Guest guest Posted November 4, 2005 Report Share Posted November 4, 2005 > Our has lost four pounds over the last two > months. The GI suggested giving her duocal and/or > scandishake but I told him that we simply can't afford > it. , Yes, the formulas are quite expensive if you use much. When I first started with tube feeding we were told that very few insurance companies will pick up the cost of formulas, either oral or tube, because they are considered food. However, in reality, we pay out-of-pocket only a small percentage of the actual cost of the formulas. With the first insurance company, they negotiated a deeply discounted price with Apria for us so we were paying only $20 a case. Retail was well over $100 a case. With our current insurance company, a similar negotiating process through my case manager resulted once again in a deeply discounted price on formula from Apria. The only snag is that once in a while Apria will try to sneak in a higher price in a bill. Our insurance companies also keep an eye on them re cost as all claims go through the insurance mill. One other thought on cost of formula. Because I don't eat nearly as much food orally as most folks, our grocery bill is lower than it would be. So the cost of the formula really isn't much more than if I were eating regular food. None of this may apply to your situation, but I just wanted to share how we have gotten help with the cost of formula. Take care, Barbara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2005 Report Share Posted November 4, 2005 Sorry you guys are going through this. I buy Pediasure on ebay, and the cost is MUCH less, especially if you buy it by the case. I don't know if those products are available, but my sons drink at least one Pediasure a day, and the cost savings is HUGE. Here's a link for Duocal up for auction: http://search.ebay.com/search/search.dll? sofocus=bs&sbrftog=1&fstype=1&from=R10&satitle=duocal&sacat=-1% 26catref%3DC6&bs=Search&sargn=-1%26saslc% 3D2&sadis=200&fpos=08809&ftrt=1&ftrv=1&saprclo=&saprchi=&fsop=1&fsoo=1 If you aren't familiar with ebay, email me privately and ask me questions if you need help. Take care, RH > > Our son, has had increased difficulty eating. > He had slowed down in his eating over the last several > months. In the last week, he's been unable to eat much > at all. He's lost 10-20 pounds in the last week. His > weight can vary by as much as five pounds from day to > day. I think that dehydration has much to do with his > weight issues. But, he's actually looking thinner > now. He had gained about 80 pounds in the last year, > even gaining a small amount as he had difficulty > eating. > > He's vomited most meals recently. He's been unable to > keep down anything more than clear liquids. > > Today they did a wbc scan and found something in the > small intestine. Not sure what because they didn't > say. Tomorrow they are doing a small bowel follow > through. > > Our has lost four pounds over the last two > months. The GI suggested giving her duocal and/or > scandishake but I told him that we simply can't afford > it. I have been thinking that the g-tube needs to be > replaced. He thinks there is a fistula in the old > stoma. > > I am SO frustrated. > > > > Mom to the two best kids in the world! > http://www.caringbridge.org/visit/thomasandkatie > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2005 Report Share Posted November 4, 2005 , Has ever had any autonomic testing done as my son is 20 and very thin has always been he has severe POTS AND Dysautonomia. I know of a few people that have eating problems and or chronic vomiting . My son receives monthly hydration we are not sure why he needs it but he is like a new person after he also has severe cyclic vomiting and Dysautonomia and POTS all secondary to mito. there is some very good information out there is you want to google it I think POTS place is one also www.ndrf.org www.dynakids.org best of luck Donna K ---- Van Verst tbnkatie@...> wrote: > Our son, has had increased difficulty eating. > He had slowed down in his eating over the last several > months. In the last week, he's been unable to eat much > at all. He's lost 10-20 pounds in the last week. His > weight can vary by as much as five pounds from day to > day. I think that dehydration has much to do with his > weight issues. But, he's actually looking thinner > now. He had gained about 80 pounds in the last year, > even gaining a small amount as he had difficulty > eating. > > He's vomited most meals recently. He's been unable to > keep down anything more than clear liquids. > > Today they did a wbc scan and found something in the > small intestine. Not sure what because they didn't > say. Tomorrow they are doing a small bowel follow > through. > > Our has lost four pounds over the last two > months. The GI suggested giving her duocal and/or > scandishake but I told him that we simply can't afford > it. I have been thinking that the g-tube needs to be > replaced. He thinks there is a fistula in the old > stoma. > > I am SO frustrated. > > > > Mom to the two best kids in the world! > http://www.caringbridge.org/visit/thomasandkatie > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2005 Report Share Posted November 4, 2005 has dysautonomia. He's also got periphral neuropathy. How do you know if it's cyclic vomiting vs an irritable bowel disease? No H. pylori. I really doubt that he has typical Crohn's disease. --- amerikooch@... wrote: > , > Has ever had any autonomic testing done as > my son is 20 and very thin has always been he has > severe POTS AND Dysautonomia. I know of a few people > that have eating problems and or chronic vomiting > . My son receives monthly hydration we are not sure > why he needs it but he is like a new person after he > also has severe cyclic vomiting and Dysautonomia and > POTS all secondary to mito. there is some very good > information out there is you want to google it I > think POTS place is one also > www.ndrf.org > www.dynakids.org best of luck Donna K > ---- Van Verst tbnkatie@...> wrote: > > Our son, has had increased difficulty > eating. > > He had slowed down in his eating over the last > several > > months. In the last week, he's been unable to eat > much > > at all. He's lost 10-20 pounds in the last week. > His > > weight can vary by as much as five pounds from day > to > > day. I think that dehydration has much to do with > his > > weight issues. But, he's actually looking > thinner > > now. He had gained about 80 pounds in the last > year, > > even gaining a small amount as he had difficulty > > eating. > > > > He's vomited most meals recently. He's been unable > to > > keep down anything more than clear liquids. > > > > Today they did a wbc scan and found something in > the > > small intestine. Not sure what because they didn't > > say. Tomorrow they are doing a small bowel follow > > through. > > > > Our has lost four pounds over the last two > > months. The GI suggested giving her duocal and/or > > scandishake but I told him that we simply can't > afford > > it. I have been thinking that the g-tube needs to > be > > replaced. He thinks there is a fistula in the > old > > stoma. > > > > I am SO frustrated. > > > > > > > > Mom to the two best kids in the world! > > http://www.caringbridge.org/visit/thomasandkatie > > > > __________________________________________________ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2005 Report Share Posted November 4, 2005 So sorry , and you are having such problems. I will be thinking good thoughts that things will get better soon and be stable for awhile. Take care, Shelby > Our son, has had increased difficulty eating. > He had slowed down in his eating over the last several > months. In the last week, he's been unable to eat much > at all. He's lost 10-20 pounds in the last week. His > weight can vary by as much as five pounds from day to > day. I think that dehydration has much to do with his > weight issues. But, he's actually looking thinner > now. He had gained about 80 pounds in the last year, > even gaining a small amount as he had difficulty > eating. > > He's vomited most meals recently. He's been unable to > keep down anything more than clear liquids. > > Today they did a wbc scan and found something in the > small intestine. Not sure what because they didn't > say. Tomorrow they are doing a small bowel follow > through. > > Our has lost four pounds over the last two > months. The GI suggested giving her duocal and/or > scandishake but I told him that we simply can't afford > it. I have been thinking that the g-tube needs to be > replaced. He thinks there is a fistula in the old > stoma. > > I am SO frustrated. > > > > Mom to the two best kids in the world! > http://www.caringbridge.org/visit/thomasandkatie > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 6, 2005 Report Share Posted November 6, 2005 ---When my daughter was diagnosed with Crohns I was very skeptical as time went on. She has a lot of autonomic symptoms...recently POTS. When she was first diagnosed she had a lot of diarrehea and they found inflammation which was indicative of Crohns. After treatment with asocol it went away, but she still had issues. Her symptoms were more like mine...I have gastric motility. After two years I took her to childrens to a crohns specialist for a second opinion. He took away the Crohns diagnosis and gave her the dx of a functional bowel disorder. He told me to keep the Crohns dx in the back of my mind, it still is possible she has Crohns also and she is in remission. I wonder if the issues with the dimotility caused her to have the inflammation. Only time will tell. My guess is ' problems are due to the dysautonomia. I hope he does not have an inflammatory bowel disease. He does not need anything else to deal with. Dysmotility problems can be serious enough. You guys are in my thoughts and prayers. Dawn Anich In , Van Verst wrote: > > has dysautonomia. He's also got periphral > neuropathy. How do you know if it's cyclic vomiting vs > an irritable bowel disease? No H. pylori. I really > doubt that he has typical Crohn's disease. > > > > --- amerikooch@a... wrote: > > > , > > Has ever had any autonomic testing done as > > my son is 20 and very thin has always been he has > > severe POTS AND Dysautonomia. I know of a few people > > that have eating problems and or chronic vomiting > > . My son receives monthly hydration we are not sure > > why he needs it but he is like a new person after he > > also has severe cyclic vomiting and Dysautonomia and > > POTS all secondary to mito. there is some very good > > information out there is you want to google it I > > think POTS place is one also > > www.ndrf.org > > www.dynakids.org best of luck Donna K > > ---- Van Verst wrote: > > > Our son, has had increased difficulty > > eating. > > > He had slowed down in his eating over the last > > several > > > months. In the last week, he's been unable to eat > > much > > > at all. He's lost 10-20 pounds in the last week. > > His > > > weight can vary by as much as five pounds from day > > to > > > day. I think that dehydration has much to do with > > his > > > weight issues. But, he's actually looking > > thinner > > > now. He had gained about 80 pounds in the last > > year, > > > even gaining a small amount as he had difficulty > > > eating. > > > > > > He's vomited most meals recently. He's been unable > > to > > > keep down anything more than clear liquids. > > > > > > Today they did a wbc scan and found something in > > the > > > small intestine. Not sure what because they didn't > > > say. Tomorrow they are doing a small bowel follow > > > through. > > > > > > Our has lost four pounds over the last two > > > months. The GI suggested giving her duocal and/or > > > scandishake but I told him that we simply can't > > afford > > > it. I have been thinking that the g-tube needs to > > be > > > replaced. He thinks there is a fistula in the > > old > > > stoma. > > > > > > I am SO frustrated. > > > > > > > > > > > > Mom to the two best kids in the world! > > > http://www.caringbridge.org/visit/thomasandkatie > > > > > > __________________________________________________ > > > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.