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Hmmmm, nuts . . .

Little D had an allergist appointment a few weeks back. It was actually to talk about asthma (which he does not have an official diagnosis far yet as he has not had three episodes BUT our allergist says she is pretty sure he has it). However, I mentioned that we were not doing any baked foods because it was so hard to find gluten-free flours that did not have tree nut contamination.
Soooooo, our allergist decided to run a blood test to see if Little D was, in fact, allergic to tree nuts. Usually, when you have a peanut allergy it is recommended to stay away from tree nuts for two reasons: 1) many people with peanut allergies also have tree nut allergies and 2) it is very hard to find safe tree nut sources as most are contaminated with peanuts. Still, our allergist thought it would be good to look into it because the benefit of adding nuts to his diet could outweigh the risks.

Hence, Little D’s first RAST blood test results!
Before I give you his numbers, let me give you the breakdown of how they are rated.
Class 0 <0.35 (no allergy)
Class 1 0.35 - 0.69
Class 2 0.70 - 3.49
Class 3 3.50 - 17.49
Class 4 17.50 - 52.49
Class 5 52.50- 99.99
Class 6 >100

The thing about this class system is that it does not correlate to the SEVERITY of a reaction, only the PROBABILITY. The higher the class, the higher the likelyhood there will be some sort of reaction. So Class 6 does not mean you will have an anaphylactic reaction, only that you are pretty much 100% likely to have a reaction. It could just be a hive. Of course, this also means that a Class 1 reaction could be anaphylactic.

Okay, so Little D’s results:
Total IgE (which corresponds to his general allergic level) - 118 (normal is 0-89 so his number is high BUT the nurse said she’s seen numbers in the thousands before so, you know, it’s not the worst ever)
Sesame - 1.72 (Class 2)
Peanut - 75.20 (Class 5)
Chickpea - <0.35 (Class 0)
Almond - <0.1 (Class 0)
Brazil - 0.10 (Class 0)
Cashew - 0.15 (Class 0)
Hazlenut - <0.1 (Class 0)
Pecan - <0.1 (Class 0)
Walnut - <0.1 (Class 0)

Well, as you can see, based on the numbers, Little D has no tree nut allergies. And this is pretty accurate, although the RAST test has a higher chance of false negatives (the skin prick test has a higher chance of false positives). So, I admit, I am a little nervous to actually try feeding him something with nuts in it (after carefully making sure they are a safe tree nut source and have no peanut contamination). It didn’t help that the nurse’s actual words were, “You can introduce nuts cautiously and you have an EpiPen.” Oh! We have an EpiPen. Okay then! Geez. Hone and I have decided to take it slow. We haven’t changed anything yet. We are pondering adding nuts at some point. We’re just waiting until we feel more comfortable. Also, I mentioned a few posts back that Little D has a serious speech delay (I’ll get into that in a later post) which also makes me more nervous to add a food he *could* have a reaction to because he is not able yet to say, you know, “Hey, my throat feels funny and is swelling up!”

Oy! This allergy stuff gets more confusing. Still, I have come out of these tests feeling better. Seeing negative numbers has made it seem more managable. And we are hoping that his sesame number stays low and maybe drops more in coming years. The fact that it is below 15 means he has some chance of outgrowing it, although, his only reaction so far has been to sesame AND was a stage 1 anaphylactic reaction. The peanut number is very high and it is less likely he will outgrow it. It’s possible but less likely. But if he COULD outgrow the sesame it would be great. The sesame allergy is the hardest, frankly, because it is not recognized as a top allergen and nothing has to be labelled. Managing a peanut allergy is easier.

Food Allergy Baby (Food Allergy, Baby?)

So, where to start with the food allergy stuff?

Baby D has always been a picky eater.  He was completely uninterested in solids until well after his first birthday.  And then he did not really start eating food until he was about 15 months old.  At that point he would eat a smidge here and a smooge there and nurse nurse nurse until the cows came home.  Last fall we found out he was gluten intolerant, likely a celiac.  And me too.  I got very sad and railed against the universe for the unfairness of it all.  I mean, Baby D would never get to eat a croissant!!!!

Now I wish the gluten was all we had to worry about. If we could go back to those days of JUST gluten intolerance I would embrace gluten-free living and knit it a sweater. I mean, gluten intolerance is annoying and not good. It can drastically affect your health if you keep eating gluten. BUT it cannot KILL YOU IN A MATTER OF MINUTES. You know?

Oh I am getting ahead of myself.

So this past March Baby D was occasionally trying little mouthfuls of our food at dinner. One night I gave him a tiny amount of hummus. I mean tiny. Like a fingernail sized blob on the end of my fork. He ate it. Came back for more. I gave him another mouthful. He ate it and promptly vomited. A huge vomit. I thought he had gagged on the hummus. Or maybe the garlic was too strong. We stripped him down to his diaper and he started nursing. A few minutes later he broke out in hives around his mouth. And he was acting upset. Walking around aimlessly and crying. This is when Hone and I got scared. I managed to get a little Benadryl in him and paged our doctor. While waiting for her call he had another huge vomit and it trailed down his little chest onto his diaper and leg. Everywhere the vomit touched he broke out in hives. Our doctor called right then and as I told her what was happening, holding Baby D on my lap, the hives started to vanish. And he stopped crying and started running around laughing. Our doctor said the worst had passed and that she thought he probably reacted to the garlic. I asked about chickpeas and she said maybe try feeding him plain chickpeas in a few days and seeing what happened.

I must interrupt my own story here to say: AWFUL ADVICE!!!!!! If you think your child is having a violent reaction to any food DO NOT FEED IT TO THEM! GO TO AN ALLERGIST!! I have since found out that Baby D’s reaction to the hummus was a stage one anaphalactic reaction and we were very very (VERY VERY VERY) lucky that he did not progress to a later stage. Should he ever have a reaction like that again we are to jab him with an EpiPen immediately and call 911. Seriously. What was our doctor thinking??

But she downplayed it and we did not know any better at the time. And Baby D was fine the rest of the evening.

Still, for the next few days I was unsettled and finally called our doc and asked for a allergist referral. I told her the intensity of his reaction worried me. She gave me a referral and we set up an appointment for April. That appointment was cancelled when Baby D wound up in the hospital with breathing problems.  He was rescheduled for May.

Finally we got to our appointment.  The allergist said his reaction was definitely an allergic one and she ran skin prick test.  Here’s a photo of Baby D’s results:

skin prick test

The two large welts in the center are sesame and peanut.  The medium one on his  left shoulder blade is dogs.  He also had a positive reaction to cats and two kinds of dust mites (you can’t see them very clearly in this photo).  He came up negative for garlic, lentils, peas and pine nuts.  They do not have a skin prick test for chickpeas at this allergist so we were not able to run that one.  But the allergist said most of the time a reaction to hummus is a reaction to sesame. 

So sesame and peanut.  The allergist also said to stay away from tree nuts and next year we’ll run blood tests to see where his numbers are at for all the allergens.  She gave us a prescription for an EpiPen Junior and a bunch of pamphlets. I left the office feeling shocked and nervous.  I got home, read up more on food allergies, and got very scared. 

Like the gluten stuff, it’s not as easy as it seems.  It’s not just about avoiding a particular food in its most basic form.  If we just had to stay away from peanuts and sesame seeds it would be okay.  But the biggest danger is in cross contamination.  And let me tell you, sesame sucks in this respect.  Sesame is not considered one of the top 8 allergens so no one has to label for it.  It is actually as potent an allergen as peanut, meaning a miniscule amount can cause a reaction.  So Baby D could eat something with a spice in it that was manufactured on equipment that also processes sesame and he could have a reaction.  A single sesame seed could jump plates at a restaurant, wind up in his food and he could have a reaction.  His next reaction could be the same or worse.  We must carry his EpiPens at all times and be prepared to use them.

Lame.  Terrifying!  And Lame.

I have been so depressed about it.  But I am finally coming out of it.  I am determined to stop letting the fear make me crazy and to stop feeling so helpless and sad about it all.  I mean, this is his path so we are on it.  And I have hope.  He has a tiny chance of outgrowing these allergies.  There could be a cure.  If not, we can learn to live with them.  I have to show him how to be brave and take care of himself and that his life is still full of limitless possibilties.

Oh, and I so need to learn how to cook.

It's been FOREVEH!

Okay.  Okay!  So I have been the worst blogger ever.

I have not posted in ages.  In trying to tweak my blog I wound up deleting it (for months) and so on and so on.

I do have a good reason for my absence, though.  Sort of.  I mean, it’s been a really rough few months here.  Lots of difficult things going on with Baby D.  Health stuff.   It started with my last post back in May about our bad virus/possible asthma/hospital debacle and the rough stuff has not let up. 

There have been lots of wonderful things too, of course.  He is doing well despite all the issues and everyday is full of amazing developments. 

Here is a quick catch-up of the last few months.  I will elaborate on each bit in separate longer posts soon.

1) After a scary reaction to hummus and a trip to an allergist we found out that Baby D has some life-threatening food allergies (on top of his gluten-intolerance/probable celiac disease).  He also has some environmental allergies which could exacerbate his possible asthma.

2) Baby D has a wicked speech delay (as in not talking at all yet).

3) We sent our dogs to live with my parents (see #2).

4) Baby D turned 2 in June!!!

5) My little brother and his wife had their first baby in July!!

6) I have been a bitter, negative basketcase BUT am starting to rally and look for the silver lining and even have some crafty plans.

SO, here I go again!