Guest guest Posted March 31, 2006 Report Share Posted March 31, 2006 hey debbie, i think i have it i will calla you over weekend - i think you are in my book! Cathie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2006 Report Share Posted March 31, 2006 hey debbie, i think i have it i will calla you over weekend - i think you are in my book! Cathie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2006 Report Share Posted March 31, 2006 Don't think this applies - but behavioral did not work for - it worked in a clinical setting but once we got home and she saw how other were allowed to eat she refused. And as far as quality of life goes - it just wasn't worth the pain on her, me and our family (5 structured meals at 25 minutes each - separately from the family - the entire day revolved around meals - which would have great if she was eating - but she was refusing - it was aweful!). She has therapy three times a week at her school and is making slow but definite progress. Good luck! Lori Myers Spouse - Trent, Children - (8), (5, CHARGE Syndrome, Congenital Heart Defects/TOF Pulmonary Atresia/repaired, ECMO 12 days, Bi-lateral Choanal Atresia, Decanullated Trach, G-button, partial hearing loss, walking as of 12/22/04!, and Emma (3) Dallas, Texas feeding programs OK, who can give me some suggestions on intensive feeding programs? we have done Vital stim, and Lori Overland, I have researched Hopkins, (behavorial) St phs (behavorial), St 's (behavorial) where are the non behavorial intensive programs? i need a place that will focus on the swallowing component. erika receives therapy at school 5x/week at 2x/week at home, we follow the program, but are not making much of any progress. thanks Cathie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2006 Report Share Posted March 31, 2006 Don't think this applies - but behavioral did not work for - it worked in a clinical setting but once we got home and she saw how other were allowed to eat she refused. And as far as quality of life goes - it just wasn't worth the pain on her, me and our family (5 structured meals at 25 minutes each - separately from the family - the entire day revolved around meals - which would have great if she was eating - but she was refusing - it was aweful!). She has therapy three times a week at her school and is making slow but definite progress. Good luck! Lori Myers Spouse - Trent, Children - (8), (5, CHARGE Syndrome, Congenital Heart Defects/TOF Pulmonary Atresia/repaired, ECMO 12 days, Bi-lateral Choanal Atresia, Decanullated Trach, G-button, partial hearing loss, walking as of 12/22/04!, and Emma (3) Dallas, Texas feeding programs OK, who can give me some suggestions on intensive feeding programs? we have done Vital stim, and Lori Overland, I have researched Hopkins, (behavorial) St phs (behavorial), St 's (behavorial) where are the non behavorial intensive programs? i need a place that will focus on the swallowing component. erika receives therapy at school 5x/week at 2x/week at home, we follow the program, but are not making much of any progress. thanks Cathie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2006 Report Share Posted March 31, 2006 Don't think this applies - but behavioral did not work for - it worked in a clinical setting but once we got home and she saw how other were allowed to eat she refused. And as far as quality of life goes - it just wasn't worth the pain on her, me and our family (5 structured meals at 25 minutes each - separately from the family - the entire day revolved around meals - which would have great if she was eating - but she was refusing - it was aweful!). She has therapy three times a week at her school and is making slow but definite progress. Good luck! Lori Myers Spouse - Trent, Children - (8), (5, CHARGE Syndrome, Congenital Heart Defects/TOF Pulmonary Atresia/repaired, ECMO 12 days, Bi-lateral Choanal Atresia, Decanullated Trach, G-button, partial hearing loss, walking as of 12/22/04!, and Emma (3) Dallas, Texas feeding programs OK, who can give me some suggestions on intensive feeding programs? we have done Vital stim, and Lori Overland, I have researched Hopkins, (behavorial) St phs (behavorial), St 's (behavorial) where are the non behavorial intensive programs? i need a place that will focus on the swallowing component. erika receives therapy at school 5x/week at 2x/week at home, we follow the program, but are not making much of any progress. thanks Cathie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2006 Report Share Posted March 31, 2006 We need to talk! Too much to write about, no outside programs suggestions but can tell you what has been going on here with us. Call me - you still have my number? Debbie Matasker feeding programs OK, who can give me some suggestions on intensive feeding programs? we have done Vital stim, and Lori Overland, I have researched Hopkins, (behavorial) St phs (behavorial), St 's (behavorial) where are the non behavorial intensive programs? i need a place that will focus on the swallowing component. erika receives therapy at school 5x/week at 2x/week at home, we follow the program, but are not making much of any progress. thanks Cathie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2006 Report Share Posted March 31, 2006 We need to talk! Too much to write about, no outside programs suggestions but can tell you what has been going on here with us. Call me - you still have my number? Debbie Matasker feeding programs OK, who can give me some suggestions on intensive feeding programs? we have done Vital stim, and Lori Overland, I have researched Hopkins, (behavorial) St phs (behavorial), St 's (behavorial) where are the non behavorial intensive programs? i need a place that will focus on the swallowing component. erika receives therapy at school 5x/week at 2x/week at home, we follow the program, but are not making much of any progress. thanks Cathie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2006 Report Share Posted April 1, 2006 Hi Cathie, We are looking at getting our son into a feeding program as well and are trying for Richmond Children's Hospital in Virginia. I have no experience with them, but their program sounds pretty good from what I've heard from people I've spoken with and reviewing the information on their website. Here's a link: http://www.childrenshosp- richmond.org/services/feeding/index.htm I hope this helps you out (and us, too!). Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2006 Report Share Posted April 4, 2006 Cathie - Ethan is still young (almost 4) and we've tried a lot of different things as well, but we are going to the Milwaukee Feeding Clinic in June. Just looking for a different perspective and/or suggestions. I don't think he'll be eating for nutrition anytime soon, but think it's worth exploring. I'll let you know how it goes and what they suggest for him. Jody NPTQueenie@... wrote: OK, who can give me some suggestions on intensive feeding programs? we have done Vital stim, and Lori Overland, I have researched Hopkins, (behavorial) St phs (behavorial), St 's (behavorial) where are the non behavorial intensive programs? i need a place that will focus on the swallowing component. erika receives therapy at school 5x/week at 2x/week at home, we follow the program, but are not making much of any progress. thanks Cathie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2006 Report Share Posted April 4, 2006 Cathie - Ethan is still young (almost 4) and we've tried a lot of different things as well, but we are going to the Milwaukee Feeding Clinic in June. Just looking for a different perspective and/or suggestions. I don't think he'll be eating for nutrition anytime soon, but think it's worth exploring. I'll let you know how it goes and what they suggest for him. Jody NPTQueenie@... wrote: OK, who can give me some suggestions on intensive feeding programs? we have done Vital stim, and Lori Overland, I have researched Hopkins, (behavorial) St phs (behavorial), St 's (behavorial) where are the non behavorial intensive programs? i need a place that will focus on the swallowing component. erika receives therapy at school 5x/week at 2x/week at home, we follow the program, but are not making much of any progress. thanks Cathie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2006 Report Share Posted April 8, 2006 Cathie, I'll forward this to my daughter a who is in her Masters for Speech and Language at Boston University. Every program you spoke of is all that I know. Maybe she can " find " something else. But maybe not. It's worth a shot. 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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