Guest guest Posted June 13, 2004 Report Share Posted June 13, 2004 Howdy Folks! in Virginia here. Connor and I will be at convention starting at about 1:00 p.m. on Wednesday. I'm not sure when we see Dr. H. yet, but would love to meet all of our friends from the list serve. If any of you read my earlier post about being in a sticky wicket, I'd still appreciate any advice or wisdom directed our way. I'm going to have to make a decision here soon and I've received a few responses. However, wisdom come's in numbers and I would appreciate your info. Let me ask some broad questions and have you all answer them. Is it not " normal " for a new treatment (oral desensitation, lateral training, chewing exercises,) to work for a few days, may be even a week, and then the child completely rejects the training and the knowledge gained? Dysphagia returns. The child rejects anthing put in their mouth (food included). Is it normal for your RSS child to have what little appetite they have affected by teething, the common cold, allergies, a bad day, the terrible two's and just about anything under the sun? Would you all say (if your child is termed an " eater " ),that five days of starvation existence followed by one day of phenomenal eating is " normal? " Has any of your children initially responded to new, high calorie foods well, only then to reject them the next day or week? What works best? A rigid food schedule or grazing? The type of eating where the " eating " RSS child can obtain food, even if it's in small quantities? A typical day for us goes like this. Last night, Connor devoured three tablespoons of Hamburger Helper: Cheeseburger flavor. Tonight, he wouldn't touch it. Five days ago, Connor ate three slices of a Granny Apple. Today, he couldn't even chew one. It was all spitted out. A week ago, Connor ate four Dorito chips. Chewed and swallowed well. Tonight, they gave him a gagging and barfing attack. We used to be able to give him yougurt with whipping cream mixed in. Now we can't due to a lactose sensitivity. He used to like hard boiled eggs. Now he won't touch them. Bacon (a hard food to chew and laterilize) is consumed with utter abandon. Vanilla pudding can bring on a dysphagia attack. Can any of you relate to what I'm saying here? No matter what I try with Connor, it simply doesn't last long. I've accepted that this is the nature of RSS and rather than stessing over it, I just try something new, or reintroduce something we havne't done for a few months. I count our blessings that so far, I've been able to stay one step ahead of Connor. He's gaining. His head is growing. Developmentally he's right on target. It is a constant struggle, but I know that " this too shall pass. " Please help. Any advice. Any words you would offer my friend would be so appreciated. Mother to Graham 7 - ADD; Cameron 4; Connor IUGR SGA/RSS Periactin, Zantac, Assymetry, Ciphosis. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2004 Report Share Posted June 13, 2004 , Here are my responses to your questions: > Is it not " normal " for a new treatment (oral desensitation, lateral > training, chewing exercises,) to work for a few days, may be even a > week, and then the child completely rejects the training and the > knowledge gained? Dysphagia returns. The child rejects anthing put > in their mouth (food included). I don't know what you would call " normal " , but after years and years of int= ensive therapy including 2 weeks at a hospital feeding program, my son has struggled with = this issue. As I look back on the situation, I wonder if it has anything to do with his= processing, because he does the same thing with academics at school. > > Is it normal for your RSS child to have what little appetite they > have affected by teething, the common cold, allergies, a bad day, > the terrible two's and just about anything under the sun? Yes, of course! > > Would you all say (if your child is termed an " eater " ),that five > days of starvation existence followed by one day of phenomenal > eating is " normal? " > While my RSS son doesn't really fit the profile to answer this question, my= non-RSS son is a very picker eater as well, and is also small for his age most likely due = to not eating too much. I think for a typical toddler this may be the norm, and doctors usua= lly aren't concerned if the child is healthy & continues to gain weight. > Has any of your children initially responded to new, high calorie > foods well, only then to reject them the next day or week? > > What works best? A rigid food schedule or grazing? The type of > eating where the " eating " RSS child can obtain food, even if it's in > small quantities? > will say he " likes " a particular food, and eat it or request it for= awhile. Then, all of a sudden, he doesn't like it anymore. Sometimes it is one day and somet= imes he'll eat it for a few weeks. The truth is doesn't really " like " too many fo= ods – it is just that if he has to eat, he prefers certain foods/textures over others. Give= n the choice though, would choose never to eat & just have tube feedings. > Can any of you relate to what I'm saying here? No matter what I try > with Connor, it simply doesn't last long. I've accepted that this > is the nature of RSS and rather than stessing over it, I just try > something new, or reintroduce something we havne't done for a few > months. Yes, I can relate, and I am sure many others can too. I am not sure whethe= r this is an issue of RSS or just related to the eating/sensory dysintegration problems = themselves. either way, when you mix the two together, you are bound to have difficulti= es. Anyway, keep your chin up and try to realize that whatever difficulty Connor has ea= ting that it is not your fault - i.e. the way you feed him, present food to him, etc. For = many years I did think it was my fualt, mostly because I had little or no patience with him = when it came to eating. When he was Connor's age, he always did much better with the thera= pist than with me, probably because I was so tense. Now, I have probably have more = patience with him, because I have somewhat surrendered and don't " fight " with him ab= out it anymore. Kim C. 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 100% identify with your feeding issues with Connor! Jillian (age 2) takes in 150 cals one day by mouth and 10 the next (she is predominantly GT fed). For a week she ate cheerios, now flings them across the room. The only thing she hasn't gone off yet is cheese! Everything else is hit and miss. Chewing and lateralization " therapies " are interseting to her one day and cause gagging the next. It is so frustrating. And I wonder how much of it is caused by merely being 2?? As a little background history, Jillie was unable to feed by mouth at birth as her jaw recession was very severe and her tongue would obstruct her airway at times as it was so far back in her mouth. She had to have her tongue sewn to her lip for the first year of her life till her jaw grew out a little. She also vomited constantly, aspirated into her lungs numerous times necessitating many ICU admissions. Her lungs are somewhat damaged by the aspirations. So she was prevented from eating normally in the first year of life, developed a severe oral aversion and had the RSS " don't feel hunger " problem. Personally speaking as regards what works for Jillie I had to put her on a schedule. I found when I went with the flow (much more fitting to my personality), I was apt to let other things interupt the feedings. Now I sit her at the table 3 times a day (for an hour at a time - she's very slow to eat) and give her snacks on the floor 1-2 times a day (15 mins). I present one thing at a time. When she no longer will take that item, move onto the next, saving high cal or favorite foods till last. It's slow and painful. However, she knows she is at the table for the hour and is resigned to eating at least something as I remove all distracting things away from her. There's nothing else for her to do! Seems strict but nothing else has worked. The last 2 weeks, she has averaged 170 cals by mouth a day and 200 cc water. The absolute most she has ever taken!! With regards to your therapist friend, I feel for you. I think it is hard for one peson to be a friend and a professional as there is a boundary that is crossed and feelings that can then be hurt. She is too close to you and is misconstruing constructive feedback for being personally attacked. What I would personally do is write her a letter cataloging what help she has been to Conner and gently explaining what doesn't work. There are few " experts " in feeding the RSS kid so the therapists that are working with them have to be willing to learn from parents and those with RSS experience. Best wishes, > Howdy Folks! > > in Virginia here. Connor and I will be at convention starting > at about 1:00 p.m. on Wednesday. I'm not sure when we see Dr. H. > yet, but would love to meet all of our friends from the list serve. > > If any of you read my earlier post about being in a sticky wicket, > I'd still appreciate any advice or wisdom directed our way. I'm > going to have to make a decision here soon and I've received a few > responses. However, wisdom come's in numbers and I would appreciate > your info. > > Let me ask some broad questions and have you all answer them. > > Is it not " normal " for a new treatment (oral desensitation, lateral > training, chewing exercises,) to work for a few days, may be even a > week, and then the child completely rejects the training and the > knowledge gained? Dysphagia returns. The child rejects anthing put > in their mouth (food included). > > Is it normal for your RSS child to have what little appetite they > have affected by teething, the common cold, allergies, a bad day, > the terrible two's and just about anything under the sun? > > Would you all say (if your child is termed an " eater " ),that five > days of starvation existence followed by one day of phenomenal > eating is " normal? " > > Has any of your children initially responded to new, high calorie > foods well, only then to reject them the next day or week? > > What works best? A rigid food schedule or grazing? The type of > eating where the " eating " RSS child can obtain food, even if it's in > small quantities? > > A typical day for us goes like this. Last night, Connor devoured > three tablespoons of Hamburger Helper: Cheeseburger flavor. > Tonight, he wouldn't touch it. Five days ago, Connor ate three > slices of a Granny Apple. Today, he couldn't even chew one. > It was all spitted out. A week ago, Connor ate four Dorito chips. > Chewed and swallowed well. Tonight, they gave him a gagging and > barfing attack. We used to be able to give him yougurt with > whipping cream mixed in. Now we can't due to a lactose > sensitivity. He used to like hard boiled eggs. Now he won't touch > them. Bacon (a hard food to chew and laterilize) is consumed with > utter abandon. Vanilla pudding can bring on a dysphagia attack. > > Can any of you relate to what I'm saying here? No matter what I try > with Connor, it simply doesn't last long. I've accepted that this > is the nature of RSS and rather than stessing over it, I just try > something new, or reintroduce something we havne't done for a few > months. I count our blessings that so far, I've been able to stay > one step ahead of Connor. He's gaining. His head is growing. > Developmentally he's right on target. It is a constant struggle, > but I know that " this too shall pass. " > > Please help. Any advice. Any words you would offer my friend would > be so appreciated. > > > Mother to Graham 7 - ADD; Cameron 4; Connor IUGR SGA/RSS Periactin, > Zantac, Assymetry, Ciphosis. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2004 Report Share Posted June 14, 2004 Dear , I always say that the first thing always does, in reaction to anything (like a cold, fever, bad day, tuesday, whatever!) is to quit eating and the second thing he does is quit drinking. It is absolutely terrifying. We spend weeks getting a few extra ounces on him and then in a week, he can drop 1-2 POUNDS off his little body. And everything else you have described sounds at least a little bit familiar. We don't get the very much of the vomitting, but the gagging and refusing things that worked fine last week.... It just rings a bell. Conny, 's great-aunt > Howdy Folks! > > in Virginia here. Connor and I will be at convention starting > at about 1:00 p.m. on Wednesday. I'm not sure when we see Dr. H. > yet, but would love to meet all of our friends from the list serve. > > If any of you read my earlier post about being in a sticky wicket, > I'd still appreciate any advice or wisdom directed our way. I'm > going to have to make a decision here soon and I've received a few > responses. However, wisdom come's in numbers and I would appreciate > your info. > > Let me ask some broad questions and have you all answer them. > > Is it not " normal " for a new treatment (oral desensitation, lateral > training, chewing exercises,) to work for a few days, may be even a > week, and then the child completely rejects the training and the > knowledge gained? Dysphagia returns. The child rejects anthing put > in their mouth (food included). > > Is it normal for your RSS child to have what little appetite they > have affected by teething, the common cold, allergies, a bad day, > the terrible two's and just about anything under the sun? > > Would you all say (if your child is termed an " eater " ),that five > days of starvation existence followed by one day of phenomenal > eating is " normal? " > > Has any of your children initially responded to new, high calorie > foods well, only then to reject them the next day or week? > > What works best? A rigid food schedule or grazing? The type of > eating where the " eating " RSS child can obtain food, even if it's in > small quantities? > > A typical day for us goes like this. Last night, Connor devoured > three tablespoons of Hamburger Helper: Cheeseburger flavor. > Tonight, he wouldn't touch it. Five days ago, Connor ate three > slices of a Granny Apple. Today, he couldn't even chew one. > It was all spitted out. A week ago, Connor ate four Dorito chips. > Chewed and swallowed well. Tonight, they gave him a gagging and > barfing attack. We used to be able to give him yougurt with > whipping cream mixed in. Now we can't due to a lactose > sensitivity. He used to like hard boiled eggs. Now he won't touch > them. Bacon (a hard food to chew and laterilize) is consumed with > utter abandon. Vanilla pudding can bring on a dysphagia attack. > > Can any of you relate to what I'm saying here? No matter what I try > with Connor, it simply doesn't last long. I've accepted that this > is the nature of RSS and rather than stessing over it, I just try > something new, or reintroduce something we havne't done for a few > months. I count our blessings that so far, I've been able to stay > one step ahead of Connor. He's gaining. His head is growing. > Developmentally he's right on target. It is a constant struggle, > but I know that " this too shall pass. " > > Please help. Any advice. Any words you would offer my friend would > be so appreciated. > > > Mother to Graham 7 - ADD; Cameron 4; Connor IUGR SGA/RSS Periactin, > Zantac, Assymetry, Ciphosis. Quote Link to comment Share on other sites More sharing options...
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