Guest guest Posted May 30, 2007 Report Share Posted May 30, 2007 Hello, My 2-year-old daughter Amber has a genetic disorder called -Magenis Syndrome. She is very social and is not considered autistic but she does bang her head when she gets upset. Sometimes she gets upset for no reason and often passes gas a few minutes later so I know that she has gas pain. She is generally under-sensitive to pain (doesn't cry when she scrapes her knee or gives blood) so the gas pain must be bad. Amber has had to be on Miralax for months at a time but usually her stools are loose. She has been off Miralax for several months now. Even with loose stools she only has a BM once every day or two so it's not diarrhea. She craves crackers, bread, and bananas. I heard about SCD and talked to a dietician about it who said that Amber has a hard time digesting carbs. She had never heard of SCD but said it would help Amber feel better. Before the diet Amber was not casein-free (she drank soy milk in her cup but I gave her cheese fairly often) so I thought I would try the regular cow's-milk version of SCD. I had her on the intro for two days. She ate some chicken pancakes and a pound of cooked carrots (not pureed) the first day. She didn't like the fruit-juice jello or fruit juice and doesn't usually like meat or eggs. She kept asking for crackers and bananas but was in a pretty good mood. The second day she wouldn't eat chicken pancakes but continued to ask for carrots at every snack and ate another pound that day. She was starting to get a little grouchy. The third day Amber slept in until 7:30 (usually she is up at 5:00) and was very lethargic. She wouldn't eat anything for breakfast but just looked at it and didn't ask for anything else. She fell asleep in church even though she is usually very alert in the mornings. I was worried that maybe she was needing carbs for energy so I decided that two days of the intro was enough and started her on ripe bananas. She perked right up and ate 5 bananas that day, and nothing else, except for half of a Dorito that she found. She wanted more bananas but I wouldn't let her have more than five. Now she has been having bananas for three days and is back to her old self -- also the gas has returned. While on the intro I didn't hear her pass gas and her bloated pot-belly went away. I didn't know she was bloated until it went away, I thought that was the natural shape of her belly. After starting bananas she began passing gas again and is bloated again. I guess she must be having a hard time with bananas and I will have to discontinue them. The problem is that I have since introduced cooked apples and cheddar cheese so I guess I will have to discontinue these as well since I wasn't able to see their effects. Here are my questions: Do I have to do the intro again, and for how long? Would one day be enough this time or should I do two or three again? It was scary when she was so lethargic and I thought she must be hungry. I was so relieved to see her eat bananas. What should I look out for when I give her a new food? Is a little gas normal or should I consider any gas to be a warning sign? At first I didn't discontinue the bananas because I thought a little gas was normal, but now it is pretty bad. So should I be concerned if she has even a little gas? That is a sign that the bacteria are fermenting her food, right? Is it okay to have cinnamon on the intro diet? I found that Amber likes the sneaky veggie pancakes made with carrots, but they have cinnamon and butter in them so are they intro foods? Here is what Amber is eating now: whole cooked baby carrots cooked apple slices ripe bananas chicken cupcakes (chicken, bananas, carrots, eggs) carrot pancakes (carrots, eggs, cinnamon, butter) cheddar cheese chicken pancakes (she had these at first but won't touch them now) one bite of beef hamburger one bite of steak but I don't think she swallowed it 1-2 tsp of Welch's 100% white grape juice that I mix her medicine in Amber takes melatonin for sleep, it is in a cellulose tablet Thank you so much for your help! Katy mom to Amber 2 years old -Magenis Syndrome SCD 6 days Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 30, 2007 Report Share Posted May 30, 2007 Katy, Welcome to the list, and I think you have found something really great for your daughter. I would absolutely pull those bananas out of her diet. Five bananas in a day is definitely too many, but the fact that the gas and bloating returned is a sign of intolerance. The lethargy that you saw on Sunday is a die off reaction. The harmful bacteria and yeast die off displays itself in many different ways because everyone is different. Some parents see increased irritability, stimming, nausia, lethargy, vomitting, constepation, diharea, ect. I would do the intro diet for two days again just to get her back to square one, and moving in the right direction. Also, you should stick to ground beef rather than steak for a little while just because the ground beef is easier for her to digest. I would introduce a new food every two to three days after that, and watch for symptoms. If her bloating or gas return, then I would pull that food out for a good while. We have noticed that some children have trouble with carrots, bananas, or apples. It appears that she did fine with the carrots, but not the bananas. If she has problems with the pealed, seeded, and cooked apples, you can try pears instead. Keep us posted. Meleah Help - Bananas causing gas Hello, My 2-year-old daughter Amber has a genetic disorder called -Magenis Syndrome. She is very social and is not considered autistic but she does bang her head when she gets upset. Sometimes she gets upset for no reason and often passes gas a few minutes later so I know that she has gas pain. She is generally under-sensitive to pain (doesn't cry when she scrapes her knee or gives blood) so the gas pain must be bad. Amber has had to be on Miralax for months at a time but usually her stools are loose. She has been off Miralax for several months now. Even with loose stools she only has a BM once every day or two so it's not diarrhea. She craves crackers, bread, and bananas. I heard about SCD and talked to a dietician about it who said that Amber has a hard time digesting carbs. She had never heard of SCD but said it would help Amber feel better. Before the diet Amber was not casein-free (she drank soy milk in her cup but I gave her cheese fairly often) so I thought I would try the regular cow's-milk version of SCD. I had her on the intro for two days. She ate some chicken pancakes and a pound of cooked carrots (not pureed) the first day. She didn't like the fruit-juice jello or fruit juice and doesn't usually like meat or eggs. She kept asking for crackers and bananas but was in a pretty good mood. The second day she wouldn't eat chicken pancakes but continued to ask for carrots at every snack and ate another pound that day. She was starting to get a little grouchy. The third day Amber slept in until 7:30 (usually she is up at 5:00) and was very lethargic. She wouldn't eat anything for breakfast but just looked at it and didn't ask for anything else. She fell asleep in church even though she is usually very alert in the mornings. I was worried that maybe she was needing carbs for energy so I decided that two days of the intro was enough and started her on ripe bananas. She perked right up and ate 5 bananas that day, and nothing else, except for half of a Dorito that she found. She wanted more bananas but I wouldn't let her have more than five. Now she has been having bananas for three days and is back to her old self -- also the gas has returned. While on the intro I didn't hear her pass gas and her bloated pot-belly went away. I didn't know she was bloated until it went away, I thought that was the natural shape of her belly. After starting bananas she began passing gas again and is bloated again. I guess she must be having a hard time with bananas and I will have to discontinue them. The problem is that I have since introduced cooked apples and cheddar cheese so I guess I will have to discontinue these as well since I wasn't able to see their effects. Here are my questions: Do I have to do the intro again, and for how long? Would one day be enough this time or should I do two or three again? It was scary when she was so lethargic and I thought she must be hungry. I was so relieved to see her eat bananas. What should I look out for when I give her a new food? Is a little gas normal or should I consider any gas to be a warning sign? At first I didn't discontinue the bananas because I thought a little gas was normal, but now it is pretty bad. So should I be concerned if she has even a little gas? That is a sign that the bacteria are fermenting her food, right? Is it okay to have cinnamon on the intro diet? I found that Amber likes the sneaky veggie pancakes made with carrots, but they have cinnamon and butter in them so are they intro foods? Here is what Amber is eating now: whole cooked baby carrots cooked apple slices ripe bananas chicken cupcakes (chicken, bananas, carrots, eggs) carrot pancakes (carrots, eggs, cinnamon, butter) cheddar cheese chicken pancakes (she had these at first but won't touch them now) one bite of beef hamburger one bite of steak but I don't think she swallowed it 1-2 tsp of Welch's 100% white grape juice that I mix her medicine in Amber takes melatonin for sleep, it is in a cellulose tablet Thank you so much for your help! Katy mom to Amber 2 years old -Magenis Syndrome SCD 6 days Quote Link to comment Share on other sites More sharing options...
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