Guest guest Posted December 15, 2004 Report Share Posted December 15, 2004 Hello everyone, I have not been on in a long time, but I have been reading the e-mails. I would love some advice. Jonah turned 3 in September and we had an appointment with Dr H. in the beginning of November. She noted how tiny he was, her words " he is as big as a minute " . When she first started him on Periactin, he did really well, but has not gained well in a long time. He has been so constipated even with Miralax that Dr. H. said that we must fix this first before considering a g-tube. Well, he is pooping now, but at a weight check lost a few ounces. We are hoping that maybe this is his real weight now and will start to gain; needless to say we are very worried. He is only 16.4lbs! He does " eat " and still takes bottles and one before bed with cornstarch and one in the middle of the night. Anyway, I am trying very hard to add calories in a healthy way, but can anyone who has a child who is not tube fed give me some ideas about food for a 3 year old who has trouble chewing and swallowing especially when tired. We are hoping to avoid a feeding tube if we can! In every other way, he is doing great! I am sorry this is so long, I think I just needed to get some stuff off my chest. Any comments or advice is greatly appreciated. , Mom to Jonah P.S. we sent in our $ from our Walkathon a while ago, but my friend raised more money for us and I need to send this in. MAGIC gave me the name of the person to send it to, but I forgot who that was, does anyone know? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2004 Report Share Posted December 15, 2004 - First, you can send in your other donations to Dianne s, call her tollfree at 800-3MAGIC3 for the address. She is the Exec. Director. WOW, I knew Jonah was tiny but 16.5lbs at 3. WOW! I unfortunately do not have any experience with a child who has trouble with chewing, etc. I know that when was 3 and didn't gain weight for a whole year, the nutritionist had us giving her refried beans and pinto beans constantly!!!! Helped her constipation too! HA! The pinto beans we would put on a plate and she would literally pick them up with her fingers and put them in her mouth. Refried beans, she loves them spicy! She loved Taco Bell's with Hot Sauce added. Will he drink the high calorie milk shakes we all write about (milk, formula or pediature or Peptamen, carnation instant breakfast, ice cream, and then add flavoring -- fruit, or chocolate sauce, etc). You can get it up to about 400 calories for 5-6 ounces pretty easily. Use a straw and give him a cup/straw while he is watching television or somehow distracted, which somehow makes them drink it more. liked using a spoon with it as well. Hopefully someone with OMD experience will better be able to give you advice than me! > Hello everyone, > I have not been on in a long time, but I have been reading the e- mails. I would love some advice. Jonah turned 3 in September and we had an appointment with Dr H. in the beginning of November. She noted how tiny he was, her words " he is as big as a minute " . When she first started him on Periactin, he did really well, but has not gained well in a long time. He has been so constipated even with Miralax that Dr. H. said that we must fix this first before considering a g-tube. Well, he is pooping now, but at a weight check lost a few ounces. We are hoping that maybe this is his real weight now and will start to gain; needless to say we are very worried. He is only 16.4lbs! > He does " eat " and still takes bottles and one before bed with cornstarch and one in the middle of the night. > > Anyway, I am trying very hard to add calories in a healthy way, but can anyone who has a child who is not tube fed give me some ideas about food for a 3 year old who has trouble chewing and swallowing especially when tired. > We are hoping to avoid a feeding tube if we can! In every other way, he is doing great! I am sorry this is so long, I think I just needed to get some stuff off my chest. > Any comments or advice is greatly appreciated. > , > Mom to Jonah > P.S. we sent in our $ from our Walkathon a while ago, but my friend raised more money for us and I need to send this in. MAGIC gave me the name of the person to send it to, but I forgot who that was, does anyone know? > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2004 Report Share Posted December 16, 2004 Hi , Even though is partially tube fed, I do have some things that work for us. does eat three meals a day plus snacks (we mostly use the tube a night). He finishes every meal with either pudding or yogurt. This way we get more calories into him event though he is too tired to chew. We don't anymore, but you could always add duocal or some other product to the pudding or yogurt for more calories. Does Jonah see a feeding therapist? That has also helped us. Also, before the tube, we saw a nutritionist who helped us to find other ways to add calories. Good luck, Judith, Steve, (RSS) and (non RSS) 4 3/4 year old twins Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2004 Report Share Posted December 16, 2004 what is this concoction that you say is 400 cal per 5-6 ounces? Re: need some advice > > > - > > First, you can send in your other donations to Dianne s, call > her tollfree at 800-3MAGIC3 for the address. She is the Exec. > Director. > > WOW, I knew Jonah was tiny but 16.5lbs at 3. WOW! I unfortunately > do not have any experience with a child who has trouble with > chewing, etc. I know that when was 3 and didn't gain weight > for a whole year, the nutritionist had us giving her refried beans > and pinto beans constantly!!!! Helped her constipation too! HA! > The pinto beans we would put on a plate and she would literally pick > them up with her fingers and put them in her mouth. Refried beans, > she loves them spicy! She loved Taco Bell's with Hot Sauce added. > > Will he drink the high calorie milk shakes we all write about (milk, > formula or pediature or Peptamen, carnation instant breakfast, ice > cream, and then add flavoring -- fruit, or chocolate sauce, etc). > You can get it up to about 400 calories for 5-6 ounces pretty > easily. Use a straw and give him a cup/straw while he is watching > television or somehow distracted, which somehow makes them drink it > more. liked using a spoon with it as well. > > Hopefully someone with OMD experience will better be able to give > you advice than me! > > > > Hello everyone, > > I have not been on in a long time, but I have been reading the e- > mails. I would love some advice. Jonah turned 3 in September and we > had an appointment with Dr H. in the beginning of November. She > noted how tiny he was, her words " he is as big as a minute " . When > she first started him on Periactin, he did really well, but has not > gained well in a long time. He has been so constipated even with > Miralax that Dr. H. said that we must fix this first before > considering a g-tube. Well, he is pooping now, but at a weight > check lost a few ounces. We are hoping that maybe this is his real > weight now and will start to gain; needless to say we are very > worried. He is only 16.4lbs! > > He does " eat " and still takes bottles and one before bed with > cornstarch and one in the middle of the night. > > > > Anyway, I am trying very hard to add calories in a healthy way, > but can anyone who has a child who is not tube fed give me some > ideas about food for a 3 year old who has trouble chewing and > swallowing especially when tired. > > We are hoping to avoid a feeding tube if we can! In every other > way, he is doing great! I am sorry this is so long, I think I just > needed to get some stuff off my chest. > > Any comments or advice is greatly appreciated. > > , > > Mom to Jonah > > P.S. we sent in our $ from our Walkathon a while ago, but my > friend raised more money for us and I need to send this in. MAGIC > gave me the name of the person to send it to, but I forgot who that > was, does anyone know? > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2004 Report Share Posted December 16, 2004 My daughter is exactly same weight as Jonah but she is 25 month old. She eats on her own, but mainly a pediasure based concoction, she has severe gag reflex and gags on anything solid or mushy. She is getting OT for that, only one meal a day we slowly try mushy foods (mash potato, avocado, etc.) and continue till she gags and throw up. She loves to lick spicy and salty foods (chicken drumstick chips) as long as a chunk doesnt get in her mouth. She loves tea, so we give new food drenched with tea. I make decaff tea with half and half and sugar for her. Not much of a calorie source, but it gets her to try new food if she gets tea with it. But her basic meals are pediasure plus cereal plus olive oil (2 teaspoon per meal) and half jar or baby food such as gerger 2 chicken, sweet potato, peas, bananas (we use only the high calorie ones, avoid low cal food like green bean and carrots). She eats 5-6 ounces 5 times a day, totalling about 1200 calories a day. We add one egg yolk to the mix once a day, and mashed avocados (about a quarter of one) to one bottle. Avocados are high in fat and calories, but good fat far as I know and the taste is pretty neutral. Peanut butter could be good, but my daughter doesnt like the taste. Ice cream or high cal shake didnt work for her, she doesnt like anything sweet. I also dip her craker pretzels in cheese sauce but I dont count the calories from thinks like that as total intake is not much. I should say my daughter is not RSS. She is now 26.5 inches and 4 months in GH. She never drank from a bottle, and had NG tube till she was able to spoon feed on her own. Hope this helps, Sabina mother of Naomi 25 months 16.4 lbs 26.5 inches GH, Reglan, Tagamet > Hello everyone, > I have not been on in a long time, but I have been reading the e- mails. I would love some advice. Jonah turned 3 in September and we had an appointment with Dr H. in the beginning of November. She noted how tiny he was, her words " he is as big as a minute " . When she first started him on Periactin, he did really well, but has not gained well in a long time. He has been so constipated even with Miralax that Dr. H. said that we must fix this first before considering a g-tube. Well, he is pooping now, but at a weight check lost a few ounces. We are hoping that maybe this is his real weight now and will start to gain; needless to say we are very worried. He is only 16.4lbs! > He does " eat " and still takes bottles and one before bed with cornstarch and one in the middle of the night. > > Anyway, I am trying very hard to add calories in a healthy way, but can anyone who has a child who is not tube fed give me some ideas about food for a 3 year old who has trouble chewing and swallowing especially when tired. > We are hoping to avoid a feeding tube if we can! In every other way, he is doing great! I am sorry this is so long, I think I just needed to get some stuff off my chest. > Any comments or advice is greatly appreciated. > , > Mom to Jonah > P.S. we sent in our $ from our Walkathon a while ago, but my friend raised more money for us and I need to send this in. MAGIC gave me the name of the person to send it to, but I forgot who that was, does anyone know? > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2004 Report Share Posted December 16, 2004 Hi , I would contact Salem. She is the RSS Division Magic Rep and she will tell you where the money should be sent. As for foods, I would suggest anything soft, pasta with butter, scrambled eggs made with real cream or whole milk and lots of butter and cheese. Also mashed potatos with cheese etc. Other things would be baby ceral with maple syrup and butter or oil. Foods like that. I know you want him to eat healthy but you may have to forgo healthy in favor of high calorie and high fat. You can switich to healthy foods later when he gets more weight and is old enough to understand why he can't eat a Big Mac and fries everyday. Then you can explain that to me. I hope this helps. Ken M > Hello everyone, > I have not been on in a long time, but I have been reading the e- mails. I would love some advice. Jonah turned 3 in September and we had an appointment with Dr H. in the beginning of November. She noted how tiny he was, her words " he is as big as a minute " . When she first started him on Periactin, he did really well, but has not gained well in a long time. He has been so constipated even with Miralax that Dr. H. said that we must fix this first before considering a g-tube. Well, he is pooping now, but at a weight check lost a few ounces. We are hoping that maybe this is his real weight now and will start to gain; needless to say we are very worried. He is only 16.4lbs! > He does " eat " and still takes bottles and one before bed with cornstarch and one in the middle of the night. > > Anyway, I am trying very hard to add calories in a healthy way, but can anyone who has a child who is not tube fed give me some ideas about food for a 3 year old who has trouble chewing and swallowing especially when tired. > We are hoping to avoid a feeding tube if we can! In every other way, he is doing great! I am sorry this is so long, I think I just needed to get some stuff off my chest. > Any comments or advice is greatly appreciated. > , > Mom to Jonah > P.S. we sent in our $ from our Walkathon a while ago, but my friend raised more money for us and I need to send this in. MAGIC gave me the name of the person to send it to, but I forgot who that was, does anyone know? > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 17, 2004 Report Share Posted December 17, 2004 Just a suggestion - keep trying the sweet stuff. When was your child's age, he didn't care for sweets, either. Now, he will eat many sweet things. We have only just discovered oatmeal. He wouldn't eat it earlier. Now, he loves it. You can't imagine how much cream I can pump into a bowl of oatmeal! He also likes the Hershey's milkshakes in the dairy case at the grocery store. They cost a bit over a dollar and are very high in calories, especially the vanilla cream flavor. I think it is over 300 calories for 4 ounces. I hope your child develops a sweet tooth, too. It makes it easier to get a few more calories into them. Conny, great-aunt to , 32 months old. SGA > > Hello everyone, > > I have not been on in a long time, but I have been reading the e- > mails. I would love some advice. Jonah turned 3 in September and we > had an appointment with Dr H. in the beginning of November. She > noted how tiny he was, her words " he is as big as a minute " . When > she first started him on Periactin, he did really well, but has not > gained well in a long time. He has been so constipated even with > Miralax that Dr. H. said that we must fix this first before > considering a g-tube. Well, he is pooping now, but at a weight check > lost a few ounces. We are hoping that maybe this is his real weight > now and will start to gain; needless to say we are very worried. He > is only 16.4lbs! > > He does " eat " and still takes bottles and one before bed with > cornstarch and one in the middle of the night. > > > > Anyway, I am trying very hard to add calories in a healthy way, but > can anyone who has a child who is not tube fed give me some ideas > about food for a 3 year old who has trouble chewing and swallowing > especially when tired. > > We are hoping to avoid a feeding tube if we can! In every other > way, he is doing great! I am sorry this is so long, I think I just > needed to get some stuff off my chest. > > Any comments or advice is greatly appreciated. > > , > > Mom to Jonah > > P.S. we sent in our $ from our Walkathon a while ago, but my friend > raised more money for us and I need to send this in. MAGIC gave me > the name of the person to send it to, but I forgot who that was, does > anyone know? > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 17, 2004 Report Share Posted December 17, 2004 Thanks, I sure will. I know from my own experience, the older I get, the more I like things I should stay away from!! Sabina > > > Hello everyone, > > > I have not been on in a long time, but I have been reading the e- > > mails. I would love some advice. Jonah turned 3 in September and > we > > had an appointment with Dr H. in the beginning of November. She > > noted how tiny he was, her words " he is as big as a minute " . When > > she first started him on Periactin, he did really well, but has not > > gained well in a long time. He has been so constipated even with > > Miralax that Dr. H. said that we must fix this first before > > considering a g-tube. Well, he is pooping now, but at a weight > check > > lost a few ounces. We are hoping that maybe this is his real > weight > > now and will start to gain; needless to say we are very worried. He > > is only 16.4lbs! > > > He does " eat " and still takes bottles and one before bed with > > cornstarch and one in the middle of the night. > > > > > > Anyway, I am trying very hard to add calories in a healthy way, > but > > can anyone who has a child who is not tube fed give me some ideas > > about food for a 3 year old who has trouble chewing and swallowing > > especially when tired. > > > We are hoping to avoid a feeding tube if we can! In every other > > way, he is doing great! I am sorry this is so long, I think I just > > needed to get some stuff off my chest. > > > Any comments or advice is greatly appreciated. > > > , > > > Mom to Jonah > > > P.S. we sent in our $ from our Walkathon a while ago, but my > friend > > raised more money for us and I need to send this in. MAGIC gave me > > the name of the person to send it to, but I forgot who that was, > does > > anyone know? > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 17, 2004 Report Share Posted December 17, 2004 Me too! Chocolate, especially! Conny > > > > Hello everyone, > > > > I have not been on in a long time, but I have been reading the > e- > > > mails. I would love some advice. Jonah turned 3 in September and > > we > > > had an appointment with Dr H. in the beginning of November. She > > > noted how tiny he was, her words " he is as big as a minute " . > When > > > she first started him on Periactin, he did really well, but has > not > > > gained well in a long time. He has been so constipated even with > > > Miralax that Dr. H. said that we must fix this first before > > > considering a g-tube. Well, he is pooping now, but at a weight > > check > > > lost a few ounces. We are hoping that maybe this is his real > > weight > > > now and will start to gain; needless to say we are very worried. > He > > > is only 16.4lbs! > > > > He does " eat " and still takes bottles and one before bed with > > > cornstarch and one in the middle of the night. > > > > > > > > Anyway, I am trying very hard to add calories in a healthy way, > > but > > > can anyone who has a child who is not tube fed give me some ideas > > > about food for a 3 year old who has trouble chewing and > swallowing > > > especially when tired. > > > > We are hoping to avoid a feeding tube if we can! In every other > > > way, he is doing great! I am sorry this is so long, I think I > just > > > needed to get some stuff off my chest. > > > > Any comments or advice is greatly appreciated. > > > > , > > > > Mom to Jonah > > > > P.S. we sent in our $ from our Walkathon a while ago, but my > > friend > > > raised more money for us and I need to send this in. MAGIC gave > me > > > the name of the person to send it to, but I forgot who that was, > > does > > > anyone know? > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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