Guest guest Posted October 28, 1999 Report Share Posted October 28, 1999 We have a state case manager who runs the whole program. It is called Kid-Screen. I have her name and number, maybe she could help you at least know who to fight. Her name is Janet Hanson and her number is . BJ had only a ng tube but that automatically qualified him for 32 hours a week. With a g-tube, I know it is more. She said they provide automatic nursing services to any child who is dependent on a machine for life and that includes feedings. Dawn-KS, mommy to Dakota, 7, former 34 weeker and aka BJ, 4, former 32 weeker, (eosinophilic gastroenteritis, Nissen, asthma, reflux), and mommy to Mackenzie Marie (due December 24) Re: [eosinophilic gastroenteritis] Re: update on Alyssa Dawn, I want to know who YOUR friends are! I have never heard of getting nursing services for tube feeding!! We had to fight and fight HARD to get Kody's nursing after his CVL was initiated and I just wanted help with the IV meds every 4 hours and the central line while me and four others were getting and dealing with fresh G tubes. We are still fighting NOW over the issue and only get to keep what we have becuase of the bleeds and the fact that he is " unstable " per the doctor's note and requires constant supervision by an RN with advanced pediatric life support training. This has nothing to do with any of the rest of us being tube fed. I'm on my own; they wont even consider helping with that. I know that several others with kids on TPN are amazed that I've gotten nursing as I have. They'd be SHOCKED to hear that some are getting it for tube feeding! Personally, I think EVERYONE should get it if they want it... we wouldnt ask for that unless we really needed it anyway... who wants to bring nursing care in on themselves unless they really have to have it? I guess I just dont get the logic here.. ? I also dont get the whole SSI question. We were told point-blank that was all income based and we were disqualified no matter what. Obviously, with all of us with EE all our pumps and GT problems, and Kody with pseudo-obstruction on top of all of that... we have some serious #$()*@$ going on. I just dont get it. Like I said, I want YOUR friends.... Steph. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 1999 Report Share Posted October 28, 1999 Dawn, I want to know who YOUR friends are! I have never heard of getting nursing services for tube feeding!! We had to fight and fight HARD to get Kody's nursing after his CVL was initiated and I just wanted help with the IV meds every 4 hours and the central line while me and four others were getting and dealing with fresh G tubes. We are still fighting NOW over the issue and only get to keep what we have becuase of the bleeds and the fact that he is " unstable " per the doctor's note and requires constant supervision by an RN with advanced pediatric life support training. This has nothing to do with any of the rest of us being tube fed. I'm on my own; they wont even consider helping with that. I know that several others with kids on TPN are amazed that I've gotten nursing as I have. They'd be SHOCKED to hear that some are getting it for tube feeding! Personally, I think EVERYONE should get it if they want it... we wouldnt ask for that unless we really needed it anyway... who wants to bring nursing care in on themselves unless they really have to have it? I guess I just dont get the logic here.. ? I also dont get the whole SSI question. We were told point-blank that was all income based and we were disqualified no matter what. Obviously, with all of us with EE all our pumps and GT problems, and Kody with pseudo-obstruction on top of all of that... we have some serious #$()*@$ going on. I just dont get it. Like I said, I want YOUR friends.... Steph. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 1999 Report Share Posted October 28, 1999 I finally had to stop making promises to BJ that things were gonna be better after this and then after that. It is a hard thing to deal with. Dawn-KS, mommy to Dakota, 7, former 34 weeker and aka BJ, 4, former 32 weeker, (eosinophilic gastroenteritis, Nissen, asthma, reflux), and mommy to Mackenzie Marie (due December 24) Re: [eosinophilic gastroenteritis] Re: update on Alyssa > > > >From: Ssrams@... > > > >This is Tina again and we spent the afternoon in the dr. office again > Alyssa > >had a lot of lab work and urerine test done appartly there were some > >problems with some test they took last month, okay I simply lost it today, > I > >have been telling Alyssa that she was going to get better after she had the > >tube in, well she's not and she said to me as they held herdown Momma you > >said I was gonna be better you lied to me, you lied to me. she is only > three > >what am I supposed to tell her? I don't even know what to say to myself. I > >too thought things were going to be 100% better I feel let down and now I > >have let her down too. I feel like my world is falling a part and I don't > >know how to control this rage. It is simple not fair, she is supposed to > go > >back in the hospital Sunday and she had aready bought a costume for > halloween > >how am I going to tell her that is out too? she has been looking forward to > >this for months in fact before she had the tube put in we used this to > >brightn her up. now what? I know I shoud be happy that is alive and other > >wise a normal kid but this is getting to be to much and I don't have a > clue > >to handle this. any advice?Tina mom to Alyssa > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 1999 Report Share Posted October 29, 1999 In a message dated 10/29/99 1:38:52 AM Eastern Daylight Time, JSTKID@... writes: << Tina, the company's full name is Zevex Incorporated. Their address is 4314 South 670 West, Salt Lake City, UT 84123 Their toll free # 1-. Their fax # is . The full name of the pump is EnteraLite Ambulatory Enteral Feeding Pump. is also on medicaid. We are in Oklahoma. He has been tube fed since he was 5 months old. The state recently bought the pump for him. Yea! I will try to help in any way I can. Just let me know >> Tina: Also the Zevex rep will help you get coeverage. The rep in our area (I called the 800 number and they gave me the number for my local rep) allowed us to use the pump for 2 weeks (actually about 5 weeks) and supplied all the bags until we were able to get the pump covered. Actually my insurance company was not the problem - they agreed to pay for it - BUT the medical supply company that we had would not carry it - so we switched. I LOVE THE PUMP. It is great in the car and when we travel. Love, Sharon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 1999 Report Share Posted October 29, 1999 Well today is a new day and we are still in limbo. the doc doesn't have the answers to really help. we are awaiting the results for a test for methylmalonic acidemia. At this point I don't know what to think. this diease is a total protein allergy. Which sounds crazy, but I am beging to think maybe it is possible. So far again she can't tolerate the formula and this is peptimen jr. okay now what? she is on gatorade through her tube until they can find something for her to get. Any ideas? do you guys who are fed through the tube DO YOU STILL THROW UP and complain about stomache pain? isn't the point of putting the tube to get rid of the yucky stuff? I mean even today the dr said the are no easy answers to this she is not text book case for EG, maybe she does have this other thing, does it make sence to you guys, she started out able to eat some stuff and now she has reactions to everything I mean last night she had 3 marshmellow the little one she threw up right after until there wasn't any thing left in her stomache. isn't that strange? there is nothing in them so I thought, but something was take for granted she isn't to have any thing by mouth but I though 3 little things can't hurt well I was wrong. ANy ideas on another formula?Thanks Tina, Oh yes the dr did mentionTPN what is the deal with that? my mom who is nurse said that it is a huge danger, what about you guys who have it? any problems? Tina mom to Alyssa who seems to be allergic to every thing. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 1999 Report Share Posted October 29, 1999 In a message dated 10/29/99 7:15:48 PM Central Daylight Time, stephy8ch@... writes: << Has Alyssa had motility testing? Have the doctors talked to you about this? If not, ask about it. >>No I have never even heard of this. What is it. At this point we have tried almost all the formulas. and so far no luck, it is like she can tolerate them for a couple of days and then bang she starts to get sick, right now she has not lost weight, when she starts getting sick I give her a dose of phenigran and then gatorade so far that is all she has had going on three days, but she keeps it down, it doesn't make any sence. got any ideas? thanks Tina Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 1999 Report Share Posted October 29, 1999 Sharon, thanks but at this time every thing is on hold. I don't know if I am coming or going. CAn you please get DR kelly's number for me? My ped wants to talk to him. he said that if this is just EG and not MMA that we are going to have to find another GI to take over Alyssa's case that our dr doesn't know about this to help at this point. Is it possible to have EG and be allergic to protein? or to have a intolerance? it seems that no one here knows? I have tried to do as much research and I still haven't gotten any answers. One of the reasons they think that Alyssa has (MMA) or something in this catogery) is that it I have a first cousin that has this he is 8 but because it took so lnong to get a answer he is brain damaged to were he will never talk funtion on his own he get started to walk. 2wks ago but it is completly genetic. there are 22 people known world wide with this. So I am scared spitless, thanks, Tina Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 1999 Report Share Posted October 29, 1999 Tina, You dont want TPN. Only agree to that if it is a life-saving measure and everything, I MEAN EVERYTHING else has been tried.. Have you tried Elecare? Have you tried ALL the elemental formulas? Is she staying hydrated on her own? Your mom is right. TPN itself is life threatening. If the kids dont die from central line infections, they eventually do from liver failure or other major organ damage. A few kids have made it out 10 years or so but they seem to be the exception. We held out putting Kody on TPN until he had LOST almost 10 lbs, he was requiring bi-weekly hospitalizations for IV hydration and was getting GI bleeds from G-J tube that was refluxing. He would not have made it much longer without the line and TPN. We had hoped it would be temporary, but that turns out not to be the case. Once you get them on it, many kids can never get off. You have to be able to live with the decision to do it and the only way to live with it is with the knowledge that they would have died without it. Sorry to be such a downer but this is the facts about TPN. can also attest to this as Spencer is TPN dependent too (he also has pseudo-obstruction). Has Alyssa had motility testing? Have the doctors talked to you about this? If not, ask about it. Steph Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 1999 Report Share Posted October 29, 1999 Tina, TPN scares the pants off of me. has been on it 4 times. Two times just in the hospital & twice for 6-8 weeks after surgeries to resolve the malnutrion. There are complications w/ it such as blood infection & damage to the liver, but I don't know the deep details of it. If she is having problems w/ g-tube feeds & vomitting & stomach pain, how about a g-j tube. I know it may seem like a step backwards, but has always done great on j-tube feeds. He gets malnutrion everytime we try to go to g-tube feeds. His stomach just can't handle enough volume. I know his condition is different from Alyssa's, but it might be worth a try. Have they talked about reflux surgery? As far as formula's has been on Neocate infant formula, 3232A because of the low carbs, & now Pediatric Vivonex. The issue for him is low osmalitity which has to do w/ the way it passes through the GI system. His GI doc said that Neocate Infant Formula is just like water passing through the GI system as the intestines really don't have to do any digesting & Neocate Infant formula has low osmalitity & is hypo-allergenic. Just my two cents worth. I hope I've helped some.... Rhonda, mom to 2, & Haven 5 Re: [eosinophilic gastroenteritis] Re: update on Alyssa >From: Ssrams@... > >Well today is a new day and we are still in limbo. the doc doesn't have the >answers to really help. we are awaiting the results for a test for >methylmalonic acidemia. At this point I don't know what to think. this >diease is a total protein allergy. Which sounds crazy, but I am beging to >think maybe it is possible. So far again she can't tolerate the formula and >this is peptimen jr. okay now what? she is on gatorade through her tube until >they can find something for her to get. Any ideas? do you guys who are fed >through the tube DO YOU STILL THROW UP and complain about stomache pain? >isn't the point of putting the tube to get rid of the yucky stuff? I mean >even today the dr said the are no easy answers to this she is not text book >case for EG, maybe she does have this other thing, does it make sence to you >guys, she started out able to eat some stuff and now she has reactions to >everything I mean last night she had 3 marshmellow the little one she threw >up right after until there wasn't any thing left in her stomache. isn't that >strange? there is nothing in them so I thought, but something was take for >granted she isn't to have any thing by mouth but I though 3 little things >can't hurt well I was wrong. ANy ideas on another formula?Thanks Tina, Oh >yes the dr did mentionTPN what is the deal with that? my mom who is nurse >said that it is a huge danger, what about you guys who have it? any problems? > Tina mom to Alyssa who seems to be allergic to every thing. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 1999 Report Share Posted October 29, 1999 What about getting on x-ray to see if she might be obstructed lower down? Rhonda Re: [eosinophilic gastroenteritis] Re: update on Alyssa >From: Ssrams@... > >In a message dated 10/29/99 7:15:48 PM Central Daylight Time, >stephy8ch@... writes: > ><< Has Alyssa had motility testing? Have the doctors talked to you about >this? If not, ask about it. >>No I have never even heard of this. What is >it. At this point we have tried almost all the formulas. and so far no luck, >it is like she can tolerate them for a couple of days and then bang she >starts to get sick, right now she has not lost weight, when she starts >getting sick I give her a dose of phenigran and then gatorade so far that is >all she has had going on three days, but she keeps it down, it doesn't make >any sence. got any ideas? thanks Tina > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 1999 Report Share Posted October 30, 1999 In a message dated 10/29/99 11:30:48 PM Central Daylight Time, JSTKID@... writes: << What about getting on x-ray to see if she might be obstructed lower down? >> We did that on Wednesday every thing looked fine.Tina Quote Link to comment Share on other sites More sharing options...
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