The results for Emma's celiac test where negative.
Not sure what to do now.
Sunday, February 13, 2011
**If you are squimish about poop, don't like talking about poop, and don't like to see pictures of poop, you may want to skip this post** (oh, and it is really long, sorry)
Emma's digestive history is like a best seller. It is wrought with suspense, intrigue, humor, and tears.
It all started many moons ago, when Emma was just 6 months old and her poops starting having the consistency of slimy snot. This is the time frame of when she acquired the nickname of "Booger Butt."
After a few weeks of constant blow outs and oozing poo, I started to wonder if something might be wrong. I talked to her doctor, and was told that babies have a tendency to go through phases where things can be loose for a while. I was told to bring in poop samples, which I did, but the poop wasn't talking. The doctor couldn't find anything wrong.
When Emma started cutting teeth (at 7mo), we just figured all the extra drool she was producing was causing her to have runny, mucousy poops.
During this time of snotty poo, Emma and I went to visit my sister, Amber. One day, Emma was hanging out in an exersaucer while Amber and I busted out some karaoke. All of a sudden we could smell something, then hear something, that we knew wasn't going to be pleasant.
Emma had oozed poo all the way down her legs and it had collected in the bottom of the exersaucer. It must have felt like mud between her toes because she was kicking and moving those feet around like crazy!
After the initial, "OMG I am going to throw up!" reaction, we got the camera and started laughing. It is either laugh or cry in these types of situations. Laughing should always win.
This is one of the many reasons I am never going to win the best mom in the world award. It's o.k. I've come to terms with it.
Once back home, things continued as usually, oozing poo and all. By 9mo I was pretty sure this wasn't normal. Emma had also hit a plateau and had stopped growing by leaps and bounds. Up until then she had been well over the 50th percentile for weight and height. At her 9mo check up, she was a lot lower down.
Now, I never really was concerned about what percentile she was in. I didn't and don't care how she compares to other kids. But I do care about how she compares to herself. With this sudden drop in weight gain (yes, she had to slow down some time), I was a little more concerned about her pooping problems.
By this point we had been to see a pediatric GI doctor. It was a long time ago, and I don't remember everything that we talked about, but I do remember the did some sort of scope on Emma to check her out. I thought it had to do with her pooping, later on I began to think they focused more on her reflux.
Needless to say, they didn't find anything.
Eventually Emma stopped having the snotty poo, but her story does not end there. Since then, with no apparent pattern, Emma has fluctuated between hard poop, to diarrhea. I have always had a little voice in the back of my mind telling me that it isn't normal, isn't healthy. I ignored it because the doctors never seemed concerned.
When I would tell them that her poops are so hard that she cry's and screams while squeezing out hands to try and get the poop out, they would just tell us to give her more fruits, veggies, and whole grains. We eat a lot of fruits and veggies and there are very little things in our house that are not 100% whole wheat, or whole grains.
When a few weeks later she has diarrhea for 3 or 4 days, they tell us to give her bananas.
When we go back and forth like this for a few years, you would think a light bulb might go off somewhere for someone.
In August of 2010, Jared and I are sitting on the couch (probably on the computer). Emma calls out from the bathroom, "Mama, can you come in here?" I love my daughter, would do anything for her, but I was not in the mood to sit in the bathroom with her while she pooped. Jared, being the awesome father that he is, took this shift. A few seconds later I hear, "Tina, can you come in here please?"
With a huff of irritation, I get my butt up off the couch and head in there, ready to be annoyed. Then Emma asked me, "Mama, what is that pink thing coming out of my butt?" Jared and I both played it pretty cool while we tried to swallow our hearts, which had jumped up into our throats. "I am not sure what that is, why don't I call the doctor."
It was of course after hours, so I called the nurse hot line. The nurse advised me to lay Emma down on her left side and use a warm wash cloth to gently push the 'pink thing' back in. The nurse also told me that once it starts to go back in, it will just kinda pop back into place.
So, we carried Emma (awkwardly) into her room and laid her on a towel on her bed. Jared read her a story while I held a warm washcloth on her rectum. After a page or two Emma said, "Oh! I think it's back in." She was correct.
Emma had had a rectal prolapse. A rectal prolapse is when a portion of the rectum protrudes from the anus. It looks like a little pink tube sticking out of the butt.
I should probably mention that at no time during any of this was Emma in pain. Thankfully. Just really freaked out. Like her Mama and Da though, she played it just as cool.
We took her to see her doctor the next day. Emma was subject to some unpleasent stuff (like a pinky finger in her little bum), but all that the doctor could figure was that she was constipated and had pushed so hard, she had pushed out some of her rectum. He prescribed a laxative that Emma was to take everyday. Oh, and more fruits and veggies.
Things seemed to be pretty good for a while. We did verbal poop reports each time Emma went to the bathroom, which wasn't always appropriate, but I really didn't care. I did NOT want to have to push Emma's rectum back in again. If she seemed to have to push harder then normal, we did a little extra laxative. If things were going smoothly, we would cut back a little.
During this time, I had started doing research. Everything, and I mean EVERYTHING I read regarding rectal prolapses in children strongly advised to have the child tested for cystic fibrosis. I mentioned it to my doctor and he really didn't seem to think it was necessary. I insisted and he said ok.
Thankfully, the test came back negative, and we never have to worry about that being the problem again.
About a month passed, almost to the day I think, when Emma had a second rectal prolapse. This time more of her rectum had come out. It looked like she had a brain protruding from her bum. (Feel free to insert inappropriate jokes-smart ass, shit for brains, etc-it helps me cope).
I called the doctor who immediately put in a referral for a pediatric GI appointment. After all, he was a family practitioner. Had I been him, I would have done the same thing.
The wait to an appointment was about 2 months, which normally would have been fustrating, but Emma and I had made plans to stay with my sister, Amber (bil Jeremy, and nephews Blake, Greggory, and Tucker) for a few months to help them out a bit. We scheduled the appointment for a few days after we got back from NH.
In the meantime, I wasn't just going to "feed her more fruits and veggies." Emma already eats like a rabbit, plus we started getting lots of fiber loaded foods. I decided to take her off of dairy to see if there where any changes. I knew this would be really hard for her because her favorites foods are mac n' cheese, cheese, milk, and vanilla ice cream. For a 4yo she took it really well. I explained to her that we needed to see if the milk was making her have really hard poops. We talked about it a lot, there where occasional tears when her cousins were eating things she couldn't have, but we made due.
In fact, she surprised me on more then one occasion. One night while we were in NH, I decided that I would have the boys make English muffin pizzas. Even before the diary ban, Emma wasn't a big fan of pizza, so I figure this would be a safe bet. She could have her #1 favorite (PB&J) while the boys had pizza. Emma, however, had different plans. She wanted to make a pizza also. "But Emma, you can't have cheese on your pizza. What will you put on it?" After thinking for a few minutes, she asked, "Can I put some of those little carrots on it and some sauce?" By little carrots, she meant shredded carrots, also a current fave. "Absolutly!"
I had a picture of it, but I think it go deleted at some point :( It turned out awesome and she ate both halves of the pizza.
I also stopped the laxative. Did you know that the more you take a laxative, the more your body depends on a laxative to poop? Not what I wanted for my almost 5yo.
There where no immediate changes, but in the 3 months we where in NH, Emma didn't have another rectal prolapse. We did a poop and food journal just to make sure, but things went well.
At her appointment with the pediatric GI doctor, they took some x-rays, drew some blood, and poked her tummy.
The conclusion? She was constipated. Feed her more fruits and veggies, oh, and give her a laxative. He also told me that she was fine to go back on regular dairy.
Once again, I felt that there was more going on then just constipation. After all, isn't constipation a symptom?
The x-ray did show that she was backed up. When that call came in I turned to Jared and said, "Emma is full of s**t." He looked at me kinda funny for a minute then I explained. Not appropriate, but hey, I am really o.k with not winning mama of the year. Ever.
So I deemed the laxative o.k. for the few days they wanted her to take it so that she would flush out her system. Other then that though, I really hate the thought of giving her a laxative every day.
At her 5 year check up I asked her doctor if he could refer us to a nutritionist for Emma. He said we really didn't need a nutritionist, just feed her more fruits and veggies (are you sick of it too, cause I know I am). I told him I want a referral. Being told to feed her more fruits and veggies isn't helpful and I want to know exactly what foods are best for her.
He wrote the referral.
When we ran out of soy milk, we decided that was as good a time as any to switch back to regular milk. We started with a little milk in her oatmeal (which is how she likes it, cold with milk in it). She seemed o.k, no bellyache, no complaints.
A few hours later, I noticed she had the sniffles. Didn't think anything of it. She didn't have any more dairy the rest of the day. That night, she was really stuffed up, couldn't sleep because she had to blow her nose every 5 minutes. Still didn't think anything of it. Just figured she was getting a cold. With all the traveling we had been doing, I wasn't really surprised.
But she didn't have a fever, and didn't have any other symptoms. The next day she went through a box of tissues. A full box. All by herself. Her nose was raw and scabbing by bedtime. Which was another crappy night of no sleep. The vicks did nothing, but the benadryl seemed to help a little. She was able to fall asleep and sleep for a while.
Once she was asleep, I hit the internet for some research. Turns out that one of the symptoms for lactose intolerance is congestion. So, into the world of lactose intolerance I dived. I read about symptoms, why the body can't tolerate it, got recipes, and absorbed all I could so that I could help my child.
I also discovered that many people who are lactose intolerant also tend to be gluten intolerant. In fact, the gluten intolerance can cause the lactose intolerance.
So into the world of gluten intolerance I dived. I decided the best place to get accurate info about it would be the Celiac Disease Foundation website.
I read all about the symptoms; Diarrhea or constipation (or both), Failure-to-thrive, Short stature, Poor appetite or food aversion, Vomiting, Bloated abdomen or stomach, Fatigue and irritability, Weight loss, Iron deficient anemia, Behavioral changes, Dental enamel defects of permanent teeth, Delayed puberty
They also recommend that children who have, or have family members who have, the following diseases be check for Celiac disease; Type1 Diabetes, Autoimmune Thyroid disease, Down Syndrome, Turner’s Syndrome, William’s Syndrome, Rheumatoid Arthritis, Dermatitis Herpetiformis, Osteopenia/Osteoporosis, IBS, Chronic Fatigue Syndrome, Fibromyalgia, Peripheral Neuropathy, Sjögren’s Syndrome, Eczem
The underlined items are either symptoms Emma has had or currently has, or items that can be found in either her parents, grandparents, or great-grandparents. The only one that is further out is the Down Syndrome, and that is only a second cousin.
A little more research revealed that to be tested for celiac disease or gluten intolerances, you actually have to be eating them. So, there went my plan to try going gluten free to see if it made a difference. If it did and I decided to have Emma tested, she would need to eat gluten rich foods for a few months before the damage would register on any tests. Crazy.
So, I called Emma's doctor last week and asked them to run tests for Celiac Disease. Amazingly enough, there was no arguments. The blood draw was on Tuesday and the test had to be sent out, which means about 5 days to get the results. We should be hearing back on Monday or Tuesday.
Regardless of how the test comes back, we plan to go gluten free for a few months to see if Emma feels any better.
I will post what we find out this week either way.