people calling and asking epi if ingested to be changed.  I opted to do so.  What I do at home and what I want school to do are two different things.  Erring on the side of caution works for me.  I had them do DS2's paperwork as well but will likely not need it this year unless the co-op needs it for homeschooling.

Got the 504 paperwork filled out by the girl who is in charge of 504's.  She has learned what each county is looking for and gave me the advocates number to work with as well.

And DS1 got the ultimate treat today - I found a bakery on that side of town (though to be honest, it was almost a county over), that is a top 8/6 bakery.  They were closed to the public today but I placed a special order for donuts.  DS1 has never had a donut (he is 8.5).  It was $9 for a dozen donuts that are smaller than the powdered covered gluteny two-biters that are normally sold at stores.  But I have to admit they were tasty for being free of the top-8.  DS1 loved them.  (I don't love that the girl admitted they don't freeze well or even last much beyond a day).  I picked up a cup of donut hole bites from Krispy Kreme for DD and DS2 for $1.79 at the gas station that amounted to more food for volume than the ones I got DS1 but everyone was happy.

[Macabre]

YKW that is great your allergist has a 504 person. Wow--that is really forward thinking. 

I'm thrilled that your kiddo got to eat donuts!  That is such a neat thing.

[MandCmama]

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. 

[YouKnowWho]

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. 

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?

[CMdeux]

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!!

[YouKnowWho]

Ugh, blood test results are in

DS1 - total IgE is 1211 
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 

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. 

[CMdeux]

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.

[twinturbo]

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.

[Macabre]

DS has been under 8 most of his life. Dropped to a 3 them up to 12 now down to 9 again I think.

[maeve]

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.

[twinturbo]

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.

[CMdeux]

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?



 

[maeve]

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. 

[twinturbo]

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.

[YouKnowWho]

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   

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!!!