Guest guest Posted March 7, 2006 Report Share Posted March 7, 2006 , I am still cleaning out my e-mail and am down to 245 from about 900 after our trip and a few days off here. I just read your post. Yes, Patty was loctose intolerant when she was a baby. She was so bad it took months to find something she could tolerate. And then it was a formula that was new and only attained by prescription and was expensive. We didn't have the money for it so our doctor used to get tons and give it to me almost free. I forget what the name was but that was 20 years ago and I am sure there are even better things out there now. It took forever to get that " failure to thrive " label of her. She started eating bread and cookies around the age of about a year but we had to be careful. She would get horrible diarahaea. It was a slow and steady thing. By the age of 2 she was doing better and we added other things. By the age of 7 she was still on a watchful diet but not as intense. As she grew her body accepted more and more. She started ice cream but would only have that on Fridays (to get through the weekend). She even had 1% milk in her cereal. Once we had control of her bowels (yea and then there was the constipation thing) she also had to drink ensure. She loved it but could only have it twice a week. We spent years and years trying desperately to put weight on her. Now that she's an adult things have gone the other way. To supplement her as a child we gave her crushed calcium that I put in jelly and/or something she couldn't spit out. That was horrible because she refused to take it. She could hold that in her mouth for an hour! Finally I gave up because the battle was worse than the reason to have it. When she could take acidic drinks and foods I fortified her with orange juice with calcium etc. She also takes tums with calcium. Along with that she continues to take calcium every day. Patty still doesn't drink milk and every now and then she gets whacked if she eats too much ice cream or things that have milk in them. Now, please whatever you do don't wait 24 years to go away with your husband like I did. It was better than anything I could have ever dreamed of. I wished I did it a long time ago. Everyone needs a break. That time off for the two of us alone was in your words, awesome! Bonnie, mom to a 23, Patty CHARGE 21, and wife to Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2006 Report Share Posted March 8, 2006 ay bonnie you know theres to bonnies in here lol > > , > > I am still cleaning out my e-mail and am down to 245 from about 900 after > our > trip and a few days off here. I just read your post. Yes, Patty was > loctose > intolerant when she was a baby. She was so bad it took months to find > something she could tolerate. And then it was a formula that was new and > only > attained by prescription and was expensive. We didn't have the money for > it so our > doctor used to get tons and give it to me almost free. I forget what the > name was but that was 20 years ago and I am sure there are even better > things out > there now. > > It took forever to get that " failure to thrive " label of her. She started > eating bread and cookies around the age of about a year but we had to be > careful. She would get horrible diarahaea. It was a slow and steady > thing. By the > age of 2 she was doing better and we added other things. By the age of 7 > she > was still on a watchful diet but not as intense. As she grew her body > accepted more and more. She started ice cream but would only have that on > Fridays > (to get through the weekend). She even had 1% milk in her cereal. > > Once we had control of her bowels (yea and then there was the constipation > thing) she also had to drink ensure. She loved it but could only have it > twice > a week. We spent years and years trying desperately to put weight on > her. > Now that she's an adult things have gone the other way. > > To supplement her as a child we gave her crushed calcium that I put in > jelly > and/or something she couldn't spit out. That was horrible because she > refused > to take it. She could hold that in her mouth for an hour! Finally I gave > up > because the battle was worse than the reason to have it. > > When she could take acidic drinks and foods I fortified her with orange > juice > with calcium etc. She also takes tums with calcium. Along with that she > continues to take calcium every day. > > Patty still doesn't drink milk and every now and then she gets whacked if > she > eats too much ice cream or things that have milk in them. > > Now, please whatever you do don't wait 24 years to go away with your > husband > like I did. It was better than anything I could have ever dreamed of. I > wished I did it a long time ago. Everyone needs a break. > > That time off for the two of us alone was in your words, awesome! > > > > Bonnie, mom to a 23, Patty CHARGE 21, and wife to > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2006 Report Share Posted March 8, 2006 ay bonnie you know theres to bonnies in here lol > > , > > I am still cleaning out my e-mail and am down to 245 from about 900 after > our > trip and a few days off here. I just read your post. Yes, Patty was > loctose > intolerant when she was a baby. She was so bad it took months to find > something she could tolerate. And then it was a formula that was new and > only > attained by prescription and was expensive. We didn't have the money for > it so our > doctor used to get tons and give it to me almost free. I forget what the > name was but that was 20 years ago and I am sure there are even better > things out > there now. > > It took forever to get that " failure to thrive " label of her. She started > eating bread and cookies around the age of about a year but we had to be > careful. She would get horrible diarahaea. It was a slow and steady > thing. By the > age of 2 she was doing better and we added other things. By the age of 7 > she > was still on a watchful diet but not as intense. As she grew her body > accepted more and more. She started ice cream but would only have that on > Fridays > (to get through the weekend). She even had 1% milk in her cereal. > > Once we had control of her bowels (yea and then there was the constipation > thing) she also had to drink ensure. She loved it but could only have it > twice > a week. We spent years and years trying desperately to put weight on > her. > Now that she's an adult things have gone the other way. > > To supplement her as a child we gave her crushed calcium that I put in > jelly > and/or something she couldn't spit out. That was horrible because she > refused > to take it. She could hold that in her mouth for an hour! Finally I gave > up > because the battle was worse than the reason to have it. > > When she could take acidic drinks and foods I fortified her with orange > juice > with calcium etc. She also takes tums with calcium. Along with that she > continues to take calcium every day. > > Patty still doesn't drink milk and every now and then she gets whacked if > she > eats too much ice cream or things that have milk in them. > > Now, please whatever you do don't wait 24 years to go away with your > husband > like I did. It was better than anything I could have ever dreamed of. I > wished I did it a long time ago. Everyone needs a break. > > That time off for the two of us alone was in your words, awesome! > > > > Bonnie, mom to a 23, Patty CHARGE 21, and wife to > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2006 Report Share Posted March 8, 2006 Ellen, Yes, I just read last night that there's another Bonnie on this list. It is not a name that I run into. Hey Bonnie from South Africa-nice to see of another one! Welcome to the list. Bonnie, mom to a 23, Patty CHARGE 21, and wife to Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2006 Report Share Posted March 8, 2006 Yeah the one from South Africa... Re: To Bonnie ay bonnie you know theres to bonnies in here lol > > , > > I am still cleaning out my e-mail and am down to 245 from about 900 after > our > trip and a few days off here. I just read your post. Yes, Patty was > loctose > intolerant when she was a baby. She was so bad it took months to find > something she could tolerate. And then it was a formula that was new and > only > attained by prescription and was expensive. We didn't have the money for > it so our > doctor used to get tons and give it to me almost free. I forget what the > name was but that was 20 years ago and I am sure there are even better > things out > there now. > > It took forever to get that " failure to thrive " label of her. She started > eating bread and cookies around the age of about a year but we had to be > careful. She would get horrible diarahaea. It was a slow and steady > thing. By the > age of 2 she was doing better and we added other things. By the age of 7 > she > was still on a watchful diet but not as intense. As she grew her body > accepted more and more. She started ice cream but would only have that on > Fridays > (to get through the weekend). She even had 1% milk in her cereal. > > Once we had control of her bowels (yea and then there was the constipation > thing) she also had to drink ensure. She loved it but could only have it > twice > a week. We spent years and years trying desperately to put weight on > her. > Now that she's an adult things have gone the other way. > > To supplement her as a child we gave her crushed calcium that I put in > jelly > and/or something she couldn't spit out. That was horrible because she > refused > to take it. She could hold that in her mouth for an hour! Finally I gave > up > because the battle was worse than the reason to have it. > > When she could take acidic drinks and foods I fortified her with orange > juice > with calcium etc. She also takes tums with calcium. Along with that she > continues to take calcium every day. > > Patty still doesn't drink milk and every now and then she gets whacked if > she > eats too much ice cream or things that have milk in them. > > Now, please whatever you do don't wait 24 years to go away with your > husband > like I did. It was better than anything I could have ever dreamed of. I > wished I did it a long time ago. Everyone needs a break. > > That time off for the two of us alone was in your words, awesome! > > > > Bonnie, mom to a 23, Patty CHARGE 21, and wife to > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2006 Report Share Posted March 8, 2006 Thanks Re: To Bonnie Ellen, Yes, I just read last night that there's another Bonnie on this list. It is not a name that I run into. Hey Bonnie from South Africa-nice to see of another one! Welcome to the list. Bonnie, mom to a 23, Patty CHARGE 21, and wife to Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2006 Report Share Posted March 8, 2006 Bonnie, Was Patty ever tube fed? I struggle to keep weight on Carmen too. She's never been tube fed and I'm struggling with whether she'll outgrow some of her swallowing struggles or need the g tube before then. She's 20 months old and I'm thinking if we can just keep going without it (we have the trach, so I'm trying to keep only one man made stoma for now). She gains about 1/4 pound per month but is below the 5th percentile--she follows the curve but is just way below it. > > , > > I am still cleaning out my e-mail and am down to 245 from about 900 after our > trip and a few days off here. I just read your post. Yes, Patty was loctose > intolerant when she was a baby. She was so bad it took months to find > something she could tolerate. And then it was a formula that was new and only > attained by prescription and was expensive. We didn't have the money for it so our > doctor used to get tons and give it to me almost free. I forget what the > name was but that was 20 years ago and I am sure there are even better things out > there now. > > It took forever to get that " failure to thrive " label of her. She started > eating bread and cookies around the age of about a year but we had to be > careful. She would get horrible diarahaea. It was a slow and steady thing. By the > age of 2 she was doing better and we added other things. By the age of 7 she > was still on a watchful diet but not as intense. As she grew her body > accepted more and more. She started ice cream but would only have that on Fridays > (to get through the weekend). She even had 1% milk in her cereal. > > Once we had control of her bowels (yea and then there was the constipation > thing) she also had to drink ensure. She loved it but could only have it twice > a week. We spent years and years trying desperately to put weight on her. > Now that she's an adult things have gone the other way. > > To supplement her as a child we gave her crushed calcium that I put in jelly > and/or something she couldn't spit out. That was horrible because she refused > to take it. She could hold that in her mouth for an hour! Finally I gave up > because the battle was worse than the reason to have it. > > When she could take acidic drinks and foods I fortified her with orange juice > with calcium etc. She also takes tums with calcium. Along with that she > continues to take calcium every day. > > Patty still doesn't drink milk and every now and then she gets whacked if she > eats too much ice cream or things that have milk in them. > > Now, please whatever you do don't wait 24 years to go away with your husband > like I did. It was better than anything I could have ever dreamed of. I > wished I did it a long time ago. Everyone needs a break. > > That time off for the two of us alone was in your words, awesome! > > > > Bonnie, mom to a 23, Patty CHARGE 21, and wife to > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2006 Report Share Posted March 8, 2006 Bonnie, Was Patty ever tube fed? I struggle to keep weight on Carmen too. She's never been tube fed and I'm struggling with whether she'll outgrow some of her swallowing struggles or need the g tube before then. She's 20 months old and I'm thinking if we can just keep going without it (we have the trach, so I'm trying to keep only one man made stoma for now). She gains about 1/4 pound per month but is below the 5th percentile--she follows the curve but is just way below it. > > , > > I am still cleaning out my e-mail and am down to 245 from about 900 after our > trip and a few days off here. I just read your post. Yes, Patty was loctose > intolerant when she was a baby. She was so bad it took months to find > something she could tolerate. And then it was a formula that was new and only > attained by prescription and was expensive. We didn't have the money for it so our > doctor used to get tons and give it to me almost free. I forget what the > name was but that was 20 years ago and I am sure there are even better things out > there now. > > It took forever to get that " failure to thrive " label of her. She started > eating bread and cookies around the age of about a year but we had to be > careful. She would get horrible diarahaea. It was a slow and steady thing. By the > age of 2 she was doing better and we added other things. By the age of 7 she > was still on a watchful diet but not as intense. As she grew her body > accepted more and more. She started ice cream but would only have that on Fridays > (to get through the weekend). She even had 1% milk in her cereal. > > Once we had control of her bowels (yea and then there was the constipation > thing) she also had to drink ensure. She loved it but could only have it twice > a week. We spent years and years trying desperately to put weight on her. > Now that she's an adult things have gone the other way. > > To supplement her as a child we gave her crushed calcium that I put in jelly > and/or something she couldn't spit out. That was horrible because she refused > to take it. She could hold that in her mouth for an hour! Finally I gave up > because the battle was worse than the reason to have it. > > When she could take acidic drinks and foods I fortified her with orange juice > with calcium etc. She also takes tums with calcium. Along with that she > continues to take calcium every day. > > Patty still doesn't drink milk and every now and then she gets whacked if she > eats too much ice cream or things that have milk in them. > > Now, please whatever you do don't wait 24 years to go away with your husband > like I did. It was better than anything I could have ever dreamed of. I > wished I did it a long time ago. Everyone needs a break. > > That time off for the two of us alone was in your words, awesome! > > > > Bonnie, mom to a 23, Patty CHARGE 21, and wife to > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2006 Report Share Posted March 8, 2006 Bonnie, Was Patty ever tube fed? I struggle to keep weight on Carmen too. She's never been tube fed and I'm struggling with whether she'll outgrow some of her swallowing struggles or need the g tube before then. She's 20 months old and I'm thinking if we can just keep going without it (we have the trach, so I'm trying to keep only one man made stoma for now). She gains about 1/4 pound per month but is below the 5th percentile--she follows the curve but is just way below it. > > , > > I am still cleaning out my e-mail and am down to 245 from about 900 after our > trip and a few days off here. I just read your post. Yes, Patty was loctose > intolerant when she was a baby. She was so bad it took months to find > something she could tolerate. And then it was a formula that was new and only > attained by prescription and was expensive. We didn't have the money for it so our > doctor used to get tons and give it to me almost free. I forget what the > name was but that was 20 years ago and I am sure there are even better things out > there now. > > It took forever to get that " failure to thrive " label of her. She started > eating bread and cookies around the age of about a year but we had to be > careful. She would get horrible diarahaea. It was a slow and steady thing. By the > age of 2 she was doing better and we added other things. By the age of 7 she > was still on a watchful diet but not as intense. As she grew her body > accepted more and more. She started ice cream but would only have that on Fridays > (to get through the weekend). She even had 1% milk in her cereal. > > Once we had control of her bowels (yea and then there was the constipation > thing) she also had to drink ensure. She loved it but could only have it twice > a week. We spent years and years trying desperately to put weight on her. > Now that she's an adult things have gone the other way. > > To supplement her as a child we gave her crushed calcium that I put in jelly > and/or something she couldn't spit out. That was horrible because she refused > to take it. She could hold that in her mouth for an hour! Finally I gave up > because the battle was worse than the reason to have it. > > When she could take acidic drinks and foods I fortified her with orange juice > with calcium etc. She also takes tums with calcium. Along with that she > continues to take calcium every day. > > Patty still doesn't drink milk and every now and then she gets whacked if she > eats too much ice cream or things that have milk in them. > > Now, please whatever you do don't wait 24 years to go away with your husband > like I did. It was better than anything I could have ever dreamed of. I > wished I did it a long time ago. Everyone needs a break. > > That time off for the two of us alone was in your words, awesome! > > > > Bonnie, mom to a 23, Patty CHARGE 21, and wife to > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2006 Report Share Posted March 8, 2006 Carmen- To complicate your thoughts -- Aubrie did have the tube from infancy to age 1.5 yrs -- and she never gained weight well even with it. She stayed well below the fifth percentile forever. She's finally gaining weight this year. At age 8, she has just hit 47 lbs. When she was tube fed she got super high cal formula. After, she drank Pediasure. Now she's still on whole milk. She eats well and there are no low-fat products in our house. Michele W mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2006 Report Share Posted March 8, 2006 Carmen- To complicate your thoughts -- Aubrie did have the tube from infancy to age 1.5 yrs -- and she never gained weight well even with it. She stayed well below the fifth percentile forever. She's finally gaining weight this year. At age 8, she has just hit 47 lbs. When she was tube fed she got super high cal formula. After, she drank Pediasure. Now she's still on whole milk. She eats well and there are no low-fat products in our house. Michele W mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2006 Report Share Posted March 8, 2006 , Are your doctors aware that it is quite typical for children with CHARGE to be about the 3rd percentile. If she is gaining steadily, does not have major surgery coming up that you want her " beefed up " for, and so on - I wonder if the g-tube is necessary especially if you are able to keep her hydrated. How is her height? Before doing a surgical intervention I would also consider having an endocrinologist evaluate her growth hormone - some kids with CHARGE have actual low growth hormone levels. If so, all the calories in the world won't correct the problem. Just a couple thoughts to consider if you are not convinced the tube is necessary. Kim > Bonnie, Was Patty ever tube fed? I struggle to keep weight on Carmen > too. She's never been tube fed and I'm struggling with whether she'll > outgrow some of her swallowing struggles or need the g tube before > then. She's 20 months old and I'm thinking if we can just keep going > without it (we have the trach, so I'm trying to keep only one man made > stoma for now). She gains about 1/4 pound per month but is below the > 5th percentile--she follows the curve but is just way below it. > > > > >> >> , >> >> I am still cleaning out my e-mail and am down to 245 from about 900 > after our >> trip and a few days off here. I just read your post. Yes, Patty > was loctose >> intolerant when she was a baby. She was so bad it took months to find >> something she could tolerate. And then it was a formula that was > new and only >> attained by prescription and was expensive. We didn't have the > money for it so our >> doctor used to get tons and give it to me almost free. I forget > what the >> name was but that was 20 years ago and I am sure there are even > better things out >> there now. >> >> It took forever to get that " failure to thrive " label of her. She > started >> eating bread and cookies around the age of about a year but we had > to be >> careful. She would get horrible diarahaea. It was a slow and > steady thing. By the >> age of 2 she was doing better and we added other things. By the age > of 7 she >> was still on a watchful diet but not as intense. As she grew her body >> accepted more and more. She started ice cream but would only have > that on Fridays >> (to get through the weekend). She even had 1% milk in her cereal. >> >> Once we had control of her bowels (yea and then there was the > constipation >> thing) she also had to drink ensure. She loved it but could only > have it twice >> a week. We spent years and years trying desperately to put weight > on her. >> Now that she's an adult things have gone the other way. >> >> To supplement her as a child we gave her crushed calcium that I put > in jelly >> and/or something she couldn't spit out. That was horrible because > she refused >> to take it. She could hold that in her mouth for an hour! Finally I > gave up >> because the battle was worse than the reason to have it. >> >> When she could take acidic drinks and foods I fortified her with > orange juice >> with calcium etc. She also takes tums with calcium. Along with > that she >> continues to take calcium every day. >> >> Patty still doesn't drink milk and every now and then she gets > whacked if she >> eats too much ice cream or things that have milk in them. >> >> Now, please whatever you do don't wait 24 years to go away with your > husband >> like I did. It was better than anything I could have ever dreamed > of. I >> wished I did it a long time ago. Everyone needs a break. >> >> That time off for the two of us alone was in your words, awesome! >> >> >> >> Bonnie, mom to a 23, Patty CHARGE 21, and wife to >> >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2006 Report Share Posted March 8, 2006 , Are your doctors aware that it is quite typical for children with CHARGE to be about the 3rd percentile. If she is gaining steadily, does not have major surgery coming up that you want her " beefed up " for, and so on - I wonder if the g-tube is necessary especially if you are able to keep her hydrated. How is her height? Before doing a surgical intervention I would also consider having an endocrinologist evaluate her growth hormone - some kids with CHARGE have actual low growth hormone levels. If so, all the calories in the world won't correct the problem. Just a couple thoughts to consider if you are not convinced the tube is necessary. Kim > Bonnie, Was Patty ever tube fed? I struggle to keep weight on Carmen > too. She's never been tube fed and I'm struggling with whether she'll > outgrow some of her swallowing struggles or need the g tube before > then. She's 20 months old and I'm thinking if we can just keep going > without it (we have the trach, so I'm trying to keep only one man made > stoma for now). She gains about 1/4 pound per month but is below the > 5th percentile--she follows the curve but is just way below it. > > > > >> >> , >> >> I am still cleaning out my e-mail and am down to 245 from about 900 > after our >> trip and a few days off here. I just read your post. Yes, Patty > was loctose >> intolerant when she was a baby. She was so bad it took months to find >> something she could tolerate. And then it was a formula that was > new and only >> attained by prescription and was expensive. We didn't have the > money for it so our >> doctor used to get tons and give it to me almost free. I forget > what the >> name was but that was 20 years ago and I am sure there are even > better things out >> there now. >> >> It took forever to get that " failure to thrive " label of her. She > started >> eating bread and cookies around the age of about a year but we had > to be >> careful. She would get horrible diarahaea. It was a slow and > steady thing. By the >> age of 2 she was doing better and we added other things. By the age > of 7 she >> was still on a watchful diet but not as intense. As she grew her body >> accepted more and more. She started ice cream but would only have > that on Fridays >> (to get through the weekend). She even had 1% milk in her cereal. >> >> Once we had control of her bowels (yea and then there was the > constipation >> thing) she also had to drink ensure. She loved it but could only > have it twice >> a week. We spent years and years trying desperately to put weight > on her. >> Now that she's an adult things have gone the other way. >> >> To supplement her as a child we gave her crushed calcium that I put > in jelly >> and/or something she couldn't spit out. That was horrible because > she refused >> to take it. She could hold that in her mouth for an hour! Finally I > gave up >> because the battle was worse than the reason to have it. >> >> When she could take acidic drinks and foods I fortified her with > orange juice >> with calcium etc. She also takes tums with calcium. Along with > that she >> continues to take calcium every day. >> >> Patty still doesn't drink milk and every now and then she gets > whacked if she >> eats too much ice cream or things that have milk in them. >> >> Now, please whatever you do don't wait 24 years to go away with your > husband >> like I did. It was better than anything I could have ever dreamed > of. I >> wished I did it a long time ago. Everyone needs a break. >> >> That time off for the two of us alone was in your words, awesome! >> >> >> >> Bonnie, mom to a 23, Patty CHARGE 21, and wife to >> >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2006 Report Share Posted March 8, 2006 Michele, Yes, I've deducted this may be the case for some of our kids. Did Aubrie ever get diagnosed with failure to thrive? B. > > Carmen- > To complicate your thoughts -- Aubrie did have the tube from infancy to age > 1.5 yrs -- and she never gained weight well even with it. She stayed well > below the fifth percentile forever. She's finally gaining weight this year. > At age 8, she has just hit 47 lbs. When she was tube fed she got super high > cal formula. After, she drank Pediasure. Now she's still on whole milk. > She eats well and there are no low-fat products in our house. > > Michele W > mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2006 Report Share Posted March 8, 2006 Kim, Yes I am thinking that Carmen will always be on the small side--her dad and I are actually not very big either, so it's not surprising. Carmen's brother, Zachary has always been about 40th for weight and 25th for height! Carm's pediatrician is great, and basically says as long as Carmen continues to steadily grow and not level off that he's happy! > >> > >> , > >> > >> I am still cleaning out my e-mail and am down to 245 from about 900 > > after our > >> trip and a few days off here. I just read your post. Yes, Patty > > was loctose > >> intolerant when she was a baby. She was so bad it took months to find > >> something she could tolerate. And then it was a formula that was > > new and only > >> attained by prescription and was expensive. We didn't have the > > money for it so our > >> doctor used to get tons and give it to me almost free. I forget > > what the > >> name was but that was 20 years ago and I am sure there are even > > better things out > >> there now. > >> > >> It took forever to get that " failure to thrive " label of her. She > > started > >> eating bread and cookies around the age of about a year but we had > > to be > >> careful. She would get horrible diarahaea. It was a slow and > > steady thing. By the > >> age of 2 she was doing better and we added other things. By the age > > of 7 she > >> was still on a watchful diet but not as intense. As she grew her body > >> accepted more and more. She started ice cream but would only have > > that on Fridays > >> (to get through the weekend). She even had 1% milk in her cereal. > >> > >> Once we had control of her bowels (yea and then there was the > > constipation > >> thing) she also had to drink ensure. She loved it but could only > > have it twice > >> a week. We spent years and years trying desperately to put weight > > on her. > >> Now that she's an adult things have gone the other way. > >> > >> To supplement her as a child we gave her crushed calcium that I put > > in jelly > >> and/or something she couldn't spit out. That was horrible because > > she refused > >> to take it. She could hold that in her mouth for an hour! Finally I > > gave up > >> because the battle was worse than the reason to have it. > >> > >> When she could take acidic drinks and foods I fortified her with > > orange juice > >> with calcium etc. She also takes tums with calcium. Along with > > that she > >> continues to take calcium every day. > >> > >> Patty still doesn't drink milk and every now and then she gets > > whacked if she > >> eats too much ice cream or things that have milk in them. > >> > >> Now, please whatever you do don't wait 24 years to go away with your > > husband > >> like I did. It was better than anything I could have ever dreamed > > of. I > >> wished I did it a long time ago. Everyone needs a break. > >> > >> That time off for the two of us alone was in your words, awesome! > >> > >> > >> > >> Bonnie, mom to a 23, Patty CHARGE 21, and wife to > >> > >> > >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2006 Report Share Posted March 8, 2006 - That sounds right. You should know though that the big " take-home message " of the 2003 conference was that every child should have an endocrinologist following their growth and other issues from as early as possible. So, when you're feeling ready to add another specialist to your list, you should find one and get that relationship started. You'll want them to watch growth and also assist with preventing early osteoporosis and support puberty in a proactive way. Michele W mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ Re: To Bonnie Kim, Yes I am thinking that Carmen will always be on the small side--her dad and I are actually not very big either, so it's not surprising. Carmen's brother, Zachary has always been about 40th for weight and 25th for height! Carm's pediatrician is great, and basically says as long as Carmen continues to steadily grow and not level off that he's happy! > >> > >> , > >> > >> I am still cleaning out my e-mail and am down to 245 from about 900 > > after our > >> trip and a few days off here. I just read your post. Yes, Patty > > was loctose > >> intolerant when she was a baby. She was so bad it took months to find > >> something she could tolerate. And then it was a formula that was > > new and only > >> attained by prescription and was expensive. We didn't have the > > money for it so our > >> doctor used to get tons and give it to me almost free. I forget > > what the > >> name was but that was 20 years ago and I am sure there are even > > better things out > >> there now. > >> > >> It took forever to get that " failure to thrive " label of her. She > > started > >> eating bread and cookies around the age of about a year but we had > > to be > >> careful. She would get horrible diarahaea. It was a slow and > > steady thing. By the > >> age of 2 she was doing better and we added other things. By the age > > of 7 she > >> was still on a watchful diet but not as intense. As she grew her body > >> accepted more and more. She started ice cream but would only have > > that on Fridays > >> (to get through the weekend). She even had 1% milk in her cereal. > >> > >> Once we had control of her bowels (yea and then there was the > > constipation > >> thing) she also had to drink ensure. She loved it but could only > > have it twice > >> a week. We spent years and years trying desperately to put weight > > on her. > >> Now that she's an adult things have gone the other way. > >> > >> To supplement her as a child we gave her crushed calcium that I put > > in jelly > >> and/or something she couldn't spit out. That was horrible because > > she refused > >> to take it. She could hold that in her mouth for an hour! Finally I > > gave up > >> because the battle was worse than the reason to have it. > >> > >> When she could take acidic drinks and foods I fortified her with > > orange juice > >> with calcium etc. She also takes tums with calcium. Along with > > that she > >> continues to take calcium every day. > >> > >> Patty still doesn't drink milk and every now and then she gets > > whacked if she > >> eats too much ice cream or things that have milk in them. > >> > >> Now, please whatever you do don't wait 24 years to go away with your > > husband > >> like I did. It was better than anything I could have ever dreamed > > of. I > >> wished I did it a long time ago. Everyone needs a break. > >> > >> That time off for the two of us alone was in your words, awesome! > >> > >> > >> > >> Bonnie, mom to a 23, Patty CHARGE 21, and wife to > >> > >> > >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2006 Report Share Posted March 8, 2006 Yes, she was " failure to thrive " at 4 weeks old. She'd been hospitalized at birth til 3 weeks, then went back in at 4 weeks for another week or 2. That's when she got the NGtube which later was changed to the Gtube. Michele W mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ Re: To Bonnie Michele, Yes, I've deducted this may be the case for some of our kids. Did Aubrie ever get diagnosed with failure to thrive? B. > > Carmen- > To complicate your thoughts -- Aubrie did have the tube from infancy to age > 1.5 yrs -- and she never gained weight well even with it. She stayed well > below the fifth percentile forever. She's finally gaining weight this year. > At age 8, she has just hit 47 lbs. When she was tube fed she got super high > cal formula. After, she drank Pediasure. Now she's still on whole milk. > She eats well and there are no low-fat products in our house. > > Michele W > mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ > CHARGE SYNDROME LISTSERV PHOTO PAGE: http://www.imagestation.com/album/?id=2117043995 Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation or CHARGE Syndrome Canada. For information about the CHARGE Syndrome Foundation or to become a member (and get the newsletter), please contact marion@... or visit the web site at http://www.chargesyndrome.org (CHARGE Syndrome Canada - http://www.chargesyndrome.ca) 8th International CHARGE Syndrome Conference, July, 2007. Information will be available at www.chargesyndrome.org or by calling 1-. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2006 Report Share Posted March 8, 2006 , Please remember that Patty is 21 and I am sure there have been a great deal of medical advances since she was a baby. No, she was never tube fed and yes she struggled to keep on weight. It was a battle for her. I don't know if it was because of her food coming out of her nose, lack of swallowing, reflux, her pneumonia's, ear infections, lactose intollerance....But I think it was all of that and more. We had to feed her two ounces every two hours for months. Feeding her took over a half hour so it seemed that is all we did. Then it was three ounces every three hours etc. We even had to do it during the night. Oh would and I argue on who's turn it was and to be honest we didn't follow that schedule so closely after about a month after she was home. I felt it was more important for her to at least sleep as much as possible for her health. We were also told that although she wasn't ON the growth chart she was following it so not to worry. I realize now that we didn't have insurance so little was done medically. I think if we had insurance she might have been tube fed as an infant. Then she could have just focused on being. Patty had gotten so much better at eating by the time she was 20 months old. But I used to garden, can and freeze my own fruits and vegetables, cook without salt, grind up our meals for her.... It wasn't just the calcium and carbohydrates that I wanted her to have, I wanted her to be nutritionally strong. I even used have tofu in our diet. Not anymore! I am just wondering how much Carmen weighs? Is her height near or at the 5th percentile too? Patty's weight and height increased as they were supposed to though they were both below. I would never suggest what to do because I don't know your child. In the end of all this Patty thrived. Plus, she really got tons of use out of her clothes. Kris grew out of everything but I can honestly say Patty wore out some outfits! Bonnie, mom to a 23, Patty CHARGE 21, and wife to Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2006 Report Share Posted March 8, 2006 Hi , is and has always been in the 5th percentile....his doctor is not worried... eats 2000 calories each day and runs off about 3000...he is in constant motion...whether it is singing or dancing...running up the hall... was tube fed for 4 years and after jumping through all the hoops for the doctors had it removed when he was 6.... follows his own curve....he is 48.5 inches tall and 47 pounds....and doing well....The reason the tube was in in the first place was to pack on weight for open heart surgery....... It was not an easy decision but since he had a cleft lip and palate he could not drink enough by mouth to support life...it had to be done... Good luck Ellen mom to 8 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2006 Report Share Posted March 9, 2006 Good point, Michele. I guess one more specialist isn't going to break us at this point. I will email Carmen's primary ped doc on that one today. Thanks much, B. > > >> > > >> , > > >> > > >> I am still cleaning out my e-mail and am down to 245 from about 900 > > > after our > > >> trip and a few days off here. I just read your post. Yes, Patty > > > was loctose > > >> intolerant when she was a baby. She was so bad it took months to > find > > >> something she could tolerate. And then it was a formula that was > > > new and only > > >> attained by prescription and was expensive. We didn't have the > > > money for it so our > > >> doctor used to get tons and give it to me almost free. I forget > > > what the > > >> name was but that was 20 years ago and I am sure there are even > > > better things out > > >> there now. > > >> > > >> It took forever to get that " failure to thrive " label of her. She > > > started > > >> eating bread and cookies around the age of about a year but we had > > > to be > > >> careful. She would get horrible diarahaea. It was a slow and > > > steady thing. By the > > >> age of 2 she was doing better and we added other things. By the age > > > of 7 she > > >> was still on a watchful diet but not as intense. As she grew her > body > > >> accepted more and more. She started ice cream but would only have > > > that on Fridays > > >> (to get through the weekend). She even had 1% milk in her cereal. > > >> > > >> Once we had control of her bowels (yea and then there was the > > > constipation > > >> thing) she also had to drink ensure. She loved it but could only > > > have it twice > > >> a week. We spent years and years trying desperately to put weight > > > on her. > > >> Now that she's an adult things have gone the other way. > > >> > > >> To supplement her as a child we gave her crushed calcium that I put > > > in jelly > > >> and/or something she couldn't spit out. That was horrible because > > > she refused > > >> to take it. She could hold that in her mouth for an hour! Finally I > > > gave up > > >> because the battle was worse than the reason to have it. > > >> > > >> When she could take acidic drinks and foods I fortified her with > > > orange juice > > >> with calcium etc. She also takes tums with calcium. Along with > > > that she > > >> continues to take calcium every day. > > >> > > >> Patty still doesn't drink milk and every now and then she gets > > > whacked if she > > >> eats too much ice cream or things that have milk in them. > > >> > > >> Now, please whatever you do don't wait 24 years to go away with your > > > husband > > >> like I did. It was better than anything I could have ever dreamed > > > of. I > > >> wished I did it a long time ago. Everyone needs a break. > > >> > > >> That time off for the two of us alone was in your words, awesome! > > >> > > >> > > >> > > >> Bonnie, mom to a 23, Patty CHARGE 21, and wife to > > >> > > >> > > >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2006 Report Share Posted March 9, 2006 Bonnie, Carmen stays at the 5th percentile for height and weight, and they both grow proportionately. Her head circ has actually made it on to the the actual " normal " curve--so it is outgrowing her body and height! Carmen has never been tube fed, but interestingly, we feed her the same way you fed Patty all those years ago. We feed her about 4 ounces every 3 hours--and it used to be 2 ounces every 2 and so on. She can't seem to get more than 4 ounces in at a time, and sometimes 3.5 ounces is all she can take. She gets full easily and we could certainly feed her all day long. She's a slow eater and we let her clear her food completely before we give her the next bite. She has had evidence of nasal reflux, but since her choanal atresia repair, we've never seen food come out of her nose, so it's not so severe that the food comes all the way up. I just called her speech pathologist yesterday to determine when the next swallow study should be done because Carmen has only had one and it was when she was 4 months old. She is 20 months now and eats pudding textures, pastas, hot dogs, sausage, pretty much any of the gerber graduate meals. She just can't have anything that has a sauce that's too thin--so we thicken everything. She has a trach so we can easily tell if she can't tolerate something. She has progressed with what she can eat and swallow steadily but very slowly and yes, she just wears those darned outfits out!!!! Thanks Bonnie, I really respect what you've been through and it has taught me a lot!! B, mom to Carmen 20 months (CHARGE) and Zachary 4.5 years > > , > > Please remember that Patty is 21 and I am sure there have been a great deal > of medical advances since she was a baby. > > No, she was never tube fed and yes she struggled to keep on weight. It was a > battle for her. I don't know if it was because of her food coming out of her > nose, lack of swallowing, reflux, her pneumonia's, ear infections, lactose > intollerance....But I think it was all of that and more. We had to feed her two > ounces every two hours for months. Feeding her took over a half hour so it > seemed that is all we did. Then it was three ounces every three hours etc. We > even had to do it during the night. Oh would and I argue on who's turn > it was and to be honest we didn't follow that schedule so closely after about > a month after she was home. I felt it was more important for her to at least > sleep as much as possible for her health. We were also told that although she > wasn't ON the growth chart she was following it so not to worry. > > I realize now that we didn't have insurance so little was done medically. I > think if we had insurance she might have been tube fed as an infant. Then she > could have just focused on being. > > Patty had gotten so much better at eating by the time she was 20 months old. > But I used to garden, can and freeze my own fruits and vegetables, cook > without salt, grind up our meals for her.... It wasn't just the calcium and > carbohydrates that I wanted her to have, I wanted her to be nutritionally strong. I > even used have tofu in our diet. Not anymore! > > I am just wondering how much Carmen weighs? Is her height near or at the 5th > percentile too? Patty's weight and height increased as they were supposed to > though they were both below. > > I would never suggest what to do because I don't know your child. In the end > of all this Patty thrived. Plus, she really got tons of use out of her > clothes. Kris grew out of everything but I can honestly say Patty wore out some > outfits! > > Bonnie, mom to a 23, Patty CHARGE 21, and wife to > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2006 Report Share Posted March 10, 2006 , Yes, I remember it all so well now that you are reminding me more. I do have to admit I hated hot dogs. They were often what choked her. So did lettuce as she got older. That kid put us through tons with choking on food. She also used to hold things in her mouth forever! Sometimes we would think she would be done eating, I would check her mouth, we'd let her down to find at a later time that she was storing her food in her cheeks like a chipmunk. Be alert on that one because I have heard that Patty isn't the only one who did that. Another thing we did was cook a T-bone steak and when we cut the meat off we would freeze it. Boy did she just love to gnaw on it. I think it helped with her teething. Just be careful to get most of the meat and fat off and to watch for sharp edges. In telling this story I feel like my grandmother as I got that Idea from her! Bonnie, mom to a 23, Patty CHARGE 21, and wife to Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2006 Report Share Posted March 11, 2006 Bonnie, Thanks for the frozen meat tip--good protein/cal booster! I have one more (okay " another " --can't promise it will only be one more!) question--I remember a while back you said that Patty made gutteral noises for the most part up until about 2 years old. Am I remembering this correctly? What do you think happened that helped move her speech along? I am thinking that once the jaw muscles have time to strengthen and the tongue moves around appropriately through eating different textures, that the speech comes as a result. So, I'm wondering if when Patty starting eating different textures if her speech improved. And also, can Patty eat whatever she wants now or does she still have trouble with thin liquids or chewing? Does Patty have any idea how helpful her history is to all of us? And I hope she knows how much her newfound independence is inspiring us, too! Thanks so much for helping!!! B > > , > > Yes, I remember it all so well now that you are reminding me more. I do have > to admit I hated hot dogs. They were often what choked her. So did lettuce > as she got older. That kid put us through tons with choking on food. She also > used to hold things in her mouth forever! Sometimes we would think she would > be done eating, I would check her mouth, we'd let her down to find at a later > time that she was storing her food in her cheeks like a chipmunk. Be alert > on that one because I have heard that Patty isn't the only one who did that. > > Another thing we did was cook a T-bone steak and when we cut the meat off we > would freeze it. Boy did she just love to gnaw on it. I think it helped with > her teething. Just be careful to get most of the meat and fat off and to > watch for sharp edges. In telling this story I feel like my grandmother as I got > that Idea from her! > > > > Bonnie, mom to a 23, Patty CHARGE 21, and wife to > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2006 Report Share Posted March 11, 2006 Bonnie, Thanks for the frozen meat tip--good protein/cal booster! I have one more (okay " another " --can't promise it will only be one more!) question--I remember a while back you said that Patty made gutteral noises for the most part up until about 2 years old. Am I remembering this correctly? What do you think happened that helped move her speech along? I am thinking that once the jaw muscles have time to strengthen and the tongue moves around appropriately through eating different textures, that the speech comes as a result. So, I'm wondering if when Patty starting eating different textures if her speech improved. And also, can Patty eat whatever she wants now or does she still have trouble with thin liquids or chewing? Does Patty have any idea how helpful her history is to all of us? And I hope she knows how much her newfound independence is inspiring us, too! Thanks so much for helping!!! B > > , > > Yes, I remember it all so well now that you are reminding me more. I do have > to admit I hated hot dogs. They were often what choked her. So did lettuce > as she got older. That kid put us through tons with choking on food. She also > used to hold things in her mouth forever! Sometimes we would think she would > be done eating, I would check her mouth, we'd let her down to find at a later > time that she was storing her food in her cheeks like a chipmunk. Be alert > on that one because I have heard that Patty isn't the only one who did that. > > Another thing we did was cook a T-bone steak and when we cut the meat off we > would freeze it. Boy did she just love to gnaw on it. I think it helped with > her teething. Just be careful to get most of the meat and fat off and to > watch for sharp edges. In telling this story I feel like my grandmother as I got > that Idea from her! > > > > Bonnie, mom to a 23, Patty CHARGE 21, and wife to > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2006 Report Share Posted March 11, 2006 Bonnie, Thanks for the frozen meat tip--good protein/cal booster! I have one more (okay " another " --can't promise it will only be one more!) question--I remember a while back you said that Patty made gutteral noises for the most part up until about 2 years old. Am I remembering this correctly? What do you think happened that helped move her speech along? I am thinking that once the jaw muscles have time to strengthen and the tongue moves around appropriately through eating different textures, that the speech comes as a result. So, I'm wondering if when Patty starting eating different textures if her speech improved. And also, can Patty eat whatever she wants now or does she still have trouble with thin liquids or chewing? Does Patty have any idea how helpful her history is to all of us? And I hope she knows how much her newfound independence is inspiring us, too! Thanks so much for helping!!! B > > , > > Yes, I remember it all so well now that you are reminding me more. I do have > to admit I hated hot dogs. They were often what choked her. So did lettuce > as she got older. That kid put us through tons with choking on food. She also > used to hold things in her mouth forever! Sometimes we would think she would > be done eating, I would check her mouth, we'd let her down to find at a later > time that she was storing her food in her cheeks like a chipmunk. Be alert > on that one because I have heard that Patty isn't the only one who did that. > > Another thing we did was cook a T-bone steak and when we cut the meat off we > would freeze it. Boy did she just love to gnaw on it. I think it helped with > her teething. Just be careful to get most of the meat and fat off and to > watch for sharp edges. In telling this story I feel like my grandmother as I got > that Idea from her! > > > > Bonnie, mom to a 23, Patty CHARGE 21, and wife to > > > Quote Link to comment Share on other sites More sharing options...
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