Friday, January 3, 2014

What a Year

2013 was not an easy year. In May, my youngest at five months old started to develop eczema. She had already been plagued with Baby Acne and Cradle Cap so we didn't think too much of it at first. People always say they will grow out of it. At six months, with only slightly worse skin, she vomited so violently that I took her to the pediatrician on call. He thought she looked ok but noticed on her growth chart that in the last two months she has lost weight rather than gained. He was concerned enough to send us down to get some tests. The term Failure to Thrive was tossed around. Whatever it was he was looking for came back fine and we headed home and were told to follow up with our regular doctor in the morning.

The next day, when my husband and I arrived at our doctor's office we were brought into his actual "office" rather than an exam room; the place with his desk and pictures of his family. I had been going to this doctor since my oldest was born, ten years ago, and had never set foot in this room before. I don't think many people do. When he sat across from us at his desk, his look was somber. I can still see his face.

The previous day while we were down getting blood tests, he noticed through the doctor/hospital computer system that, during his day off, one of his patients was at the lab. He must have read the concerns of his colleague and perhaps in an 'oh no what did I miss?' moment, he ordered some other tests. In his office he handed us a printout from the computer. Through an IgG blood test and a Google search engine our "doctor" diagnosed our daughter as having SCIDS (Severe Combined Immune Deficiency Syndrome). Ever seen that Seinfeld episode with The Bubble Boy? Um yeah, that.

Let me give you a bit of back story on our doctor, lets call him Dr. S. I had been taking my two older daughters to see him their whole lives, but since they never had a problem and I didn't ask any questions our visits were enjoyable. He actually cracked jokes and was rather charming. With our newest babe and years more of life experience, my husband and I dared to ask questions. When we approached Dr S. with our thoughts or mentioned articles or books we had read he immediately became hostile and treated us with contempt. Dr. S isn't a fan of informed parents.

Over time we realized that we could not have an open dialogue with our doctor. If I even started a sentence with "I read an article" he looked my way with a scowl and most often I received a condescending reply. He is of an older generation where doctors were God and we knew at 65 or so he was not going to be changing anytime soon. My husband and I spoke after every grueling appointment about our need to find a new doctor. With so many doctors in the same tunnel vision mindset we were taking our time, asking around, and doing some research while still going to Dr. S until we could find a doc more in tune with the current times, the era where we can take out our smart phone and look up anything we want.

Okay lets get back to his "diagnosis". The paper he handed us basically said that without a bone marrow transplant our daughter would probably die before the age of two. Even with our new doctor/patient relationship I still trusted Dr. S. I asked him if there could be some mistake and if this test could mean anything else. He replied that he didn't want to give me "false hope". Directly from his office we went down to Children's Hospital for a painful 4 day/ 3 night test fest. SCIDS was ruled out within ten minutes of arriving at the hospital. Apparently when a baby is around six months their IgG level drops when they run out of the immunity they get from their mother and they start producing it on their own. The six specialists we saw basically kept saying "sometimes it is just that BUT other times it's lets do another test." After what seemed to be every test under the sun we arrived home with no answers, but a boat load of bills and follow up doctor appointments. Did I mention Dr. S never once called to check on us? Not once...and still hasn't to this day. (and no he is NOT our doctor anymore).

With no answers to the low IgG level the doctors focused on her eczema. Over the coming months it steadily grew worse until it covered all of her body but her stomach and back. Children pointed in public, one mom described her legs as looking like raw meat, and she was absolutely miserable, waking every 1-2 hours throughout the night. While nursing I cut out every possible food trigger. Their new diagnosis FPIES- Food Protein Induced Enterocolitis immune reaction to foods that thankfully most kids grow out of. So we trudged along, introducing foods slowly, keeping her skin lubed up and covered so she wouldn't scratch.

But the eczema grew worse and worse...until one day it didn't. What did I do that was different? Plenty.

Enter my discovery of Dr. Natasha Campbell-McBribe's book Gut and Psychology Syndrome. Ask any of the specialists I spoke to if they have heard of it....guess what, they haven't. I find that alarming considering that the New York Times recently published articles on gut health. Even more alarming, the gastro doc we were seeing looked at me with a blank expression. Many professions require continuing this not true with doctors?

Dr. McBride's book, called GAPS for short, basically explains that gut health is the root of many problems, conditions, and diseases--in our case my daughter's eczema. Those reading for awhile might remember that I developed eczema out of the blue a couple of years ago. Light going on here, my gut flora became imbalanced due to stress, birth control pills, and antibiotics that I had to take for an infection. When a child is born they inherit the gut flora of both of their parents. If there is an imbalance, they inherit that imbalance. Gut flora is the major regulator of our immune system and allergies like eczema are a result of a malfunctioning immune system. So what do I have to do? I have to heal her gut. No doctor prescribed steroid is going to do that.

In short (ok this was super long!) I have ranted about doctors and told you my story, but I thought it was important to share. If you have gone to multiple doctors and no one can figure out what is wrong with you I suggest you read Dr. McBride's book and look into Leaky Gut Syndrome. One cause, tons of problems for so many. It has opened my eyes.

1 comment:

  1. Hi Natalie...what a coincidence. I have been reading a LOT over the past 1.5 years about food. All things food. There is a strong case for GMO food causing leaky gut syndrome in kids. When I read that BT corn is GMOd to contain the pesticide BT. What it does is explode the insects stomach. It makes sense to me that it children's smaller more delicate stomachs, this could be blowing out teeny little holes in their stomachs. There is corn, almost all GMO, in almost everything we feed to children. I don't eat anything with corn that not organic. Same with all the other GMO foods. Sorry to ramble, but food and health is my passion and I can't stop myself. Hope this finds you and your family well Natalie.
    Erin M