Guest guest Posted October 16, 2003 Report Share Posted October 16, 2003 I would love to hear from anyone who has had trouble not just with weight gain, but with feeding difficulties. Not so much a fussy eater, just not a very big eater. Eating and drinking has never been s favorite past time, he improved with the additon of more iron to his diet, but really only became interested in eating at 18 months on a holiday to Vic to visit my Mum and Dad. My poor Dad, 'Pa' offered him a little piece of toast and jam every day for 5 weeks and low and behole on the last day there he ate a 1 " strip of toast. En route to Melb airport we stopped for lunch and he was pinching chips (fries) off our plates. My eyes filled with tears. And dont mention vegies - He learned to shake his head at those at a very early age!! Thank goodness for Vitabdeck! I have scoured supermarket shelves for snacks/puddings with lots of fat and have found the best ones come from the U.S. Hunts Banana Cream Pie Pudding being his favorite 7g fat in 100g tub! Can't wait til he's drinking from a cup/straw so he can have Banana Smoothies!!!! Lee mum to 20m cf Bunbury, WA, Aust --------------------------------- Yahoo! Personals - New people, new possibilities. FREE for a limited time! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 2003 Report Share Posted October 18, 2003 Hi Lee, Our daughter, , has been a bit of a fussy eater from the start but our real problem is just getting her to put food in her mouth and swallow it. also has reflux and I believe that she learned not to eat before she was dx'd with CF and Reflux. It hurt to eat so she didn't. She loves veggies so we just load them with butter, most things that you would think kids like to eat, like pizza and pasta and puddings, we have a hard time getting her to eat. The weird thing is, she loves spicy food. I used to put a bit of salsa in her eggs and she would tear into them (now she won't even eat them with the salsa) She loves things with pepper on them so I let her have a fair amount of pepper with her salty stuff. She still doesn't eat enough. We did end up with a g-tube. It was an adventure getting used to it but on those days when she eats nothing it is a safety net for us. she gets a small tube feed almost every day. We worked very hard to avoid a g-tube but now that we have had it for a long time it is really a god send. I understand what you are going through. , mom of , 5 with CF Southeastern Pennsylvania, USA Feeding difficulties I would love to hear from anyone who has had trouble not just with weight gain, but with feeding difficulties. Not so much a fussy eater, just not a very big eater. Eating and drinking has never been s favorite past time, he improved with the additon of more iron to his diet, but really only became interested in eating at 18 months on a holiday to Vic to visit my Mum and Dad. My poor Dad, 'Pa' offered him a little piece of toast and jam every day for 5 weeks and low and behole on the last day there he ate a 1 " strip of toast. En route to Melb airport we stopped for lunch and he was pinching chips (fries) off our plates. My eyes filled with tears. And dont mention vegies - He learned to shake his head at those at a very early age!! Thank goodness for Vitabdeck! I have scoured supermarket shelves for snacks/puddings with lots of fat and have found the best ones come from the U.S. Hunts Banana Cream Pie Pudding being his favorite 7g fat in 100g tub! Can't wait til he's drinking from a cup/straw so he can have Banana Smoothies!!!! Lee mum to 20m cf Bunbury, WA, Aust --------------------------------- Yahoo! Personals - New people, new possibilities. FREE for a limited time! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 2003 Report Share Posted October 19, 2003 I guess I should quickly introduce myself to the list before I reply! My son, Matt, has CF. He is almost 4 yrs old and has done well so far. Matt was also 11 weeks early, born with Meconium Ileus, developed a bowel infection which required 3 surgeries and spending his first 4 1/2 months in the NICU. He is happily attending preschool these days and we're keeping our fingers crossed that his second year of preschool will go smoothly health wise! Because Matt was premature and was intubated plus on a feeding tube for the first 8 months of life, he does have some oral sensory issues. This means getting him to try new textures in his mouth is extremely slow going. After he was discharged from the NICU we were followed by an occupational therapist, and he still is through his preschool program, that worked with him on feeding and texture issues. It kind of boils down to this - food play, messy but fun, will help him get used to the feel of the different textures which will eventually translate into the willingness to put the food into his mouth. The mouth is so full of nerve endings that it is very sensitive and different textures can just put some kids almost over the edge but if they get used to feeling it with their hands first it helps them get comfortable with the texture. Besides food play we spent a lot of time playing with shaving cream in the bath tub and using finger paints. You might see if you can arrange some therapy sessions with an occupational therapist. Also, the Nutritionist at our CF Clinic has us add powdered milk to his whole milk and then we use this high calorie milk to make Scandishakes. The thinking is, since he likes to drink milk we try to pack as many calories as we can into it which takes a little pressure of the quanity of food he has to eat. So far we've avoided the feeding tube and he has continued to gain weight. I hope this helps! Feeding difficulties I would love to hear from anyone who has had trouble not just with weight gain, but with feeding difficulties. Not so much a fussy eater, just not a very big eater. Eating and drinking has never been s favorite past time, he improved with the additon of more iron to his diet, but really only became interested in eating at 18 months on a holiday to Vic to visit my Mum and Dad. My poor Dad, 'Pa' offered him a little piece of toast and jam every day for 5 weeks and low and behole on the last day there he ate a 1 " strip of toast. En route to Melb airport we stopped for lunch and he was pinching chips (fries) off our plates. My eyes filled with tears. And dont mention vegies - He learned to shake his head at those at a very early age!! Thank goodness for Vitabdeck! I have scoured supermarket shelves for snacks/puddings with lots of fat and have found the best ones come from the U.S. Hunts Banana Cream Pie Pudding being his favorite 7g fat in 100g tub! Can't wait til he's drinking from a cup/straw so he can have Banana Smoothies!!!! Lee mum to 20m cf Bunbury, WA, Aust --------------------------------- Yahoo! Personals - New people, new possibilities. FREE for a limited time! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2003 Report Share Posted October 21, 2003 , Welcome to the group. It sounds like Matt is doing well. I am glad to hear it. The food play sounds fun. Gale > I guess I should quickly introduce myself to the list before I reply! My son, Matt, has CF. He is almost 4 yrs old and has done well so far. Matt was also 11 weeks early, born with Meconium Ileus, developed a bowel infection which required 3 surgeries and spending his first 4 1/2 months in the NICU. He is happily attending preschool these days and we're keeping our fingers crossed that his second year of preschool will go smoothly health wise! > > Because Matt was premature and was intubated plus on a feeding tube for the first 8 months of life, he does have some oral sensory issues. This means getting him to try new textures in his mouth is extremely slow going. After he was discharged from the NICU we were followed by an occupational therapist, and he still is through his preschool program, that worked with him on feeding and texture issues. It kind of boils down to this - food play, messy but fun, will help him get used to the feel of the different textures which will eventually translate into the willingness to put the food into his mouth. The mouth is so full of nerve endings that it is very sensitive and different textures can just put some kids almost over the edge but if they get used to feeling it with their hands first it helps them get comfortable with the texture. Besides food play we spent a lot of time playing with shaving cream in the bath tub and using finger paints. You might see if you can arrange some therapy sessions with an occupational therapist. Also, the Nutritionist at our CF Clinic has us add powdered milk to his whole milk and then we use this high calorie milk to make Scandishakes. The thinking is, since he likes to drink milk we try to pack as many calories as we can into it which takes a little pressure of the quanity of food he has to eat. So far we've avoided the feeding tube and he has continued to gain weight. > > I hope this helps! > > > > Feeding difficulties > > > I would love to hear from anyone who has had trouble not just with weight gain, but with feeding difficulties. Not so much a fussy eater, just not a very big eater. Eating and drinking has never been s favorite past time, he improved with the additon of more iron to his diet, but really only became interested in eating at 18 months on a holiday to Vic to visit my Mum and Dad. My poor Dad, 'Pa' offered him a little piece of toast and jam every day for 5 weeks and low and behole on the last day there he ate a 1 " strip of toast. En route to Melb airport we stopped for lunch and he was pinching chips (fries) off our plates. My eyes filled with tears. And dont mention vegies - He learned to shake his head at those at a very early age!! Thank goodness for Vitabdeck! I have scoured supermarket shelves for snacks/puddings with lots of fat and have found the best ones come from the U.S. Hunts Banana Cream Pie Pudding being his favorite 7g fat in 100g tub! > Can't wait til he's drinking from a cup/straw so he can have Banana Smoothies!!!! > Lee mum to 20m cf > Bunbury, WA, Aust > > > > --------------------------------- > Yahoo! Personals > - New people, new possibilities. FREE for a limited time! > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2003 Report Share Posted October 21, 2003 , This is great advice! It is often a sensory issue for many cfers who were also preemie, but in our case, throwing up everytime they're fed has a great deal to do with their aversion. We soldier on and hope that the reflux lessens and their appetite and tolerance for food increases. Thanks! C Mommy to Mick and Alli, 3.5 yo twins wcf also born 14 weeks too early. --- KEVIN RUCKERSFELDT wrote: > I guess I should quickly introduce myself to the > list before I reply! My son, Matt, has CF. He is > almost 4 yrs old and has done well so far. Matt was > also 11 weeks early, born with Meconium Ileus, > developed a bowel infection which required 3 > surgeries and spending his first 4 1/2 months in the > NICU. He is happily attending preschool these days > and we're keeping our fingers crossed that his > second year of preschool will go smoothly health > wise! > > Because Matt was premature and was intubated plus on > a feeding tube for the first 8 months of life, he > does have some oral sensory issues. This means > getting him to try new textures in his mouth is > extremely slow going. After he was discharged from > the NICU we were followed by an occupational > therapist, and he still is through his preschool > program, that worked with him on feeding and texture > issues. It kind of boils down to this - food play, > messy but fun, will help him get used to the feel of > the different textures which will eventually > translate into the willingness to put the food into > his mouth. The mouth is so full of nerve endings > that it is very sensitive and different textures can > just put some kids almost over the edge but if they > get used to feeling it with their hands first it > helps them get comfortable with the texture. > Besides food play we spent a lot of time playing > with shaving cream in the bath tub and using finger > paints. You might see if you can arrange some > therapy sessions with an occupational therapist. > Also, the Nutritionist at our CF Clinic has us add > powdered milk to his whole milk and then we use this > high calorie milk to make Scandishakes. The > thinking is, since he likes to drink milk we try to > pack as many calories as we can into it which takes > a little pressure of the quanity of food he has to > eat. So far we've avoided the feeding tube and he > has continued to gain weight. > > I hope this helps! > > > > Feeding difficulties > > > I would love to hear from anyone who has had > trouble not just with weight gain, but with feeding > difficulties. Not so much a fussy eater, just not a > very big eater. Eating and drinking has never been > s favorite past time, he improved with the > additon of more iron to his diet, but really only > became interested in eating at 18 months on a > holiday to Vic to visit my Mum and Dad. My poor > Dad, 'Pa' offered him a little piece of toast and > jam every day for 5 weeks and low and behole on the > last day there he ate a 1 " strip of toast. En route > to Melb airport we stopped for lunch and he was > pinching chips (fries) off our plates. My eyes > filled with tears. And dont mention vegies - He > learned to shake his head at those at a very early > age!! Thank goodness for Vitabdeck! I have scoured > supermarket shelves for snacks/puddings with lots of > fat and have found the best ones come from the U.S. > Hunts Banana Cream Pie Pudding being his favorite 7g > fat in 100g tub! > Can't wait til he's drinking from a cup/straw so > he can have Banana Smoothies!!!! > Lee mum to 20m cf > Bunbury, WA, Aust > > > > --------------------------------- > Yahoo! Personals > - New people, new possibilities. FREE for a > limited time! > > [Non-text portions of this message have been > removed] > > > > ------------------------------------------- > The opinions and information exchanged on this > list should IN NO WAY > be construed as medical advice. > > PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY > MEDICATIONS OR TREATMENTS. > > ------------------------------------ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 2003 Report Share Posted October 22, 2003 My two daughters, one with CF, one without were both very fussy eaters as children. They would rather not eat than eat something they did not like. Today they are grown, the CF daughter is still fussy about most food and does not like anything too fatty, would never think of drinking whole milk. The non CF daughter watches her weigh and tries to cut back on fat and sugar. You just never know. T. Dunn CTDUNN1@... Quote Link to comment Share on other sites More sharing options...
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