Sunday, December 18, 2011

What do Staci's test results mean?

From the articles I have found on the internet, the IgG antibodies test is simply a screening test. It does not mean that Staci definitely has these allergies. The main point of contention I have, is that while it's true these tests are not fool-proof, they have a pretty high correlation with allergic symptoms. This article states that IgG antibodies to wheat gliadin have a 91% correlation with a positive diagnosis of Celiac's Disease (CD). I found this to be particularly alarming. Then, I read another article that basically says there's a high amount of false positives with this test, but it doesn't state what it considers to be a 'high rate' of false positives.

After receiving Staci's results, I wasn't able to get in to speak with our doctor for almost a week. Let me say this here---> that was a completely crappy thing to do to a mom. You cannot tell someone their 2.5 year old is allergic to everything they are eating and then leave them high and dry for a week. I doubt any doctors read this, but in the event that you do, please take a few minutes out of your day to call your patients when they receive news like this! By the time I saw my doctor the next week, I had convinced myself that Staci, her dad, her grandfather, and a few other people in our lives all had CD.

Based on this one test, we have the option of removing gluten, dairy and eggs from our diets (peanuts have already been removed) for a few months and then doing the blood tests again. This will allow her gut to heal and see if she is following the diet effectively. If the test results came back normal, we would be advised to slowly reintroduce these potential allergens and see how she does. My issue with this is that if Staci does, in fact, have CD, wheat and gluten could never be re-introduced. The tests for CD will not be accurate if you have removed gluten from your diet, so I feel an extreme urgency to find out if CD could be the culprit behind all of Staci's allergies.

IF Staci does have CD, it could be what is causing her other allergies (dairy and eggs). In other words, once her body heals, we may be able to have yogurt, butter, oooh and ice cream again! It is less likely she will outgrow her peanut allergy, but that is less concerning to me.

So, since gluten intolerance and CD run in families, Max and I both had our blood drawn this week as well. We should have those results hopefully before the end of the year. I also had some more blood work done on Staci (which was awful) and we should have those results next week. At this point I don't know what I'm hoping for, but it will be nice to have some answers.

I could go through the 15 other if/then situations running through my head, but for now with Staci we are doing our best to be gluten/egg/dairy/peanut free and will cross the next bridge when we come to it. I will update the blog with her (and our!) results as I receive them.

My kid is allergic to everything

Ok, maybe not EVERYTHING. But honestly? Pretty darn close. Let's start at the beginning.

As a little baby, Staci was a huge spitter. By which I mean, she spit up ALL the time. There was never a feeding after which she did not spit up, so much so I would change my shirt and her outfit no less than 4 times a day. Her spitup finally started to decrease around 7 months old, but even then was pretty severe. I read many places that some babies were just spitters and that she probably wasn't spitting up as much (volume-wise) as it appeared. Looking back, she probably spit up anywhere from 1/2oz-1oz after each feeding. That is probably why I had such an oversupply with her. She never had a problem gaining or growing, and never expressed any discomfort from the spitting so I just figured she loved to nurse and was eating too much, coupled with my super fast let-down reflex causing her to swallow more air than the average breastfed baby. I could never notice any sort of pattern to foods I ate that didn't agree with her because the spitting was so frequent. She didn't seem to have any problems with gas and her stooling patterns were normal to that of a breastfed baby.

There was one food, however, in particular that I could not consume. Chocolate notciably increased her spit up. In fact, if I ate chocolate she did not spit up. She projectile vomited her entire feeding. So, as much as it stunk, I gave up chocolate for the first 10 or 11 months of our nursing relationship. At that point, she had started to eat some solids and I tried it little by little, and she seemed to do ok with it.

Starting solids with her was an adventure. I chose to follow baby led weaning and added in some purees here and there. I quickly learned purees were not good for her, because she would always puke when I put her down for her nap. I just thought it was her normal spitting up, but now I think her stomach just wasn't mature enough to handle the solid foods. She didn't get teeth until she was 13 months old, and that is one of the most reliable signs a baby is ready for solid foods. Basically, I think she just wasn't really ready for solids until then.

Around 8 months old, I let her have a small piece of cheese. She proceeded to rub it all over her face in an effort to get it into her mouth. In a matter of minutes, her face broke out in hives and her eye nearly swelled shut. I watched her carefully for any signs of breathing trouble but no signs appeared. We had an appointment with the chiropractor that afternoon. I remember driving the entire 25 minute trip with my hand touching her, to make sure she was breathing ok and not showing signs of distress. Our wonderful chiropractors gave her some homeopathic remedy for the type of allergic reaction she was having and I do think it helped. From that point on, every time I tried any kind of dairy with her (yogurt, cheese, cow's milk, even goat's milk) she would either puke immediately, or in the event she refused to eat it, would get all snotty and crazy and upset. I thought she was just being stubborn about the yogurt b/c 'people who can't have dairy can still have yogurt'. That may be true for many who are lactose intolerant, but as you will see below, her allergies are to milk protiens.

Finally, around 16 months old, I was eating yogurt and granola (one of the only things that sounded good when I was in the early stages of pregnancy) and she wanted to try it. I hadn't given her any dairy in a while so I let her try it. She did fine! I was so psyched! As things progressed, yogurt became one of her favorite foods. I also found that I could add milk and cheese in small amounts to recipes like meatloaf or meatballs with no immediate or noticable reactions.

Around the same time, she tried peanut butter for the first time. I let her have a small bite of a peanut butter cracker I was eating and she immediately started crying and drooling like crazy. I just figured she wasn't ready for peanuts yet. I let her try it a few more times and every time, no matter how small the bite of peanut butter, she would always cry and/or spit up. As she got older, this turned more violent. I only tried peanuts about 4 times before I realized she absolutely could not have them. I thought I'd wait until she was 2 or so. The Easter before she turned 2 she ate some peanut butter in a piece of candy at a family event before I even knew what had happened. Her reaction was so immediate and so violent I haven't given her any since. She puked 4 times from one small piece of candy. I just kept thinking she would outgrow this reaction as she had seemed to with dairy, which is why I kept reintroducing it. I learned my lesson that Easter.

While all of this is going on, Staci had a rash come and go frequently. At first I thought it was yeast. We cloth diaper so I thought it kept coming back because the yeast was living in the diapers. It was so bad it bled on more than a few occasions. I took her for a second opinion and was told it was bacterial. Each time, the rash cleared up with treatment, so I just figured it was something we would have to battle with her. It didn't seem to matter if we were using disposables or cloth, so we kept using our cloth. And typically, it would be bad for a few days and then fine for weeks at a time. Now, I think it *could* be dermatitis herpetiformis, which is a rash that is associated with celiac's disease. It might not be. Maybe it really is recurrant yeast and eczema. Skin rashes are very difficult to diagnose. The next time we see it we are getting it biopsied to find out for sure.

The most recent time her rash flared, it was extremely dry, almost felt scabby. It covered her entire bottom. She also has keratosis pilaris-like bumps all over the backs of her arms, her legs, and the back of her hips. I took her to the Dr, and asked if we could get some allergy testing done. Our family Dr did a IgG food panel, and we found she has strong reactions to all dairy, eggs, gluten and peanuts.

All gluten, wheat and peanut reactions were in the IV-V range. What do these results mean? I'm going to go more in depth in the next post on what these results mean and what the next step for us is.

I also had some muscle testing done at the chiropractor and she determined Staci had a vitamin E deficiency. She said it seemed more like a deficiency than a toxicity, and gave us some homeopathic supplements (inflammatone) as well as a fish oil supplement. Staci's skin does seem to be doing better with these supplements, but that is not surprising to me as fish oil is really wonderful for your skin. Also, when something or somethings were so obviously affecting my child and her well being, I knew I needed some more concrete, science based testing done.

My head is still spinning a week and a half after we received these test results. More on what they mean and what our next step is in the next post!

Friday, December 16, 2011

Conversation with Staci

Conversation between Max and Staci:

Max: what Tv show did you watch today?

Staci: Curious George!

Max: what other TV show did you watch today?

Staci: the man in the yellow hat!

Max: What's the man in the yellow hat's name?

Staci: Yellow. (proceeds to make her elephant noises)

Happy 9 months Olivia!

I took a little hiatus from blogging but Olivia's milestone has brought me out of hibernation. This month, miss Olivia turned nine months old!! She is crawling all over the place and is impossible to keep still. She wouldn't even sit for her nine month picture! At her nine month well visit, she was 20lbs and 1.5oz, and 29 inches long. 75% for weight and 90% for height.

Dear Olivia,
  At nine months old you are so much fun to have around. You now have 4 teeth, and must be getting more soon because everything you can get your hands on goes immediately into your mouth. You are pulling up and cruising and have already learned how to turn on the TV. You are doing amazingly well with solid foods and will transition to the food your big sister and parents are eating very soon. For now, some of your favorite snacks are apple slices, grapes (peeled and sliced small), veggies from soup like squash and carrots, cheerios, chex, bananas, and avocado smashed on a rice cake. Oh and Baby Mum-mums. You like to eat--and I don't blame you one bit! 
  I love your little laugh. I can't help but laugh along with you when you really get going. Your big sister is probably the person you find the most hilarious, with Mommy and Daddy coming in at a close second. Sneezes and peekaboo are usually safe bets for laughter, but you also like the occasional tickle or belly kisses. Doing 'belly bumps' with Staci are so hilarious you cannot contain yourself, so Mommy makes sure we do those at least once a day!

--You take 2 naps a day, usually around 1.5-2 hours each.
--You are far from sleeping through the night.
--You are still nursing frequently, probably 9-10 times in a 24 hour period, but rarely for more than 5 minutes at time.
--Your favorite toy is anything your sister is playing with. Funny enough, HER favorite toy is anything you are playing with. Funny how that works, even at 9 months old!
--You moved to 9-12mo and 12mo clothing at 8 months old
--With your new pulling up skills, you are now especially interested in the toilet. Yay.

We love you, Olivia! Keep growing big and strong. You light up our lives with so much laughter and love.