I don't want to sound paranoid, I'm not that concerned about it at this point, but I wanted to write it down.
Last Saturday at a social gathering Barrett exercised such great self-control for the most part. I was very proud of him. He was hovering over the cookies and cheese crackers with such longing, but he would just look up at me and say, "Those will make you sick." However, you can only expect so much self-control for a two year old. After about 30 minutes he snuck under the table and was eating the crumbs of some smashed cheese crackers.
We saw the usual contamination symptoms: stomach ache, diarrhea, diaper rash (his poor swollen legs!), runny nose/cough, bloating, meltdowns, etc. But I also noticed times when he would just stare off into space an appear not to be aware of anything for several seconds. Then he would just go on as if nothing had interrupted what he was doing. Just yesterday he had been crying because he got a sliver in his foot. My husband was holding him and then he just stopped for several seconds and was staring into space. I was snapping my fingers right in front of his eyes and he wouldn't blink or anything.
I don't want to jump to the conclusion that these are seizures, but the certainly could be. It's something that I am going to watch closely and keep in mind though. I'm not sure if there is a link between that and celiac or not. If anyone knows anything about it though, please comment! (It only seems to happen if he is contaminated).
Showing posts with label rash. Show all posts
Showing posts with label rash. Show all posts
Thursday, June 25, 2009
Sunday, March 29, 2009
The Baby Definitely Has A Food Intolerance Problem
It is now obvious that Abbie has a problem similar to Barrett's. Her diaper rashes and diarrhea the last week have been sure evidence. Unfortunately I can't pinpoint the exact cause yet. We started giving her more milk products like yogurt and cheese, and I also have been slack on my own gluten-free diet. It's possible the gluten from breast milk is bothering, or the increase in cow's milk has been bothering her, or both. So now we get to start the elimination process with her. Keep those things out of her diet for a few weeks to see if she improves, and then add them back in one at a time and see what happens. I already suspected gluten which is why I don't feed it to her directly, but my current theory is that both are a problem. I know for sure that she can't tolerate eggs at this point. She and Barrett both had a hard time the last time we fed eggs to them. I'm not even going to attempt soy with her if she can't have casein.
Wednesday, March 25, 2009
Oops! A Little Cow's Milk
Last weekend we left Barrett with a babysitter. We made the mistake of assuming she would remember from last time that he couldn't have gluten or milk since her sister has the same problem. Never assume anything. We came home to find a sippy cup with the last dregs of cow's milk in the bottom. (It was in the morning). That night at about 2 am Barrett woke up screaming, "poopy diaper!" Now I know how long it takes for a contaminant to affect him. I've changed a lot of diarrhea diapers since then. Today is the first day he hasn't had one...yet. Hopefully it has cleared his system by now. I felt so bad about it. He never complained about his stomach hurting though, and it didn't seem to affect his personality, which is good. Just diarrhea and diaper rash. Those contaminated diapers sure smell bad though!
We have finally ordered the protein drink the doctor recommended. I couldn't find it anywhere in stores and they changed the name to Regence Boost Fruit Beverage so it took me awhile. It also has whey protein from cow's milk and I wanted to make sure that wouldn't bother him before I forked out the dough. I bought some Special K protein water that has whey protein in it to test it out. It didn't seem to affect him so I went ahead and ordered a six pack of the Boost. Hopefully it won't bother him either because he really needs the nutrients. His fingernails are still peeling.
We have finally ordered the protein drink the doctor recommended. I couldn't find it anywhere in stores and they changed the name to Regence Boost Fruit Beverage so it took me awhile. It also has whey protein from cow's milk and I wanted to make sure that wouldn't bother him before I forked out the dough. I bought some Special K protein water that has whey protein in it to test it out. It didn't seem to affect him so I went ahead and ordered a six pack of the Boost. Hopefully it won't bother him either because he really needs the nutrients. His fingernails are still peeling.
Sunday, January 11, 2009
Signs of Contamination
There are 8 things we watch for to see if Barrett has been contaminated:
1. Behavior. Shortly after he eats something bad he becomes a basket case. My sweet little boy turns into a nightmare. He whines because he can't zip his jacket up and when you help him he cries because he wants it off. He quits paying attention to what he's doing so he trips a lot. Normally when he trips he says, "I fall down," and goes on his way, but when he is contaminated he sobs and sobs or else throws a tantrum. There are also times when I suspect seizures--he blanks out and doesn't respond for 10-20 seconds, but I can't tell if he's just spacing off or if they are really seizures.
2. Sleep. He usually wakes up several times in the night afterward. Sometimes with a poopy diaper or upset stomach. But sometimes he just gets up and plays and talks to himself and gets really hyper.
3. Diapers. We pay attention to a lot of things with diapers. Frequency, volume, content, smell, and acidity. He usually has 4-5 bowel movements after contamination that are large in volume, contain undigested food--and smell absolutely horrible! They are also very acidic but I'll get to that in the next one.
4. Diaper rash. His diapers after contamination are usually pretty acidic and he gets burn rashes all over. He usually tells me his "bum hurts" immediately after passing a BM. It's difficult to clean off and usually requires rinsing with water so it doesn't continue to burn him.
5. Stomach Cramps. This can be hard to tell. It was a relief when he finally learned to say, "Stomach hurts!" so I knew for sure. I think when my baby gets stomach cramps she just cries out suddenly or twitches side-to-side a lot. She is also really gassy and often gasses or burps after she has been twitching or crying out. I am assuming the reason is that it hurts her stomach.
6. Bloating. Sometimes after he eats food he shouldn't his stomach bloats, but not every time. I haven't been able to figure out at what point it bloats or what exactly causes it. It's just something we have seen happen on more severe contaminations.
7. Eczema. After being contaminated sometimes his eczema on his ankles flares up. I haven't noticed it lately though. My theory is that we've finally managed to eliminate all of the allergens from his diet. Hooray!
8. Loss of Appetite. After contamination Barrett rarely asks for food and usually refuses it when we offer. If he does it it's only bites of what is given him. It used to stress me out because he is so skinny, but I learned that he doesn't digest the food anyway. It just comes out in his diaper and gives him cramps and a rash so he is better off not eating much.
1. Behavior. Shortly after he eats something bad he becomes a basket case. My sweet little boy turns into a nightmare. He whines because he can't zip his jacket up and when you help him he cries because he wants it off. He quits paying attention to what he's doing so he trips a lot. Normally when he trips he says, "I fall down," and goes on his way, but when he is contaminated he sobs and sobs or else throws a tantrum. There are also times when I suspect seizures--he blanks out and doesn't respond for 10-20 seconds, but I can't tell if he's just spacing off or if they are really seizures.
2. Sleep. He usually wakes up several times in the night afterward. Sometimes with a poopy diaper or upset stomach. But sometimes he just gets up and plays and talks to himself and gets really hyper.
3. Diapers. We pay attention to a lot of things with diapers. Frequency, volume, content, smell, and acidity. He usually has 4-5 bowel movements after contamination that are large in volume, contain undigested food--and smell absolutely horrible! They are also very acidic but I'll get to that in the next one.
4. Diaper rash. His diapers after contamination are usually pretty acidic and he gets burn rashes all over. He usually tells me his "bum hurts" immediately after passing a BM. It's difficult to clean off and usually requires rinsing with water so it doesn't continue to burn him.
5. Stomach Cramps. This can be hard to tell. It was a relief when he finally learned to say, "Stomach hurts!" so I knew for sure. I think when my baby gets stomach cramps she just cries out suddenly or twitches side-to-side a lot. She is also really gassy and often gasses or burps after she has been twitching or crying out. I am assuming the reason is that it hurts her stomach.
6. Bloating. Sometimes after he eats food he shouldn't his stomach bloats, but not every time. I haven't been able to figure out at what point it bloats or what exactly causes it. It's just something we have seen happen on more severe contaminations.
7. Eczema. After being contaminated sometimes his eczema on his ankles flares up. I haven't noticed it lately though. My theory is that we've finally managed to eliminate all of the allergens from his diet. Hooray!
8. Loss of Appetite. After contamination Barrett rarely asks for food and usually refuses it when we offer. If he does it it's only bites of what is given him. It used to stress me out because he is so skinny, but I learned that he doesn't digest the food anyway. It just comes out in his diaper and gives him cramps and a rash so he is better off not eating much.
Friday, January 2, 2009
Diaper Rash and Bloating Photos
Barrett never got this kind of rash until about a month ago. It seems to be related to either soy or corn. It is usually accompanied by the burn rash but this one tends to spread up his back and down his legs a little. It doesn't seem to bother him at all though.
Sometimes the rash spreads to his legs if the BMs are large and the diaper chafes his legs. His legs then swell up so we have to cut off the edges of the diaper or fold them under.
This is what the burn rash usually looks like. Sometimes it is so bad he actually bleeds.
Barrett's stomach often bloats after eating "illegal" foods. Around his belly button he normally measures 19" but when he bloats it is usually close to 20". It's hard to tell in this picture but the bloating usually occurs right under his ribs. his ribs actually get pushed out a little bit and it makes him look like an Ethiopian child.
Wednesday, December 31, 2008
An Overview of Our Story
If you would have told me when I got married that I would have a child with severe food intolerances I would have laughed. Nobody in my family, extended family, or anscestry had any known food problems except for one cousin who was allergic to pretty much everything. It was the same with my husband's family.
Barrett was my first child and so I did not know what was normal and what was not. He was born a month early and had diaper rash from the day he was born until three months later. Four doctors and several treatments later did not help in the least. I finally discovered that a concotion of A&D for burns and Mylanta solved the problem. It was a fix for the symptoms but I never discovered the cause.
Many months later when Barrett was walking he got a very severe diaper rash. He had rashes on and off for no apparent reason but never this bad. It was so bad we had to put toys on a chair for him to play with because he couldn't sit down. If he dropped one it hurt too bad for him to pick it back up so we had to be right there with him all the time. We had to rinse him off in the sink when he needed a diaper change because it hurt so bad to have us touch him with the wipes. We were at a loss and my special diaper concoction (we refer to as Stuff) had ceased to work months ago. We also noticed that when he had a bowel movement it looked almost like a pile of sand.
We did what any computer-programmer's family would do and did an internet search on sandy bowel movements and diaper rash. The search took us straight to a thread on Celiac.com. I was a little bit surprised because I was looking up diaper rash, not food intolerance. It had never occurred to me to make the connection. But I read about people with similiar experiences whose children were all diagnosed with Celiac. My husband's sister had been diagnosed with Celiac six months earlier so I did a search on symptoms and sure enough, Barrett had almost every one. I just hadn't recognized them.
I had no idea that it was not normal for a child to have 4 large bowel movements every day. I didn't know that sleep problems were related to digestion. He got sick easily, and I myself have an autoimmune disease although it is not food related. Everything seemed to come together. I realized that just before the bad diaper rash showed up we had eaten whole wheat pizza for dinner. Looking back further I realized the ever since my husband's sister had been diagnosed with Celiac I had tried to keep an eye on Barrett after eating wheat products, but I could never be sure if it was affecting him because I didn't write anything down and I brushed off what I did notice as me being paranoid.
We took immediate action and started my son on a gluten-free diet while we looked up diagnosis and treatment methods. We called his pediatrician and requested a blood test. The blood test came up negative but we had read that it was not a very reliable test, especially for kids under age five. We read the same about a biopsy. So we brushed off the test results and kept him gluten-free.
It took some time, but after several weeks he started to have fewer and smaller bowel movements, and they started to look less sandy. The diaper rash faded sooner than that and the burns on his bottom healed. That was enough evidence for me.
However, he still had problems every so often and although we had tried to eliminate all hidden gluten if we were missing something. We read that others with gluten intolerance could not tolerate casein either, so we decided to try to eliminate milk from his diet. Bingo. We solved it! Or so we thought.
He made even more improvement but after awhile we still felt like we were missing something. We had not had much success with local doctors. No one seemed to know much about what was going on, or even think that anything was going on at all. The pediatrician said if I was really worried I should just make an appointment with a gastroenterologist and have a biopsy done. I was completely against doing a biopsy because I would have to put Barrett back on a gluten-containing diet just to get a positive result. It seemed ridiculous to do something I knew would cause my son a lot of pain and discomfort just to prove that it was doing him damage. That much was obvious. I wanted to know what was causing the damage and a biopsy could not tell me that. We even tried a chiropractor and some homeopathic medicine that did absolutely nothing. We also had Barrett tested for cystic fibrosis (which thankfully he doesn't have).
Then we discovered Enterolab. We had read about it on Celiac.com and decided to fork out the money for it. (They do not deal with insurance companies). We sent for the tests and sent them back in. A few weeks later we knew that my son was sensitive to gluten and casein and carried no Celiac genes but two gluten-intolerance genes. It was so nice to know for sure that he had those sensitivities and that it wasn't some other obscure problem.
However, Barrett had still been having trouble and Enterolab does not have a test for corn sensitivity yet. We had found a connection between some cornbread muffins I had made, some taco soup a neighbor brought us (but cleared all ingredients with me first), and some Earth Balance margarine with natural flavoring derived from corn. I was sure it was corn that was causing the problem but my husband wasn't convinced. We tried feeding him some corn chips. He at about five of them and he had horrible diapers for two weeks and I was convinced.
But we had sent in for some more tests through Enterolab and the results showed that he is also extremely sensitive to soy (we had been feeding him soy milk for months) and mildly sensitive to eggs and yeast. No wonder we had been missing something! We looked back to the foods that had bothered him--the corn bread had the margarine which is soy based, the taco soup had hydroginated soybean, and even the corn chips were cooked with soybean oil. So we are still trying to figure out if corn really is a problem or not.
That is all to the story--for now.
E.T.A. Since writing this I have had an opportunity to experiment on Barrett with corn. He made such improvements after removing soy from his diet we decided to try corn again. Straight corn so there would be no confusion with any other ingredients. That was three days ago and so far--no reaction! It is such a relief! I let him have a corn tostada today, we'll see how that goes.
Barrett was my first child and so I did not know what was normal and what was not. He was born a month early and had diaper rash from the day he was born until three months later. Four doctors and several treatments later did not help in the least. I finally discovered that a concotion of A&D for burns and Mylanta solved the problem. It was a fix for the symptoms but I never discovered the cause.
Many months later when Barrett was walking he got a very severe diaper rash. He had rashes on and off for no apparent reason but never this bad. It was so bad we had to put toys on a chair for him to play with because he couldn't sit down. If he dropped one it hurt too bad for him to pick it back up so we had to be right there with him all the time. We had to rinse him off in the sink when he needed a diaper change because it hurt so bad to have us touch him with the wipes. We were at a loss and my special diaper concoction (we refer to as Stuff) had ceased to work months ago. We also noticed that when he had a bowel movement it looked almost like a pile of sand.
We did what any computer-programmer's family would do and did an internet search on sandy bowel movements and diaper rash. The search took us straight to a thread on Celiac.com. I was a little bit surprised because I was looking up diaper rash, not food intolerance. It had never occurred to me to make the connection. But I read about people with similiar experiences whose children were all diagnosed with Celiac. My husband's sister had been diagnosed with Celiac six months earlier so I did a search on symptoms and sure enough, Barrett had almost every one. I just hadn't recognized them.
I had no idea that it was not normal for a child to have 4 large bowel movements every day. I didn't know that sleep problems were related to digestion. He got sick easily, and I myself have an autoimmune disease although it is not food related. Everything seemed to come together. I realized that just before the bad diaper rash showed up we had eaten whole wheat pizza for dinner. Looking back further I realized the ever since my husband's sister had been diagnosed with Celiac I had tried to keep an eye on Barrett after eating wheat products, but I could never be sure if it was affecting him because I didn't write anything down and I brushed off what I did notice as me being paranoid.
We took immediate action and started my son on a gluten-free diet while we looked up diagnosis and treatment methods. We called his pediatrician and requested a blood test. The blood test came up negative but we had read that it was not a very reliable test, especially for kids under age five. We read the same about a biopsy. So we brushed off the test results and kept him gluten-free.
It took some time, but after several weeks he started to have fewer and smaller bowel movements, and they started to look less sandy. The diaper rash faded sooner than that and the burns on his bottom healed. That was enough evidence for me.
However, he still had problems every so often and although we had tried to eliminate all hidden gluten if we were missing something. We read that others with gluten intolerance could not tolerate casein either, so we decided to try to eliminate milk from his diet. Bingo. We solved it! Or so we thought.
He made even more improvement but after awhile we still felt like we were missing something. We had not had much success with local doctors. No one seemed to know much about what was going on, or even think that anything was going on at all. The pediatrician said if I was really worried I should just make an appointment with a gastroenterologist and have a biopsy done. I was completely against doing a biopsy because I would have to put Barrett back on a gluten-containing diet just to get a positive result. It seemed ridiculous to do something I knew would cause my son a lot of pain and discomfort just to prove that it was doing him damage. That much was obvious. I wanted to know what was causing the damage and a biopsy could not tell me that. We even tried a chiropractor and some homeopathic medicine that did absolutely nothing. We also had Barrett tested for cystic fibrosis (which thankfully he doesn't have).
Then we discovered Enterolab. We had read about it on Celiac.com and decided to fork out the money for it. (They do not deal with insurance companies). We sent for the tests and sent them back in. A few weeks later we knew that my son was sensitive to gluten and casein and carried no Celiac genes but two gluten-intolerance genes. It was so nice to know for sure that he had those sensitivities and that it wasn't some other obscure problem.
However, Barrett had still been having trouble and Enterolab does not have a test for corn sensitivity yet. We had found a connection between some cornbread muffins I had made, some taco soup a neighbor brought us (but cleared all ingredients with me first), and some Earth Balance margarine with natural flavoring derived from corn. I was sure it was corn that was causing the problem but my husband wasn't convinced. We tried feeding him some corn chips. He at about five of them and he had horrible diapers for two weeks and I was convinced.
But we had sent in for some more tests through Enterolab and the results showed that he is also extremely sensitive to soy (we had been feeding him soy milk for months) and mildly sensitive to eggs and yeast. No wonder we had been missing something! We looked back to the foods that had bothered him--the corn bread had the margarine which is soy based, the taco soup had hydroginated soybean, and even the corn chips were cooked with soybean oil. So we are still trying to figure out if corn really is a problem or not.
That is all to the story--for now.
E.T.A. Since writing this I have had an opportunity to experiment on Barrett with corn. He made such improvements after removing soy from his diet we decided to try corn again. Straight corn so there would be no confusion with any other ingredients. That was three days ago and so far--no reaction! It is such a relief! I let him have a corn tostada today, we'll see how that goes.
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