Tuesday, July 6, 2010

Never underestimate the power of mothers intuition

I've come to a couple of glaring realizations in the past week. One is that if you want things done with military drs. you HAVE to be persistent and even fight with them. The other is that no one should ever underestimate a mothers intuition. While I type this I'm half relieved and half pissed off. I just really feel like there is NO reason it has taken 5 years to find out why my son has had severe skin issues that has never been able to be cleared up, low weight (in the 3% until he was almost 2 regardless of how well he ate), very dark circles under his eyes, irritability and random stomach upset. Last week, a blood allergy test done for 2 allergy groups came up that Cameron has a high allergy to Soy, Rice, Barley and Buckwheat. These are in foods he eats every single day, especially soy. This was a simple blood test that took a whole whopping 10 minutes from start to finish to get his blood and then 2 days for the results.

Cameron's skin issues started at 4 months old, looking back, that was when he was switched to soy formula because of his bad reflux. Over the past 5 years I've been repeatedly told it's just severe eczema, despite the fact that creams, lotions, steroids, allergy medications, all natural skin products, all natural/chemical free detergents etc. were not clearing him up. Now and then it would improve, but it has never fully cleared up no matter what we did. He's been to the dr. for his skin issues alone at least a dozen times and it was always brought up at every check-up as well. On several occasions I've suggested a possible food allergy and was told I was wrong every time. In the past 6 months I finally put my foot down and refused to let the drs. dismiss it anymore. He's progressively gotten worst, to the point now where he is broken out in an itchy, dry, painful rash from head to toe and his eyes are so dark he looks like he doesn't sleep. We finally got them to give us a referral to a dermatologist and allergist. This Tricare provider allergist obviously isn't top notch, since they only diagnosed his grass allergy. After several visits to both the dermatologist and allergist and us doing every single thing they told us from antibiotics and steroids to olive oil in his bath and allergy medication and him showing no improvement whatsoever, I made another appointment with the pedi, went in there and insisted on a blood test for food allergies. A few friends suggested I specifically mention a gluten allergy, so I did. She reluctantly sent him for the blood work, but said she didn't think that was it. She just sent him to appease me and that's perfectly fine. Why wasn't this done before to at least rule food allergies out??? Because they are lazy drs. who don't really care about their patients. Instead they wanted to pump him full of steroids that didn't do anything and completely dismissed my feeling he had food allergies. I just hope this is all of his allergies. They did only test for 2 groups.

So here we are, we FINALLY know he has these food allergies. Let me tell you, Soy is one allergy that is a challenge. It's is a SO MUCH food. Don't fool yourself and think it's only in junky packaged foods, it's in a lot of perfectly healthy food as well. Looking at labels of what we all eat here, we had to make a drastic change in what we're buying. Simple things like tuna, we had to find some without soy and that meant we got the solid white albacore select fillet (we always bought albacore, just not the select fillet type), which is more expensive. BREAD, lets talk about bread. Go look in your kitchen, I bet your bread has soy in it... and possibly buckwheat or even barley too. We had to go to Earth Fare to find bread and even there, we only found 2 different types that did not have soy or the other things he can't have. One was $5 a loaf and the other $7 a loaf. We bought the more inexpensive one for just him, we can't afford for everyone to eat that bread. I am going to have to start making my own bread. We have had to change probably 85% of what he eats because of his allergies. Some things he can't have at all and others we have to
read labels and search for alternatives.

I'm hopeful that he will finally start feeling better. I'm frustrated that it took this long to diagnose him. I've lost the last bit of faith I had in these drs. with this. I've had a lot of problems with the drs. dismissing my health issues... now my son. It is sad to me.

I am going to make myself an expert at this food allergy thing. I have to.

Let me just add a little disclaimer here... This is just MY feelings based on MY experiences with military drs. and facilities.


Slee said...

you need this book. request it at your library. Artisan Bread in 5 minutes a day.

Also, if you have a bread machine, it's not horribly difficult to make your own breads.

I love baking bread. love love love it.

Good luck. The good news is over time you'll get used to what you can and can't buy and you'll stop having to read labels so hard and eventually you'll stop looking at the stuff which you know you can't use. It gets to the point where you don't even see it on the shelf and your brain just filters it out as "not food."
and props to you for trusting your gut.

Unknown said...

i just wanted to say i enjoy reading your blogs and i too am planning to have a big family. also i agree military hospitals and drs suck. thats why im on tri-care prime and take my daughter to a civilian Dr and i also go to a Dr off post.
love the blog