Baked Milk Muffin 4 Months Out, Probiotics, & Chelation

Our daily muffin

So it's been a nearly 4 months since our baked milk challenge and up until about 3 weeks ago, getting my son to finish the muffin was a chore. Mainly, he complained that his stomach hurt or his lips itched. I backed all the way down to 1/4 muffin a day, then I would slowly build it back up. Presently, he's at 1 muffin a day. In all fairness I started giving him digestive enzymes with the muffin about 3 weeks ago, which seems to have been the reason I could escalate it back up to 1 whole muffin. I give him the muffin first thing in the morning with breakfast. But just before, I break open a digestive enzyme cap and pour enough out to fill 2 empty vegetarian capsules size number 3 (one of the smallest). He no longer complains of a stomach ache. In fact, he asks for seconds.

The other thing I've been doing lately is giving him a probiotic. I was experimenting with a lactobacillus mix, but stopped because he got eczema flare on inner elbows and backs of knees. I'm not sure if it was coincidence, since pollen was high as well. However, I temporarily stopped. Although, I have been giving him Gerber Soothe Colic Drops which contain l. reuteri. This is the same probiotic as the BioGai, but licensed to Gerber. (Side note, I have purchased online & via pharmacy - and even in pharmacy, they kept it on shelf, not in refrigerator). At any rate, you can read about the BioGaia research here. My son is not an infant, but a 7 year old - soon to be 8. I give him around 10-11 drops a day. The nutritionist at Gerber, with whom I spoke, said that 100 million would be the dosage for both infants and older. However, I've doubled the dose. We'll see because most of the studies are on infants - but I remain hopeful. And it seems to me completely benign.

Our hair test

A couple weeks back, I did a hair test on my son (the results posted here). I dropped the results with our nutritionist, who said she'd look them over and we'd discuss. Although, her first response - was what do these numbers mean? What do the hair results of the general population look like? Isn't everyone exposed and so wouldn't we all have elevated levels. This is something that I don't know the answer to - and if I get a chance, I'll do a follow up call to the lab.

But, the 2 things I've done & decided are - I've stopped getting our camel milk in plastic and instead been getting it in glass. The cost of the milk has gone up with the added shipping weight - but I feel better about it. Also, in preparation for doing the lose dose Andy Cutler low dose chelation, I've started introducing my son to DMSA. The dose has been approx 6mg that I give 1x a day. We are on 4th day today. While I understand this isn't the recommended process, I want to make sure he can tolerate before delivering around the clock. So far, so good. I'll do it 5 days, then this weekend probably start with DMSA.

What turned me onto chelation is 2 things - 1. there are some similarities in the immune issues in kids with autism and allergy - 2. I read a study that linked arsenic to elevated IgE and asthma. This was a study that was done in India or China - and they found with alpha lipoic acid chelation of arsenic, IgE levels dropped as did severity of asthma symptoms. I'll have to look for this abstract again and post link.

The Baked Milk Challenge

I substituted light olive oil for the canola oil.

So we passed the baked milk challenge. Yay! I am elated, almost to the point of being numb. I tried tweeting from the hospital - to take myself out of the emotions of it - but alas my cell phone signal was kerplunked. My son had coughed in his sleep the night before, so I was concerned he may have been having an asthma issue. He hadn't had the steroid inhaler for a couple days either. At any rate, they checked pulmonary function and it was fine. We also did not do a skin test, but just jumped in. Our time went somewhat like this.

• 1:30 at first dose of 10% of 2 muffin full dose (recipe makes 12)
• 1:50 ish - nurse checked skin, mouth, tongue, lungs, and blood pressure. Second dose - 20%.
• 2:15 ish - nurse checked vitals again, skin.... good to go for third dose - 30%.
• 2:35 ish - vital check again... and the final 40% of the 2 muffins.

My son finished about 2:55. Then we sat and waiting for 2 hours. All clear. And without a valium drip for me. The doctor's recommendation is now to eat the full 2 muffin dose 2-3 times a week. My son of course begged me to have a muffin today, so I gave him one. He is fine, thankfully. The follow up to the baked milk challenge, according to my doc is -

• First we do the 2 muffin dose at least a couple times a week.
• After couple weeks work up to everyday.
• After couple weeks/month of that we can do a couple times a day.
• Then we can try another recipe but with same dose of milks (powdered & liquid).
• After a couple weeks/month then we can try other milk products in baking: sour cream, butter, yogurt, buttermilk... but with the same dose of milk protein.
• Then we can consider, if all is tolerated well, trying something like cheese - but it must not be gooey - more like the bubbled/charred cheese on the edge of pizza crust. Couple weeks/months...
• Then you move to gooey. If all this is going well, then the next step would be coming in for a liquid milk challenge.

Well at this point, we are happy to have an additional food. But it must be at this point, and all points until gooey - cooked at 375 for at least 20 minutes. From what I've read, the studies about baked milk - under-cooking can be a problematic thing. I think we'll be sticking with the baked milk muffin recipe as is - with it's 20 minutes at 400. I don't love this - well because from what I've read, the browned part of food can be a big contributor of AGE's. But we went through with the challenge, so for now - we're dealing with eating it.

Hercules, Food Allergy, and the Baked Milk Challenge

BAKED MILK CHALLENGE MUFFINS

My son is learning about the Greek and Roman Gods and myths. And Hercules is one of them. When I thought of Hercules it was - 'super strong muscular dude who slayed mythical dragons, animals, and warriors." Like Yanni on steroids in a loin cloth or something. Boy did I underestimate his journey. Well, and I did not know this until my son introduced me to it. But, Hercules wasn't just some swoony cat living his life randomly encountering adventures, slaying dragons, taming wild lions... He sought these 'beasts' out. He was compelled to carry out his nine labors because he was trying to make amends for having killed his wife and children while under a spell. He was driven, beyond reason, fatigue, fear... to confront and slay these wild creatures.

Ok, but what does he have in common with food allergies?

 

Well, that's how I feel. All my friends and family are always telling me how I shouldn't/couldn't possibly blame myself for the allergies and asthma that my son battles. But somehow I do. I have running list of 'sins' I committed while pregnant - before I was pregnant - and in my darkest moments I visit this list in my mind. I cannot explain our somewhat 'outlier' status any other way... the number of allergies. The eczema. The asthma. The whole ball of it. I mean, of course there are more and more kids with allergies and asthma, but I feel sometimes so singled out with the sheer number - that surely I must have done something. And it's been this feeling that drives me on - like Hercules - beyond reason, fatigue, fear... beyond my check book... to find some answer to heal my son.... or at least gain new foods, freedoms, hope and ease.

Sigh. Sigh. Deep breath.

 

As you can tell it's been a bit of a dark feeling time around here. And tensions are high as we near our baked milk challenge scheduled for tomorrow. I was disappointed to find out that my son's IgE level for milk is up to 22 now on the RAST. Total IgE is up to 1400 or so now. We are about 6 weeks off the herbs - and eczema has been plaguing us again. We are up and down on the steroid inhaler - based on whether or not he coughs. Given the new RAST, I was concerned that we were beyond the challenge window now, however the doc says we are still on. After reading this study "Tolerance to extensively heated milk in children with cow's milk allergy" I am also feeling as if our number is still within range. However, I may request a skin prick test. It seems that the size of the wheal would give us a better sense of whether or not he'll pass. Although, part of me feels that even if he fails - there is an upside - my son would know what a reaction feels like. He hasn't had a reaction, thankfully, in a long time. We've had some itchy tongue, itchy lip things, some hives - but our last challenge - soy, was our last reaction. He remembers this reaction. It involved him vomitting and getting pale and somewhat limp. While the doc present at the challenge said it was FPIES, another doc to whom I conveyed the story ipso facto - said it sounded like anaphylaxis. Whichever, that was our second soy challenge. The first one - a year prior - was deemed successful. We left the hospital overjoyed to get a new food. And then midway between the hospital and home, the vomitting and screaming started. Needless to say, we pulled into the ER.

But milk. Milk has been verbotten all along. So we'll see how tomorrow goes. I definitely think that when your child does a challenge, you should be offered an optional valium drip for yourself. I'll take mine straight up please.

 On another front on the allergy front - I'll be ordering TSO this week. I have to wait for a check to clear before dinking my account. But I am now solidly convinced that this is worth a go. I'll enter in the quasi paper I sent the allergist - who is on board to treat my son - and issue blood test/skin prick test to help us determine what effect, if any, the TSO is having. Although she would not let us introduce them in the clinic because of liability issues. Not sure yet, how I'll introduce the 15ml vial of 1000 ova (our recommended starting & hopefully maintenance dose). I guess like Herecules, I'll slay that bitch when I get to it.

Also, and for good measure because I tend to be somewhat pessimistic, I have a vision of my son healthfully eating the baked milk muffins. We drive home happy that we have a new food. And I try not to drink each time I feed him this food moving forwards.