Guest guest Posted September 6, 1999 Report Share Posted September 6, 1999 Dawn, medicaid will pay for it. Call your medicaid worker and they will get paperwork from your Dr. it may take a week or two. But your dr should be able to get the formula until medicaid kicks in. I was told that if we paid for any of the formula we would have problems getting medicaid to pick up the tab also WIC will help. Your dr has to give the prescription to them and they pay for so much and then medicaid pays for the rest or that is how it works here in Texas. Do you know how long you guys have to be on the formula? Alyssa is 3 and she refused to drink any of the formulas. such as peptimen jr elecare neocate and neocate plus. the pharmacy has to order it they don't carry it on the shelves. hope this helps. Tina Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 1999 Report Share Posted September 6, 1999 Dawn, medicaid will pay for it. Call your medicaid worker and they will get paperwork from your Dr. it may take a week or two. But your dr should be able to get the formula until medicaid kicks in. I was told that if we paid for any of the formula we would have problems getting medicaid to pick up the tab also WIC will help. Your dr has to give the prescription to them and they pay for so much and then medicaid pays for the rest or that is how it works here in Texas. Do you know how long you guys have to be on the formula? Alyssa is 3 and she refused to drink any of the formulas. such as peptimen jr elecare neocate and neocate plus. the pharmacy has to order it they don't carry it on the shelves. hope this helps. Tina Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 1999 Report Share Posted September 6, 1999 Steph, I would be more than happy to pay the shipping for the juice boxes. Please let me know. Tricare paid for it? I thought I had no hope for Tricare, I was pretty sure Medicaid would pay but it would take a while to get it approved. Dawn-KS, mommy to Dakota, 7 and aka BJ, 3 (eosinophilic gastroenteritis, Nissen, asthma, reflux), and mommy to Mackenzie Marie (due December 24) [eosinophilic gastroenteritis] Elemental Diet Ok, I have talked our GI doctor in trying the elemental diet off the Prednisone but he still wants to try the Gastrocrom. I have some questions. First, can I give him anything to eat? I know that he will be wanting to eat something. Even if it is as simple as popcorn or rice cakes, it would satisfy the desire to eat. We start the diet Wednesday (We couldn't find anyone who had Neocate). Second, we are going to try the juice boxes to see if he will drink enough. If not, then we will go back to tube feeding. Has anyone been able to get the juice boxes covered by insurance? We are buying the first case but at $113 a case, we can't continue to do this. Dawn-KS, mommy to Dakota, 7 and aka BJ, 3 (eosinophilic gastroenteritis, Nissen, asthma, reflux), and mommy to Mackenzie Marie (due December 24) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 1999 Report Share Posted September 6, 1999 Steph, I would be more than happy to pay the shipping for the juice boxes. Please let me know. Tricare paid for it? I thought I had no hope for Tricare, I was pretty sure Medicaid would pay but it would take a while to get it approved. Dawn-KS, mommy to Dakota, 7 and aka BJ, 3 (eosinophilic gastroenteritis, Nissen, asthma, reflux), and mommy to Mackenzie Marie (due December 24) [eosinophilic gastroenteritis] Elemental Diet Ok, I have talked our GI doctor in trying the elemental diet off the Prednisone but he still wants to try the Gastrocrom. I have some questions. First, can I give him anything to eat? I know that he will be wanting to eat something. Even if it is as simple as popcorn or rice cakes, it would satisfy the desire to eat. We start the diet Wednesday (We couldn't find anyone who had Neocate). Second, we are going to try the juice boxes to see if he will drink enough. If not, then we will go back to tube feeding. Has anyone been able to get the juice boxes covered by insurance? We are buying the first case but at $113 a case, we can't continue to do this. Dawn-KS, mommy to Dakota, 7 and aka BJ, 3 (eosinophilic gastroenteritis, Nissen, asthma, reflux), and mommy to Mackenzie Marie (due December 24) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 1999 Report Share Posted September 6, 1999 Dawn, Our insurance paid for the juice boxes 100% because it was his sole diet at the time. The ONLY thing we let our kids eat during their initial elemental trial period was sugar and water type things (popsicles with NO fruit juice and candies with NO fruit or any food proteins in them). Actually, it wasnt that difficult for the 7 and 11 year old, they were told as long as they got their total formula they could have any safe candy or popsicles at any time, day or night. (some gummy worms and gummy candies, some life savers, some bubble gums are safe).. You have to be very careful in the beginning to not give ANY food proteins. After 6 weeks or so, you could introduce one food (like corn or rice).. but only one at a time and I would give each food a good 7 days or more, before introducing another. Also, we have found with a couple of the kids that the amount they eat of any certain food is important. For example, my 2-/yo can tolerate SOME potato products, but if he eats too much, he will have symptoms. Same with my 7 y/o and rice or potato. I have a couple of cases of juice boxes I could send you -- Steph [eosinophilic gastroenteritis] Elemental Diet Ok, I have talked our GI doctor in trying the elemental diet off the Prednisone but he still wants to try the Gastrocrom. I have some questions. First, can I give him anything to eat? I know that he will be wanting to eat something. Even if it is as simple as popcorn or rice cakes, it would satisfy the desire to eat. We start the diet Wednesday (We couldn't find anyone who had Neocate). Second, we are going to try the juice boxes to see if he will drink enough. If not, then we will go back to tube feeding. Has anyone been able to get the juice boxes covered by insurance? We are buying the first case but at $113 a case, we can't continue to do this. Dawn-KS, mommy to Dakota, 7 and aka BJ, 3 (eosinophilic gastroenteritis, Nissen, asthma, reflux), and mommy to Mackenzie Marie (due December 24) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 1999 Report Share Posted September 6, 1999 Dawn, Our insurance paid for the juice boxes 100% because it was his sole diet at the time. The ONLY thing we let our kids eat during their initial elemental trial period was sugar and water type things (popsicles with NO fruit juice and candies with NO fruit or any food proteins in them). Actually, it wasnt that difficult for the 7 and 11 year old, they were told as long as they got their total formula they could have any safe candy or popsicles at any time, day or night. (some gummy worms and gummy candies, some life savers, some bubble gums are safe).. You have to be very careful in the beginning to not give ANY food proteins. After 6 weeks or so, you could introduce one food (like corn or rice).. but only one at a time and I would give each food a good 7 days or more, before introducing another. Also, we have found with a couple of the kids that the amount they eat of any certain food is important. For example, my 2-/yo can tolerate SOME potato products, but if he eats too much, he will have symptoms. Same with my 7 y/o and rice or potato. I have a couple of cases of juice boxes I could send you -- Steph [eosinophilic gastroenteritis] Elemental Diet Ok, I have talked our GI doctor in trying the elemental diet off the Prednisone but he still wants to try the Gastrocrom. I have some questions. First, can I give him anything to eat? I know that he will be wanting to eat something. Even if it is as simple as popcorn or rice cakes, it would satisfy the desire to eat. We start the diet Wednesday (We couldn't find anyone who had Neocate). Second, we are going to try the juice boxes to see if he will drink enough. If not, then we will go back to tube feeding. Has anyone been able to get the juice boxes covered by insurance? We are buying the first case but at $113 a case, we can't continue to do this. Dawn-KS, mommy to Dakota, 7 and aka BJ, 3 (eosinophilic gastroenteritis, Nissen, asthma, reflux), and mommy to Mackenzie Marie (due December 24) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 1999 Report Share Posted September 6, 1999 At what point is an elemental diet considered? is currently using flovent, and is having some success. He still has some reflux symptoms. We are keeping him off the foods he is alergic to of course, and he has continued his prilosec. Hi GI wants me to call him around Sept. 27th, which will be a month of flovent. he wants to redo the endo, and if still has symptoms he wants to go with tablet steroids. I don't like the idea of steroids. I think has developed depression as a side effect of the flovent. Cathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 1999 Report Share Posted September 6, 1999 At what point is an elemental diet considered? is currently using flovent, and is having some success. He still has some reflux symptoms. We are keeping him off the foods he is alergic to of course, and he has continued his prilosec. Hi GI wants me to call him around Sept. 27th, which will be a month of flovent. he wants to redo the endo, and if still has symptoms he wants to go with tablet steroids. I don't like the idea of steroids. I think has developed depression as a side effect of the flovent. Cathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 1999 Report Share Posted September 6, 1999 In a message dated 9/6/99 10:01:59 AM Pacific Daylight Time, onegreatmom@... writes: << I was pretty sure Medicaid would pay but it would take a while to get it approved. >> We have Mass. state health ins. which I think is the same as medicaid. I went to a local private pharmacy with my perscription, they gave me a months supply of ensure, and submitted the paper work for approval. a few weeks later a got a letter of approval, but had been getting the ensure all along covered infull. Maybe a small pharmacy in your town will give you the juice boxes while waiting for approval. Cathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 1999 Report Share Posted September 6, 1999 In a message dated 9/6/99 10:01:59 AM Pacific Daylight Time, onegreatmom@... writes: << I was pretty sure Medicaid would pay but it would take a while to get it approved. >> We have Mass. state health ins. which I think is the same as medicaid. I went to a local private pharmacy with my perscription, they gave me a months supply of ensure, and submitted the paper work for approval. a few weeks later a got a letter of approval, but had been getting the ensure all along covered infull. Maybe a small pharmacy in your town will give you the juice boxes while waiting for approval. Cathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 1999 Report Share Posted September 6, 1999 I had no trouble whatsover getting formula paid for. The doc just has to fill out a medical necessity form saying that it is his sole source of nutrition. They have to pay it. Steph Re: [eosinophilic gastroenteritis] Elemental Diet Steph, I would be more than happy to pay the shipping for the juice boxes. Please let me know. Tricare paid for it? I thought I had no hope for Tricare, I was pretty sure Medicaid would pay but it would take a while to get it approved. Dawn-KS, mommy to Dakota, 7 and aka BJ, 3 (eosinophilic gastroenteritis, Nissen, asthma, reflux), and mommy to Mackenzie Marie (due December 24) [eosinophilic gastroenteritis] Elemental Diet Ok, I have talked our GI doctor in trying the elemental diet off the Prednisone but he still wants to try the Gastrocrom. I have some questions. First, can I give him anything to eat? I know that he will be wanting to eat something. Even if it is as simple as popcorn or rice cakes, it would satisfy the desire to eat. We start the diet Wednesday (We couldn't find anyone who had Neocate). Second, we are going to try the juice boxes to see if he will drink enough. If not, then we will go back to tube feeding. Has anyone been able to get the juice boxes covered by insurance? We are buying the first case but at $113 a case, we can't continue to do this. Dawn-KS, mommy to Dakota, 7 and aka BJ, 3 (eosinophilic gastroenteritis, Nissen, asthma, reflux), and mommy to Mackenzie Marie (due December 24) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 1999 Report Share Posted September 6, 1999 I think our doctor explained that it is suggested when the only time they are better is on the steroids. None of the other meds worked for BJ and we can't keep him on Prednisone forever Dawn-KS, mommy to Dakota, 7 and aka BJ, 3 (eosinophilic gastroenteritis, Nissen, asthma, reflux), and mommy to Mackenzie Marie (due December 24) Re: [eosinophilic gastroenteritis] Elemental Diet > From: Dcjatben@... > > At what point is an elemental diet considered? is currently using > flovent, and is having some success. He still has some reflux symptoms. We > are keeping him off the foods he is alergic to of course, and he has > continued his prilosec. Hi GI wants me to call him around Sept. 27th, which > will be a month of flovent. he wants to redo the endo, and if still > has symptoms he wants to go with tablet steroids. I don't like the idea of > steroids. I think has developed depression as a side effect of the > flovent. > > Cathy > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 1999 Report Share Posted September 6, 1999 I think our doctor explained that it is suggested when the only time they are better is on the steroids. None of the other meds worked for BJ and we can't keep him on Prednisone forever Dawn-KS, mommy to Dakota, 7 and aka BJ, 3 (eosinophilic gastroenteritis, Nissen, asthma, reflux), and mommy to Mackenzie Marie (due December 24) Re: [eosinophilic gastroenteritis] Elemental Diet > From: Dcjatben@... > > At what point is an elemental diet considered? is currently using > flovent, and is having some success. He still has some reflux symptoms. We > are keeping him off the foods he is alergic to of course, and he has > continued his prilosec. Hi GI wants me to call him around Sept. 27th, which > will be a month of flovent. he wants to redo the endo, and if still > has symptoms he wants to go with tablet steroids. I don't like the idea of > steroids. I think has developed depression as a side effect of the > flovent. > > Cathy > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 1999 Report Share Posted September 6, 1999 Cathy- I'd be willing to bet that the Flovent will work for you! How much are you giving it and how are you giving it? I can think of no way that Flovent could cause depression. It is a topical steroid -- kind of like putting hydrocortisone on your skin -- it doesn't pass through your liver, so no systemic side effects. However, I can think of LOTS of ways that EE could cause depression. It bites and it bites big time. If the Flovent does not work, then that would be the time to start the elemental diet. I'm not sure why these docs want to use systemic steroids instead --- Dr. 's study on elemental diets working for EE is well known and well published. Good luck! Re: [eosinophilic gastroenteritis] Elemental Diet >From: Dcjatben@... > > At what point is an elemental diet considered? is currently using >flovent, and is having some success. He still has some reflux symptoms. We >are keeping him off the foods he is alergic to of course, and he has >continued his prilosec. Hi GI wants me to call him around Sept. 27th, which >will be a month of flovent. he wants to redo the endo, and if still >has symptoms he wants to go with tablet steroids. I don't like the idea of >steroids. I think has developed depression as a side effect of the >flovent. > > Cathy > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 1999 Report Share Posted September 6, 1999 Cathy- I'd be willing to bet that the Flovent will work for you! How much are you giving it and how are you giving it? I can think of no way that Flovent could cause depression. It is a topical steroid -- kind of like putting hydrocortisone on your skin -- it doesn't pass through your liver, so no systemic side effects. However, I can think of LOTS of ways that EE could cause depression. It bites and it bites big time. If the Flovent does not work, then that would be the time to start the elemental diet. I'm not sure why these docs want to use systemic steroids instead --- Dr. 's study on elemental diets working for EE is well known and well published. Good luck! Re: [eosinophilic gastroenteritis] Elemental Diet >From: Dcjatben@... > > At what point is an elemental diet considered? is currently using >flovent, and is having some success. He still has some reflux symptoms. We >are keeping him off the foods he is alergic to of course, and he has >continued his prilosec. Hi GI wants me to call him around Sept. 27th, which >will be a month of flovent. he wants to redo the endo, and if still >has symptoms he wants to go with tablet steroids. I don't like the idea of >steroids. I think has developed depression as a side effect of the >flovent. > > Cathy > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 1999 Report Share Posted September 7, 1999 In a message dated 9/6/99 7:10:40 PM Pacific Daylight Time, transcription@... writes: << I'd be willing to bet that the Flovent will work for you! How much are you giving it and how are you giving it? I can think of no way that Flovent could cause depression. >> , gets 2 puffs of 110mcg. that he puffs into his mouth then swallos, he does this twice a day. On the package insert it says it has been related to depression in the clinical setting, but that may be with the inhaled into the lungs approach where it would go to the blood stream. Do you know whay publications Dr. 's EE studies were in? I'ld like to get a copy, Cathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 1999 Report Share Posted September 7, 1999 If you can't find the study online. I have it and can fax it. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 1999 Report Share Posted September 7, 1999 In a message dated 9/7/99 1:10:07 PM Pacific Daylight Time, transcription@... writes: << The study was published in Gastroenterology 1995; 109;1503-1513 I have a copy if you have a fax #. I think Sharon may have an electronic copy. That is a very low dose of Flovent to be used in this setting. We were taking 3-4 times that amount. >> thanks Steph. you can fax it to me at my friends house, her fax # is . I wonder if it is such a low dose because is missing a kidney? Cathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 1999 Report Share Posted September 7, 1999 In a message dated 9/7/99 1:11:58 PM Pacific Daylight Time, onegreatmom@... writes: << the problem is that they can't find it anywhere. >> Can they call the manufacturer and have it sent to a pharmacy? Cathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 1999 Report Share Posted September 7, 1999 That's a good one......never heard of Neocate being on back order. LOL. Sorry, but I went to the oley conference in SLC and Nestle was there with the Peptemen Jr and all that stuff and I told them Spencer was on Vivonex and previous Neocate and they said " Way out of our league " . Can't imagine that it would be in Walmarts league. Please let us know what you really get. But why can't you just go through an authorized home healthcare company that can order from the company? Re: [eosinophilic gastroenteritis] Elemental Diet > > > > From: Timmyandtina@... > > > > Dawn, medicaid will pay for it. Call your medicaid worker and they will > get > > paperwork from your Dr. it may take a week or two. But your dr should be > > able to get the formula until medicaid kicks in. I was told that if we > paid > > for any of the formula we would have problems getting medicaid to pick up > the > > tab also WIC will help. Your dr has to give the prescription to them and > they > > pay for so much and then medicaid pays for the rest or that is how it > works > > here in Texas. Do you know how long you guys have to be on the formula? > > Alyssa is 3 and she refused to drink any of the formulas. such as peptimen > jr > > elecare neocate and neocate plus. the pharmacy has to order it they don't > > carry it on the shelves. hope this helps. Tina > > > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 1999 Report Share Posted September 7, 1999 Thanks Cathy, I am working on Medicaid and Tricare (our Army insurance). Meanwhile, I got WIC to pay for 4 cases, the problem is that they can't find it anywhere. Dawn-KS, mommy to Dakota, 7 and aka BJ, 3 (eosinophilic gastroenteritis, Nissen, asthma, reflux), and mommy to Mackenzie Marie (due December 24) Re: [eosinophilic gastroenteritis] Elemental Diet > From: Dcjatben@... > > In a message dated 9/6/99 10:01:59 AM Pacific Daylight Time, > onegreatmom@... writes: > > << I was pretty sure Medicaid would pay but it would take a while to get it > approved. >> > > We have Mass. state health ins. which I think is the same as medicaid. I > went to a local private pharmacy with my perscription, they gave me a months > supply of ensure, and submitted the paper work for approval. a few weeks > later a got a letter of approval, but had been getting the ensure all along > covered infull. Maybe a small pharmacy in your town will give you the juice > boxes while waiting for approval. > > Cathy > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 1999 Report Share Posted September 7, 1999 This is what the lady at Tricare told me this morning after I asked to speak to a supervisor after talking to 3 other people who swore Tricare would not pay. BJ's pediatrician just left and he just got a new one who is real unfamiliar with him despite the other doctor's briefings about BJ. But she is looking into writing this letter saying that it is his sole source of nutrition. Dawn-KS, mommy to Dakota, 7 and aka BJ, 3 (eosinophilic gastroenteritis, Nissen, asthma, reflux), and mommy to Mackenzie Marie (due December 24) [eosinophilic gastroenteritis] Elemental Diet Ok, I have talked our GI doctor in trying the elemental diet off the Prednisone but he still wants to try the Gastrocrom. I have some questions. First, can I give him anything to eat? I know that he will be wanting to eat something. Even if it is as simple as popcorn or rice cakes, it would satisfy the desire to eat. We start the diet Wednesday (We couldn't find anyone who had Neocate). Second, we are going to try the juice boxes to see if he will drink enough. If not, then we will go back to tube feeding. Has anyone been able to get the juice boxes covered by insurance? We are buying the first case but at $113 a case, we can't continue to do this. Dawn-KS, mommy to Dakota, 7 and aka BJ, 3 (eosinophilic gastroenteritis, Nissen, asthma, reflux), and mommy to Mackenzie Marie (due December 24) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 1999 Report Share Posted September 7, 1999 I am not sure how long BJ will be on the formula, I truly am not sure he is going to drink enough. The GI doctor said he has to drink 5 cans a day. WIC got 4 cases approved and now they are just working on finding a place to get it. We ordered one case to hold us from Walmart but it was backordered. Dawn-KS, mommy to Dakota, 7 and aka BJ, 3 (eosinophilic gastroenteritis, Nissen, asthma, reflux), and mommy to Mackenzie Marie (due December 24) Re: [eosinophilic gastroenteritis] Elemental Diet > From: Timmyandtina@... > > Dawn, medicaid will pay for it. Call your medicaid worker and they will get > paperwork from your Dr. it may take a week or two. But your dr should be > able to get the formula until medicaid kicks in. I was told that if we paid > for any of the formula we would have problems getting medicaid to pick up the > tab also WIC will help. Your dr has to give the prescription to them and they > pay for so much and then medicaid pays for the rest or that is how it works > here in Texas. Do you know how long you guys have to be on the formula? > Alyssa is 3 and she refused to drink any of the formulas. such as peptimen jr > elecare neocate and neocate plus. the pharmacy has to order it they don't > carry it on the shelves. hope this helps. Tina > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 1999 Report Share Posted September 7, 1999 In a message dated 9/7/99 4:11:58 PM Eastern Daylight Time, onegreatmom@... writes: << the problem is that they can't find it anywhere. >> Tell them to call SHS directly - the company that makes Neocate. Here is the link. http://www.shsweb.co.uk/neocate/refer.html " >Neocate Research References http://www.shsweb.co.uk/neocate/ " >Neocate Home Page Love, Sharon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 1999 Report Share Posted September 7, 1999 In a message dated 9/7/99 6:01:43 PM Eastern Daylight Time, andrea.allred@... writes: << I don't think that the state can be that smart......lol. >> NO WAY - The states have too much else to worry about than sick kids!!!!!!!!!!!! Love, Sharon BTW - I still have the letter that I used to get the insurance company to pay for Clayton's formula. Quote Link to comment Share on other sites More sharing options...
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