Guest guest Posted June 11, 2004 Report Share Posted June 11, 2004 Howdy Folks, here in VA. Connor, my son who has SGA/RSS is having issues with eating again. I've kept you all updated and the advice I'm receiving is wonderful. Thank you so much. No more night time hypoglycemia with the tblsp. of cornstarch in the bottle. Hip Hip Hooray! Once again, I need the collective wisdom of our group, but this time it's regarding the education of a speech therapist - who happens to be a very dear friend and a fellow church member. Simply put, we are close. I will always be grateful for 's guidance and intervention. It was she who walked across the fellowship hall and asked me that life chainging question, " What's wrong with Connor? " She got me in touch with the geneticist who made the RSS call. She recommended the G.I. Doc who has done wonders with Connor's weight gain and who coordinates the care team that works with me. She recommended the local Pediatrician who drops everything if Connor is sick. I owe this friend much gratitude, respect and kindness. She also is a Sunday School teacher to my middle son. I respect and admire her profession as it is crucial to Connor's growth and well being. Sooooo, having said all that, do you all understand how hard it could be to tell someone, " I'm sorry, but your treatment therapies don't work on Connor any longer and basically, I've been ignoring everything you've said for the last two months? " Well, she figured it out. (Smart cookie) She also made a couple of loaded statements that need addressing in the context of how to care for RSS kids. 1. wants to put Connor on a SCHEDULE. Schedules for eating. Schedules for table time. Schedules of foods. etc etc etc. She also made the comment that when he eats, I'm giving him to hard of food to chew and swallow. Well, yes, on that day, Connor didn't do well with the apple, but two days ago, he ate five slices beautifully. I told her flat out, that schedules don't work for Connor. AT the table, Connor will eat three bites, sometimes more and than be done. The older he gets and the more he realizes that he's not naturally hungry, he is fighting me on food. He shakes his head. Swats at the spoon, runs away from the table, etc, etc, etc. I know you've all been there. We try to keep food a positive experience. But any time you mess with his mouth, especially as he is teething up a storm right now, the results are a lowered appetite. The therapies I'm supposed to be doing with him for chewing and biting make him gag and scream. So, why is it that when is here, he does beautifully for her, eats well and does his therapy well, but when she's gone, it's not that great. So, in a sense, doesn't believe me about his difficulties - even though she stated she did. Her comments was, " When I'm here he does fine. " Are you all a little fried yet.... 2. Her second comment which completely fried me was " Don't pigeon hole Connor with the RSS diagnosis. " Translation: Just because he has RSS doesn't mean he can't overcome these problems. Now mind you this is a paraphrase of what she said and I'm filtering this through my perceptions but.... HOW THE HELL AM I SUPPOSED TO TREAT HIM? LIKE HE'S NORMAL IN HIS EATING? THE KID ONLY EATS A HALF OF CUP OF FOOD A DAY AND THREE BOTTLES!!!!! This food consumption happens over a 24 hour period. Connor is a grazer. Food is kept low and available for him. He's hit the terrible two's and table time has not only issues of eating, but issues of sitting for at least 5 minutes in his booster seat, issues of don't throw or bang your fork, issues of don't spit, etc, etc, etc,. My son is 19 months old, has RSS and is emulating his older brothers in table manners or lack thereof. So, we do the positive reinforcement thing and just keep working at it. I figure, he's a toddler and he's learning and we'll deal with the food stuff as best as we can. would have me totally invovled with Connor at meal time which essentially means I would have to ignore the other two children. I think that's not fair. I have three kids who need me just as much as Connor. 3. I understand the roller coaster nature of Connor's condition. Some days are better than others. However, it never, ever really gets better at this point, so instead of treating everything like a crisis (very hard on the nerves) I go with the flow. Thus, if Connor only eats three bites at dinner time, I know in an hour, I'll offer him a snack of something during the movie. I know Connor will go to bed with a bottle. I know that on a good eating day Connor will floor me with how much he consumes. I know though, that it won't last and the next day will be a difficult day for eating. I know I will weigh him bi-weekly to monitor his growth. In my humble opinion, life is fine right now with Connor. He's gaining. He's growing at a rate in between the normal and rss curve. His head is growing. He's developing beautifully and is ahead of schedule in fine motor control and articulation of words. Soooo, I informed , in a loving and quiet way (no screaming or even a strained voice), " I know you are very learned in your profession, but honestly, you don't understand RSS well enough to be making these kinds of statements. " Secondly, " I have to proceed from the fact that Connor has RSS. I'm not pigeon holing him, I'm treating him with the understanding of what this condition does to his body and appetite. " Well, got up and left for her next appointment in tears. I feel like pond scum and I very well may lose one of the best therapists we've had. Any suggestions? Mom to Graham 7 - ADD and Summer School; Cameron 4; Connor - IUGR, SGA/RSS, Ciphosis, Assymetry, Periactin, Zantac, PT, ST. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2004 Report Share Posted June 11, 2004 I responded to your message - but didn't see it posted. Let me know if you somehow got it by e-mail instead. That way I'll know the right way to do it next time. Thanks! - > Howdy Folks, > > here in VA. Connor, my son who has SGA/RSS is having issues > with eating again. I've kept you all updated and the advice I'm > receiving is wonderful. Thank you so much. No more night time > hypoglycemia with the tblsp. of cornstarch in the bottle. Hip Hip > Hooray! > > Once again, I need the collective wisdom of our group, but this time > it's regarding the education of a speech therapist - who happens to > be a very dear friend and a fellow church member. Simply put, we > are close. > > I will always be grateful for 's guidance and intervention. > It was she who walked across the fellowship hall and asked me that > life chainging question, " What's wrong with Connor? " She got me in > touch with the geneticist who made the RSS call. She recommended > the G.I. Doc who has done wonders with Connor's weight gain and who > coordinates the care team that works with me. She recommended the > local Pediatrician who drops everything if Connor is sick. I owe > this friend much gratitude, respect and kindness. She also is a > Sunday School teacher to my middle son. I respect and admire her > profession as it is crucial to Connor's growth and well being. > > Sooooo, having said all that, do you all understand how hard it > could be to tell someone, " I'm sorry, but your treatment therapies > don't work on Connor any longer and basically, I've been ignoring > everything you've said for the last two months? " > > Well, she figured it out. (Smart cookie) She also made a couple of > loaded statements that need addressing in the context of how to care > for RSS kids. > > 1. wants to put Connor on a SCHEDULE. Schedules for > eating. Schedules for table time. Schedules of foods. etc etc > etc. She also made the comment that when he eats, I'm giving him to > hard of food to chew and swallow. Well, yes, on that day, Connor > didn't do well with the apple, but two days ago, he ate five slices > beautifully. I told her flat out, that schedules don't work for > Connor. AT the table, Connor will eat three bites, sometimes more > and than be done. The older he gets and the more he realizes that > he's not naturally hungry, he is fighting me on food. He shakes his > head. Swats at the spoon, runs away from the table, etc, etc, etc. > I know you've all been there. We try to keep food a positive > experience. But any time you mess with his mouth, especially as he > is teething up a storm right now, the results are a lowered > appetite. The therapies I'm supposed to be doing with him for > chewing and biting make him gag and scream. So, why is it that when > is here, he does beautifully for her, eats well and does > his therapy well, but when she's gone, it's not that great. So, in > a sense, doesn't believe me about his difficulties - even > though she stated she did. Her comments was, " When I'm here he does > fine. " Are you all a little fried yet.... > > 2. Her second comment which completely fried me was " Don't pigeon > hole Connor with the RSS diagnosis. " Translation: Just because he > has RSS doesn't mean he can't overcome these problems. Now mind you > this is a paraphrase of what she said and I'm filtering this through > my perceptions but.... > > HOW THE HELL AM I SUPPOSED TO TREAT HIM? LIKE HE'S NORMAL IN HIS > EATING? THE KID ONLY EATS A HALF OF CUP OF FOOD A DAY AND THREE > BOTTLES!!!!! This food consumption happens over a 24 hour period. > Connor is a grazer. Food is kept low and available for him. He's > hit the terrible two's and table time has not only issues of eating, > but issues of sitting for at least 5 minutes in his booster seat, > issues of don't throw or bang your fork, issues of don't spit, etc, > etc, etc,. My son is 19 months old, has RSS and is emulating his > older brothers in table manners or lack thereof. So, we do the > positive reinforcement thing and just keep working at it. I figure, > he's a toddler and he's learning and we'll deal with the food stuff > as best as we can. would have me totally invovled with > Connor at meal time which essentially means I would have to ignore > the other two children. I think that's not fair. I have three kids > who need me just as much as Connor. > > 3. I understand the roller coaster nature of Connor's condition. > Some days are better than others. However, it never, ever really > gets better at this point, so instead of treating everything like a > crisis (very hard on the nerves) I go with the flow. Thus, if > Connor only eats three bites at dinner time, I know in an hour, I'll > offer him a snack of something during the movie. I know Connor will > go to bed with a bottle. I know that on a good eating day Connor > will floor me with how much he consumes. I know though, that it > won't last and the next day will be a difficult day for eating. I > know I will weigh him bi-weekly to monitor his growth. In my humble > opinion, life is fine right now with Connor. He's gaining. He's > growing at a rate in between the normal and rss curve. His head is > growing. He's developing beautifully and is ahead of schedule in > fine motor control and articulation of words. > > Soooo, I informed , in a loving and quiet way (no screaming > or even a strained voice), " I know you are very learned in your > profession, but honestly, you don't understand RSS well enough to be > making these kinds of statements. " Secondly, " I have to proceed > from the fact that Connor has RSS. I'm not pigeon holing him, I'm > treating him with the understanding of what this condition does to > his body and appetite. " > > Well, got up and left for her next appointment in tears. I > feel like pond scum and I very well may lose one of the best > therapists we've had. > > Any suggestions? > > > Mom to Graham 7 - ADD and Summer School; Cameron 4; Connor - IUGR, > SGA/RSS, Ciphosis, Assymetry, Periactin, Zantac, PT, ST. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2004 Report Share Posted June 11, 2004 - I will try and write later as I am late to get the kids. Might I suggest that you trade emails with Cindy Baranoski from Easter Seals, or one of her gang (Connie Swan and Judy Gardner) both of whom have treated multiple RSS kids. Maybe your therapist can continue as the therapist, with some " professional input " from another similarly trained therapist -- rather than it coming from you. Let me know and I can give you their contact information. > Howdy Folks, > > here in VA. Connor, my son who has SGA/RSS is having issues > with eating again. I've kept you all updated and the advice I'm > receiving is wonderful. Thank you so much. No more night time > hypoglycemia with the tblsp. of cornstarch in the bottle. Hip Hip > Hooray! > > Once again, I need the collective wisdom of our group, but this time > it's regarding the education of a speech therapist - who happens to > be a very dear friend and a fellow church member. Simply put, we > are close. > > I will always be grateful for 's guidance and intervention. > It was she who walked across the fellowship hall and asked me that > life chainging question, " What's wrong with Connor? " She got me in > touch with the geneticist who made the RSS call. She recommended > the G.I. Doc who has done wonders with Connor's weight gain and who > coordinates the care team that works with me. She recommended the > local Pediatrician who drops everything if Connor is sick. I owe > this friend much gratitude, respect and kindness. She also is a > Sunday School teacher to my middle son. I respect and admire her > profession as it is crucial to Connor's growth and well being. > > Sooooo, having said all that, do you all understand how hard it > could be to tell someone, " I'm sorry, but your treatment therapies > don't work on Connor any longer and basically, I've been ignoring > everything you've said for the last two months? " > > Well, she figured it out. (Smart cookie) She also made a couple of > loaded statements that need addressing in the context of how to care > for RSS kids. > > 1. wants to put Connor on a SCHEDULE. Schedules for > eating. Schedules for table time. Schedules of foods. etc etc > etc. She also made the comment that when he eats, I'm giving him to > hard of food to chew and swallow. Well, yes, on that day, Connor > didn't do well with the apple, but two days ago, he ate five slices > beautifully. I told her flat out, that schedules don't work for > Connor. AT the table, Connor will eat three bites, sometimes more > and than be done. The older he gets and the more he realizes that > he's not naturally hungry, he is fighting me on food. He shakes his > head. Swats at the spoon, runs away from the table, etc, etc, etc. > I know you've all been there. We try to keep food a positive > experience. But any time you mess with his mouth, especially as he > is teething up a storm right now, the results are a lowered > appetite. The therapies I'm supposed to be doing with him for > chewing and biting make him gag and scream. So, why is it that when > is here, he does beautifully for her, eats well and does > his therapy well, but when she's gone, it's not that great. So, in > a sense, doesn't believe me about his difficulties - even > though she stated she did. Her comments was, " When I'm here he does > fine. " Are you all a little fried yet.... > > 2. Her second comment which completely fried me was " Don't pigeon > hole Connor with the RSS diagnosis. " Translation: Just because he > has RSS doesn't mean he can't overcome these problems. Now mind you > this is a paraphrase of what she said and I'm filtering this through > my perceptions but.... > > HOW THE HELL AM I SUPPOSED TO TREAT HIM? LIKE HE'S NORMAL IN HIS > EATING? THE KID ONLY EATS A HALF OF CUP OF FOOD A DAY AND THREE > BOTTLES!!!!! This food consumption happens over a 24 hour period. > Connor is a grazer. Food is kept low and available for him. He's > hit the terrible two's and table time has not only issues of eating, > but issues of sitting for at least 5 minutes in his booster seat, > issues of don't throw or bang your fork, issues of don't spit, etc, > etc, etc,. My son is 19 months old, has RSS and is emulating his > older brothers in table manners or lack thereof. So, we do the > positive reinforcement thing and just keep working at it. I figure, > he's a toddler and he's learning and we'll deal with the food stuff > as best as we can. would have me totally invovled with > Connor at meal time which essentially means I would have to ignore > the other two children. I think that's not fair. I have three kids > who need me just as much as Connor. > > 3. I understand the roller coaster nature of Connor's condition. > Some days are better than others. However, it never, ever really > gets better at this point, so instead of treating everything like a > crisis (very hard on the nerves) I go with the flow. Thus, if > Connor only eats three bites at dinner time, I know in an hour, I'll > offer him a snack of something during the movie. I know Connor will > go to bed with a bottle. I know that on a good eating day Connor > will floor me with how much he consumes. I know though, that it > won't last and the next day will be a difficult day for eating. I > know I will weigh him bi-weekly to monitor his growth. In my humble > opinion, life is fine right now with Connor. He's gaining. He's > growing at a rate in between the normal and rss curve. His head is > growing. He's developing beautifully and is ahead of schedule in > fine motor control and articulation of words. > > Soooo, I informed , in a loving and quiet way (no screaming > or even a strained voice), " I know you are very learned in your > profession, but honestly, you don't understand RSS well enough to be > making these kinds of statements. " Secondly, " I have to proceed > from the fact that Connor has RSS. I'm not pigeon holing him, I'm > treating him with the understanding of what this condition does to > his body and appetite. " > > Well, got up and left for her next appointment in tears. I > feel like pond scum and I very well may lose one of the best > therapists we've had. > > Any suggestions? > > > Mom to Graham 7 - ADD and Summer School; Cameron 4; Connor - IUGR, > SGA/RSS, Ciphosis, Assymetry, Periactin, Zantac, PT, ST. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2004 Report Share Posted June 13, 2004 Hi , I honestly don't know how you deal with an RSS child's eating habits when its your 3rd child. Our 3rd child just turned 2, so I can completely relate to where you're coming from with the whole control over eating issue - when she's not hungry, she won't eat, end of story. But this is not our RSS/SGA child, so she's growing, and we don't have to worry (it's still frustrating, but on a much lower level!). That being said, we were " lucky " in a way b/c our RSS/SGA child was our 1st, so we could completely concentrate on his eating at this stage ... BUT YOU KNOW WHAT ... it didn't help anyway!!! We tried and tried, spent ages trying to feed him, got very frustrated, etc., and he still hardly gained any weight. If I were in your position, I would not want to expose older children to the struggles we dealt with when we focused meal after meal on trying to get calories into him. I completely agree that you need to go with the flow on this issue and do what works for your family ... and in that context, try to figure out what works for Connor. In our experience, feeding therapies did not work for our son (I'm sure they work for other families). In my opinion and in hindsight, our son's SGA is a medical problem that needed a medical solution - the only thing that finally worked for Tyler was a feeding tube. It took us 4 1/2 years to figure this out, and most mealtimes were a struggle. I think you need to look at your own situation, Connor's overall health, energy levels, weight gain and what works for him. For us, this was complete intervention with a feeding tube plus periactin. Other people may use periactin only or may find there child gets enough calories without any intervention. But I do understand what you mean about not spending your time on therapies that don't work and are negative for Connor and your whole family. Everyone in the family must be remembered. I hope your friend can understand this given a bit of time. You were completely right when you said " I have to proceed from the fact that Connor has RSS. I'm not pigeon holing him, I'm treating him with the understanding of what this condition does to his body and appetite. " We found that feeding therapy was not the right approach with our child b/c it didn't deal with the underlying medical issue. This was not the therapist's fault - simply a fact (note: she did help in a couple of ways, but they were very minor and never got Tyler to the healthy state he's in now since getting the feeding tube). Good luck with finding out what works for Connor. Sounds like you approached the situation well - I hope she can see that she's not a failure just b/c she can't fix it. (Tyler's mum - age 5, 104 cms, 14 kgs - GH & G-Tube since July 2003; - age 4; Kelsey - age 2; in New Zealand) Quote Link to comment Share on other sites More sharing options...
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