Yay us!!

Charlie officially has weaned. Not even a nip in the last week. And shockingly, I'm not sad about it.

When Alpha was born I WAS GOING TO NURSE-THANK YOU VERY MUCH. And then I became his mom and it all went to hell in a hand basket. After his rough birth I had a rougher recovery and by the time we got home, 11 days post partum, and I tried to breast feed, he just wouldn't. We tried. A lot. For 8 weeks. Which I know doesn't sound like a lot. But oh, it is. He would cry when he got hungry, I would lift my shirt, get perfect positioning, hold him to my breast, and listen to him shriek like I was killing him. I tried and tried and tried. Then once he was purple and screaming and so hungry and I was bawling I would put my shirt back and get him the stupid bottle and give it to him, resenting the bottle that soothed him, resenting the crappy nurses I had, resenting my body. Then I would get him settled some where, pump, wash the pump parts, wash bottles, change him, and then he would cry because he was hungry and I would get a 20 minute break before doing it all again. And again. And again. So I gave up on nursing and felt like a total failure and then just cried for 6 months. Super healthy, I know. I wouldn't let anybody else feed him because I and I alone was SUPPOSED to be able to feed him. I let Matthew do it because I couldn't say no to him. And it gave me a bit of a chance to rest my poor brain. As soon as Alpha turned 1 I took the bottles away cold turkey and was so happy to not see them again.

Then Bravo was born. Oh cranky, high maintenance, difficult, sweet little Bravo. Carried in his sling for no less than 13 hours a day. He did eventually nurse but it took 17 weeks for him to figure it out. In the middle of the night he would scream for 2 hours instead of latching. But ooooh- I was determined. And I at last found the help I actually needed. My midwife sent me to the best baby chiropractor ever and to the GOOD lactation consultants in the city (we have some pretty bad ones). And finally he nursed. And I was so happy it was working. He self-weaned at 14 months because I was 11 weeks pregnant. And he was as stressed about weaning as he was about starting nursing. Even though it was his idea. Drove me nuts.

SO when Charlie came out and just latched with no effort and never looked back I was shocked. Floored. Delighted.

Which brings me to the point of this post (do I ever have a point though, really??). We nursed for 12 and a half months. I would happily keep going, but he decided he was done. Which makes me happy. I didn't force weaning, he chose it because he was ready. (And because I have no milk because I'm pregnant. Again.) And in that 12.5 months he had a small handful of bottles, like maybe 4 for a total of 10 ounces, and he had no Formula. Zero. Not even one drop. And I am so proud of us. Proud of myself. Not because formula is evil (although formula spit up in the house would make Bravo really sick) but because we did it.  I nursed with no pain, no formula, no medications, no infections, no problems, until he peacefully decided to stop. And that is an amazing feeling after everything I've gone through trying to simply feed my babies. Hopefully Delta takes after Charlie. Delta, are you listening????

So yay us!!!

Allergies. How many hours have I spent thinking of them? Hating them, trying to figure them out, trying to understand them or explain them, worrying about them, trying to figure out how to meet the needs of all family members while keeping little bravo safe? I’m not sure how many hours, but it’s got to be getting up there by now. It was 2 years and 4 months since they came onto my radar. And it’s only gotten worse.

I’m tired of thinking about them, but I just don’t have the luxury of NOT thinking of them. If I didn’t spend so much of my time on them then my baby would not be here. The fun part is figuring out cooking challenges and discovering new non-allergic ways of doing things. The crappy part is, well, everything else.

I’m now losing hope that my boy will outgrow his allergies. Some of them, sure, but not the biggie. Not Milk. And almost for sure not peanuts, but that one is SO avoidable and the masses automatically think ‘peanut” when you say “allergy”.

We got bravo’s allergy results back. He had a RAST test done. Now- this test makes no sense to me.

Radioallergosorbent test. That’s the fancy name for it.

The simple part of it is that all we do is get some blood taken. And then some fancy laboratory voo-doo takes place. They take the allergen and bind it to a solid polymer and add it to the blood. Ok- I’m following so far. In people with allergies there is something called IgE in the blood. Or- immunoglobulin E. Each allergen has a specific IgE that will bind to it. Ok- I’m still mostly following. They watch the blood and the allergen and IgE clump together, they “wash” the blood and just leave the allergen and the specific IgE so that they can do the next part. Which is where they lose me completely. I was OK up to this point, but now…..

A serum of radioactive anti-IgE, which is derived from people who are known to be allergic to the allergen being tested for, is then added, allowing technicians to determine the concentration of allergen-specific IgE in the patient's blood.

Huh? So they take my kids blood, add some milk or soy or egg or whatever to it, swish it around, watch it clump together, get rid of the parts that aren’t clumped, add some radioactive blood from some other person that IS allergic to it and then count to see how much allergen specific IgE is in my kid’s blood to determine where on the scale of allergic he is. Right. I am SO not smart enough to understand this. They may as well be dancing over the vile of blood with an engraved wooden stick. I would understand it to about the same degree. But whatever- it’s not a skin prick test and they can test for a whole bunch of allergies from one blood sample which makes getting bravo tested SO much easier.

So once this scientific voodoo takes place they come back with numbers from 0- >100. Which is then broken down into a smaller scale of 0-6. 0 being “eat all you want, there are no allergen specific IgE present” 6 being “stay the hell away this will cause instant death and a lot of pain and suffering even if you don’t die”. Or something like that. That’s my vague interpretation anyway. Actually- all it says is that 6 is more than 100 of the IgE floating around in your blood. People can have this much and not have a reaction any worse than some hives or eczema. It’s kind of an incomplete test. It needs to be paired with a history and food challenges if the numbers aren’t crazy high and maybe a skin prick test. No allergy test is really all that helpful without a reaction history.

Allergies are SO well understood.

Here’s the really helpful chart.

RAST rating	IgE level (KU/L)	comment
0	< 0.35	ABSENT OR UNDETECTABLE ALLERGEN SPECIFIC IgE
1	0.35 - 0.69	LOW LEVEL OF ALLERGEN SPECIFIC IgE
2	0.70 - 3.49	MODERATE LEVEL OF ALLERGEN SPECIFIC IgE
3	3.50 - 17.49	HIGH LEVEL OF ALLERGEN SPECIFIC IgE
4	17.50 - 49.99	VERY HIGH LEVEL OF ALLERGEN SPECIFIC IgE
5	50.0 - 100.00	VERY HIGH LEVEL OF ALLERGEN SPECIFIC IgE
6	> 100.00	EXTREMELY HIGH LEVEL OF ALLERGEN SPECIFIC IgE

You have to be at least a 3 (or an IgE of 10) for it generally to be considered life-threatening. If the IgE is under 2 (so a RAST level of mid 2 or under) they say that you’re unlikely to have a reaction and you’re good to go for trying a food challenge. For soy, typically the IgE has to be like 50 or something. I don’t remember but it was really high.

So Bravo. His old numbers were: soy- 0.6, milk- 29, egg- 29, peanuts- 8, chickpeas- not tested.

His new numbers are: soy- 1.9, milk- >100 (scary), egg- 19, peanuts- 19, chickpeas- I don’t remember but under 2.

So he has 2 #1s, 2 #4s and a 6. The 6 scares the crap out of me. That’s the one that causes him a reaction from tiny tiny amounts that we can’t see. The one that’s instant death if we don’t have 2 epi pens on us.

The other thing that can happen is a food intolerance. Allergies are immune based. Intolerances are gut-based. Too much of the food and you barf and have the trots and feel generally miserable for a few days (or however long for your particular system). Soy protein intolerance is pretty common in little guys and is virtually always outgrown by the age of 2. Bravo is 2 years and 9 months old.

So they told us that bravo wasn’t allergic enough to soy and chickpeas to be concerned and we could try some challenges. Which is when you go to the hospital allergy clinic and they give tiny amounts of soy milk (or whatever is being tried) in increasing amounts every 20 minutes or so. Good. They do it in the hospital setting so that there are emergency people there if needed. When we started Bravos challenge we were told that there was a 99% chance of there being 0 reaction. Ha!!

2 hours after Bravo’s first dose of soy (he had a total of 3 ounces spread out over 2 hours) he complained of a tummy ache. It rapidly escalated from there. He began throwing up and kept throwing up every 5-10 minutes for 4 hours. After about an hour of the throwing up he went grey and his eyes rolled back into his head and his heart rate went crazy. I picked up my boy, had him draped over my arms, and ran yelling into the hallway. They put him back on the bed and gave him epinephrine and checked his vitals every 5 minutes for the next hour. He was so tired. His little body was just exhausted. He kept falling asleep only to wake up heaving as the poison tried to escape his body. Only there was nothing left in the poor kid.

Once he was out of the really scary woods we had a chat with the allergist and this is what it boils down to for bravo. He’s special. Super duper special. He’s one of the exceptional rare kids who has BOTH a soy protein intolerance and a soy allergy. But his allergy levels are low and he’s too old for an intolerance. Neither should be an issue. So basically what happened is this: he had a reaction from the intolerance he shouldn’t have that triggered an anaphylactic reaction he shouldn’t have and the two combined to become life threatening. Our very very VERY old allergist who has been doing this for, I don’t know, about a million years, said he has seen this only once before. Fun. Isn’t it nice to be special.

The nurses and doctor there were amazing though and really kind and helpful. We’re not challenging chick peas any time soon because we’re just plain tired. And our ethnic background is just about as white as you can get (English, Irish, Scottish, and German) so it’s not like chickpeas are a big part of our diet and we’ve been avoiding them for the past 2 years. Another year or 2 will not really matter.

I’m just so discouraged right now. Until this week I really believed that he would out-grow the milk allergy by age 5. Because 95% of kids do. But it just seems so unlikely now. It’s gotten so much worse and he clearly doesn’t follow the “most kids” rules. Maybe soy will eventually be fine. Maybe chickpeas. Maybe even eggs. At least that one is going in the right direction. Never peanuts. But milk. That’s the impossible one. That’s the one that breaks my heart. Not only because it’s SO dangerous for him, but because he can’t have all these yummy kid things that are served at every party and picnic and play-place. And milk and its products are in EVEYRTHING. I had a vegan once tell me that it wasn’t a big deal. I tried so hard to not beat them in rage. They CHOSE to not eat eggs and milk. And they didn’t also have to avoid most legumes including (but so not limited to) nuts, peanuts, soy, and chickpeas. There are so many legumes we just haven’t tried out of sheer terror. He did outgrow peas, but the rest of it just scares me.

Whoops. This post was supposed to be about de-coding allergies a little bit and it became more discouraged ramblings from a very tired allergy mom. And it got long.