Welcome to my blog!

This blog is a journal of our struggles with food allergies and eosinophilic gastrointestinal diseases (EGIDs). ("DD" stands for "dear daughter", so whenever you see it in the blog it is referring to my daughter and our personal experience.) My hope is for this blog to be a source of information and support to others who might be trying to investigate, diagnose, treat, or live with, food allergies and EGIDs. Feel free to leave comments with suggestions or requests of what you would like to see on this blog. This is a work in progress. :)

Months 18-20

March - May 2009

I know, I know... I'm way behind in my blogging. We're getting ready to buy a house, so things have been a little crazy around here. I'm going to try and quickly write an update, but I will apologize in advance for it being so scattered. :)

After our lovely few weeks at baseline in January, and then our frustrating decline in February, things are finally looking up again. I don't know what happened to cause the decline, or how we've reversed it, but we're finally back at baseline again just in the past week (end of May.) I'm trying to be hopeful that we can continue the trend. DD had completely fallen off the growth charts again (hadn't gained anything, actually lost a couple ounces, since January), but finally had a growth spurt a couple weeks ago. She's also finally popping out some new teeth. I think it's because her body is finally getting a rest from the allergies, so it can focus on growth and maintenance.

We've had 2 (possible) anaphylactic reactions during this time. :(

Ana reaction #1
The first was in March, when I gave DD a few pieces of pineapple. I'm not positive this was an anaphylactic reaction, or if it was an OAS-type reaction (even though I can't find pineapple on any of the oas common foods lists.) She had pineapple when she was younger, and it seemed to flare up her eczema (but it was hard to tell if it was a reaction or just the acidity of the food). She really loved it though, so I wanted to try again. I cut a few very thin, quarter-sized pieces for her. On the 3rd piece, she started making a weird gagging noise and kind of spitting/foaming at the mouth. At first I thought she was actually gagging, or her airway was closing or something... but then it seemed like she was just making a lot of extra saliva and was trying to get it out of her mouth. Almost like she was trying to clear her throat and didn't know how. She coughed/spit out a bunch of saliva and seemed better when I gave her some water. Then she wanted to nurse, but she didn't seem able to latch on and got really upset. She finally latched on and nursed for a bit, then fell asleep (it was naptime.)

It was very frightening, but luckily didn't require any medication or epipen injections. I still had a prescription for some compounded (corn-free) benadryl that I hadn't filled, so I went straight to the pharmacy and got it filled just in case we had another episode like this one. And if anyone is curious how much a compounded prescription for generic benadryl (with a pine cellulose filler, no other ingredients) is.... it's about $50. Yeah. Seriously. But at least I talked them into doing capsules for me instead of the liquid, because they are good for 6 months (the liquid is good for ONE.)

Ana reaction #2
April was a rough month. DD reacted to both our apple and banana trials, and was still healing from those when we had another anaphylactic reaction. We still do not know what caused it, which is very frightening. All of the foods we ate that meal (lamb, broccoli, carrots, rutubaga) had been eaten many, many times before. The only thing I can think is that it was cross-contamination, either on the rutubaga (maybe a corn-based wash or something) or on the lamb. (We recently learned that our grocery store does NOT clean the machines between cutting different types of meat. Needless to say, I was pretty shocked... and now I have to call ahead and have them cut my meat first thing in the morning on clean machines.) Shortly after dinner, DD's top lip started to swell. I was panicked, but tried to remain calm. I was VERY glad that I had filled our benadryl prescription. I broke open the capsule and mixed the powder with some previously cooked blueberries, and DD ate them right up. The swelling stopped, and we didn't see any signs of breathing problems, so we let her go to sleep but watched her very closely that night.

I'm now very vigilant about carrying our epipens everywhere we go, along with vitamin C and pascalite clay (both of which can lessen an allergic reaction and help clear the 'toxins' out of the body.)

I'm focusing now on replenishing my nutrient stores from being on such a limited diet for so long. I'm also using supplements to try and open detox pathways, aide digestion and get my immune system back up to par- specifically B vitamins like methyl-b12 and 5-mthfr (folate), zinc, vitamin D, vitamin C, and others.

Again- sorry for the short, rambly post... hopefully after the move is done I will keep up on my blogs better. :D

Hope everyone is having a fantastic spring and not suffering too terribly with seasonal allergies!


Ruth said...

Thanks for the update - hope all goes well with your house purchase. As a mother of a very allergic child, I'd be very interested in what your child can eat - could you post a quick food list? Also, my 8 mo. DD is hyper-sensitive to corn and I have tried vitamin C supplements derived from cassava and sago palm that cause an instant reaction to a few grains. They were buffered and contained cal/mag, so not sure exactly which component caused the reaction. What Vit C supplement do you use for your DD? I'd love to find one that works. My baby is eating Metagenics Ultracare for Kids with rice milk and coconut milk, but reacts to almost every other thing I've tried. I'm really grateful she can eat at least that! Enzymes and probiotics and chiropractic have helped and now she can eat a little bit of pears or butternut squash if I she has a few ounces of her formula mixed with enzymes just before. Thanks again for your story.

Jessica said...

Sure- I will try and post a June update soon and put our current food & supplement list there.
I'm surprised that your little one tolerates a formula if she is that sensitive to corn. Which formula do you use?

Ruth said...

There is no commercial formula she can eat because they all contain corn, milk, or soy. The Ultracare product does not contain any of these and is supposed to contain the least allergenic types of vitamins, etc. The protein it contains is from rice. Ultracare is not for supposed to be for babies,(it's a meal replacement product for allergic kids on an elimination diet) but I worked with a nutritionist to get the right ratios of protein, fat and carbs. I add the rice milk for carbs & calcium and coconut milk for fat. I must say I'm very grateful for the product! My dd is just over 50% for weight and about 75% for height. I would very much like to see her eating food, though, but I'm not stressing about it anymore.

Jessica said...

Oh- very cool. I'm glad you found something that works for you!