Guest guest Posted December 10, 1999 Report Share Posted December 10, 1999 Brayden is dealing with a whole deal of issues that is true. Dr. Putnam and ((Carlo)) xo.....lol, told me that children suffering from severe forms of EEGC (in other words....any of the above) most often will start out developing Neuropathic Motility disorder which in turn, turns to CIP because once the brain waves struggle for so long the actual intestinal muscle suffers ending with CIP. Unfortunate, but it is true. Hey you know Spencer has both forms of it......NIP and CIP, interesting. It developed at different times in different areas. Does Kody have Gastroparesis? Spencer has that too. Spencer has severe problems with his blood sugar too, you know a few months ago when I brought him to the hospital and he was at 16!!! SCARY! Metabolic and Hirchprungs is still running through everyone's heads as well!!! They don't want to test for Hirschprungs until they can get his underlying disorder under control. Figure that one out......we have been trying for 1 1/2 years. ((((((Carlo))))))) usually responds very quickly to emails.........but my Dr. bum, bum (as Spencer likes to call him) responds to me within minutes to just a few hours. If it happens to be like around 4 PM I write and he doesn't get back to me till 8 the next day he always apologizes. [eosinophilic gastroenteritis] Who Outgrows it????? > > > Since I have been on this list I seem to have seen three patterns of EG, EE, > development. There seem to be those who develop it as infants, then there > appear to be some in who it starts about age 10, and then there are those > who develop it as adults. There may be other patterns of development, but > those are the ones I have recognized from my reading here. > > I know that there are three different layers involved in the stomach and > intestine and these may present a little differently also. However it seems > that most here don't know which layer is involved. It may not be that > significant in the treatment of the disease. But I wonder if it could be > significant in who outgrows it and who doesn't? > > With so many variables, and so little knowledge about this disease, I think > it is a guessing game. Wish they would do some more research on us to try > and determine what causes it and why...... And some long term studies about > how it affects us over the long term and if children do outgrow maybe one > form over another. I think some of the problem here is the fact that it is > an Allergic disease with GI symptoms. We need a team who will research > together............... > > I know Joy is interested in compiling a list of Doctors who specialize in > EE, EG and posting it on her web site. I hope you will send her the > information so she can contact them for permission, or ask them to contact > her. I think that would be helpful to all of us. It would be nice to find > some West coast doctors and some who treat Adults as well. > > JUDY (ADULT GE) > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 1999 Report Share Posted December 10, 1999 Also I was wondering what are all the buttons, G tubes and other things that are used to feed many of these children made of ? Sorry I do not know the proper terminology. What do you do when latex kids are hospitalized? How can you be sure that everything from gloves to IV's are safe? Sferrazza wrote: > Judy > Just think about it. You go to the resturant and they handle food that > you swallow. I would think the symptoms could be on the inside since > there is no exposure externally. > > > > judy wrote: > >> That is a good probability, The thing that might not hold up there >> is that it is so rare and that other than you guys I have not heard >> of it running in families. But then with such varied symptoms I >> wonder if people live their whole lives with it and it only causes >> minor irritation for them and not severe pain like it has in us. I >> guess another possibility is that as in Cystic Fibrosis, both >> parents have to be carriers. There has been a history in my family >> for years of stomach problems, but mostly ulcers and Gerd. But what >> if some of those were misdiagnosed. I remember a few months back >> that we were hearing from a lot of Moms who were having symptoms, I >> wonder if any of them have followed up? I also wonder if I could >> have had this but just not had the major exacerbation's before. I >> am really wondering about the Latex thing. Can you be allergic to >> it internally and not have external symptoms??? Judy >> >> Re: [eosinophilic gastroenteritis] Who >> Outgrows it????? >> With us, we all had it from birth, >> problems could be traced way back to >> baby-dom, though some were much more >> severe than others. S. >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 1999 Report Share Posted December 10, 1999 , When Spencer is admitted they put huge signs on the door and on his bed to use Latex precautions. I still have to bug them about it though since he doesn't react on the outside. Ugh! Everything I get from home health for Spencer's IV stuff, tubing, TPN bags, syringes you name it is latex free. Even his CVL is latex free. Re: [eosinophilic gastroenteritis] Who Outgrows it????? With us, we all had it from birth, problems could be traced way back to baby-dom, though some were much more severe than others. S. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 1999 Report Share Posted December 10, 1999 Yes, it is sad about Brayden...he has a lot of other issues to deal with, I think he is multi-handicapped right? Kody's GI diagnoses is still unclear, with the possibilities being told to me of neuronal intestinal dysplasia form of Chronic Intestinal Pseudo-obstruction. OR now total intestinal Hirschprung's (though I really question that last one). Other than that, he just has the EE, the latex stuff and now, problems with reflux (even NPO!!!) with his Nissen being broken down. He also has a small paraesophageal hernia that we're battling from time to time. we have occasional problems with blood sugars, still undiagnosed... and the question of metabolic disorders remains " out there " . I have not fought hard to get definitive diagnoses unless they have definitive treatments for them. We are about to start another round of crap though, with tests and tubes and surgeries. yuk, yuk, yuk. I just sent an Email to {{{{{{{Carlo}}}}}}} to ask his help on some of this... is he good about response time? Steph. Re: [eosinophilic gastroenteritis] Who Outgrows it????? Steph, Now, now, now there.............you know that I know that you know that I know where YOU are coming from. (ohhhh that sounds even stranger) Dr. Putnam and Dr. Di Lorenzo have both said that they would transplant if needs be. Spencer's Colon would definitely be much better even if the allergen eos's are triggered. Which really sounds stupid, but I don't know how else to put it b/c Eos's are a form of allergens. I will have to re-ask Dr. Putnam about the two forms and their different names. But I have been assured that they would put him on the list. DON'T SCARE ME LIKE THIS!!!!! I don't want to loose my baby. What exactly is Kody diagnosed with.....Spencer has six diseases, they think that the other 5 were all brought on by the severity of his Eos's disease. BTW, isn't it so sad about Brayden. I feel helpless, but at least we both gave her some good info on Dr. Di Lorenzo. [eosinophilic gastroenteritis] Who Outgrows it????? > > > Since I have been on this list I seem to have seen three patterns of EG, EE, > development. There seem to be those who develop it as infants, then there > appear to be some in who it starts about age 10, and then there are those > who develop it as adults. There may be other patterns of development, but > those are the ones I have recognized from my reading here. > > I know that there are three different layers involved in the stomach and > intestine and these may present a little differently also. However it seems > that most here don't know which layer is involved. It may not be that > significant in the treatment of the disease. But I wonder if it could be > significant in who outgrows it and who doesn't? > > With so many variables, and so little knowledge about this disease, I think > it is a guessing game. Wish they would do some more research on us to try > and determine what causes it and why...... And some long term studies about > how it affects us over the long term and if children do outgrow maybe one > form over another. I think some of the problem here is the fact that it is > an Allergic disease with GI symptoms. We need a team who will research > together............... > > I know Joy is interested in compiling a list of Doctors who specialize in > EE, EG and posting it on her web site. I hope you will send her the > information so she can contact them for permission, or ask them to contact > her. I think that would be helpful to all of us. It would be nice to find > some West coast doctors and some who treat Adults as well. > > JUDY (ADULT GE) > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 1999 Report Share Posted December 10, 1999 Sharon, He is doing awful at this point......I'll forward the last message to you from her. She wants a second opinion from Dr. Di Lorenzo. And you are in for a treat when if you decide to go there Sharon!!!! Re: [eosinophilic gastroenteritis] Who Outgrows it????? > From: SDidinsky@... > > In a message dated 12/10/99 4:44:10 PM Eastern Standard Time, > stephy8ch@... writes: > > << Yes, it is sad about Brayden...he has a lot of other issues to deal with, > I think he is multi-handicapped right? >> > > BTW - are you talking about Jayna's son? If so how is he doing? Have not > heard from her in a while? > > Love, > Sharon > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 1999 Report Share Posted December 10, 1999 Hey Sharon, Maybe you could fill Phyllis in on the Mitochondrial disorders.....I know there are ton's but....the enlarge liver and spleen. Aren't they a big sign of this? Re: [eosinophilic gastroenteritis] Who Outgrows it????? > From: SDidinsky@... > > In a message dated 12/10/99 7:17:52 PM Eastern Standard Time, > andrea.allred@... writes: > > << w months ago when I brought him to the hospital and he was at 16!!! > SCARY! Metabolic and Hirchprungs is still running through everyone's heads > as well!!! They don't want to test for Hirschprungs until they can get his > underlying disorder under control. Figure that one out......we have been > trying for 1 1/2 years. >> > > Alo, I forgot - Clayton cannot poop without medication. The carnitor which he > takes for metabolic reasons helps his motility but he still needs to take > mineral oil 3 times a day or he does not poop. > > Sharon > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 11, 1999 Report Share Posted December 11, 1999 In a message dated 12/11/99 4:26:42 AM Pacific Standard Time, stephy8ch@... writes: << He is not doing well at all. He's had lots of issues, lots of hospitalizations, in a PICU for the last several days wtih seizures that never stop. It doesnt look good. >> That poor family, we will keep them in our prayers. Cathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 11, 1999 Report Share Posted December 11, 1999 In a message dated 12/11/99 12:00:49 AM Eastern Standard Time, andrea.allred@... writes: << Maybe you could fill Phyllis in on the Mitochondrial disorders.....I know there are ton's but....the enlarge liver and spleen. Aren't they a big sign of this? >> yes -here are lots of links on mitochondrial disorders: http://www.neuro.wustl.edu/neuromuscular/mitosyn.html#leigh " >Mitocho ndrial Disorders http://www.ultranet.com/~jkimball/BiologyPages/C/CellularRespiration.htm l " >Cellular Respiration http://www.imdn.org/ " >International Mitochondrial Disease Network (providing support and information http://www.netcentral.co.uk/last/ " >Mitochondrial Disease Information Network http://www.gen.emory.edu/mitomap.html " >MITOMAP: A human mitochondrial genome database http://www.familyvillage.wisc.edu/lib_mito.htm " >mito http://biochemgen.ucsd.edu/umdf/ " >The United Mitochondrial Disease Foundation http://biochemgen.ucsd.edu/mmdc/ " >MMDC@UCSD http://ddi.digital.net/~mcelhinn/ " >MCELHINNY http://www.sonnet.co.uk/muscular-dystrophy/mitomyop.html " >Mitochondr ial Myopathies MITOMYOP.HTML http://www.geocities.com/HotSprings/Falls/3484/mitomyop.html " >Mit ochondrial Myopathies http://neuro-www.mgh.harvard.edu/forum/MitochondrialDis.Menu.html " > Mitochondrial Disorders Menu http://www.mdausa.org/ " >Muscular Dystrophy Association (MDA) USA Home Page http://mdausa.org/publications/Quest/q64mito.html " >MDA / Quest 6-4 / Mitochondrial Myopathy -- An Energy Crisis in the Cells http://www.umdf.org/frame/RESEARCH_F.HTMhttp://www.umdf.org/frame/ RESEARCH_F.HTM http://www.rivendell-peds.com/ " >Rivendell Ped and Adol Med Love, Sharon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 11, 1999 Report Share Posted December 11, 1999 sharon, He is not doing well at all. He's had lots of issues, lots of hospitalizations, in a PICU for the last several days wtih seizures that never stop. It doesnt look good. Steph. Re: [eosinophilic gastroenteritis] Who Outgrows it????? In a message dated 12/10/99 4:44:10 PM Eastern Standard Time, stephy8ch@... writes: << Yes, it is sad about Brayden...he has a lot of other issues to deal with, I think he is multi-handicapped right? >> BTW - are you talking about Jayna's son? If so how is he doing? Have not heard from her in a while? Love, Sharon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 1999 Report Share Posted December 13, 1999 Cathy was alllergic to the foods you listed through what type of testing? Also curious to find out the dosage was for the flovent. Thanks and I am so glad you are having success. Happy Holidays! Dcjatben@... wrote: > From: Dcjatben@... > > was discovered at age 11, but he may have had it longer. > > Cathy > > mom to 12, AS, EE, allergic to soy, nuts, peanuts, tomato, rice, > carrot, string bean, kidney bean, orange, pear, onion, mustard seed, grape > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 1999 Report Share Posted December 13, 1999 In a message dated 12/13/99 2:40:00 AM Pacific Standard Time, jsferrazza@... writes: << Cathy was alllergic to the foods you listed through what type of testing? Also curious to find out the dosage was for the flovent. Thanks and I am so glad you are having success. Happy Holidays! >> the soy, nuts, peanuts by cAP RAST and skin prick, the other foods were by skin prick. He was taking 2 puffs of flovent 110 two times a day, but he puffed it into his mouth and swallowed insted of inhaling into his lungs. Cathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 19, 1999 Report Share Posted December 19, 1999 Dan had his Latex test on Friday. Just wanted to be clear on this. If Spencer touches latex does he react internally only? Thanks for the help Allred wrote: > , When Spencer is admitted they put huge signs on the door and > on his bed to use Latex precautions. I still have to bug them about > it though since he doesn't react on the outside. Ugh! Everything I > get from home health for Spencer's IV stuff, tubing, TPN bags, > syringes you name it is latex free. Even his CVL is latex > free. > > Re: > > > [eosinophilic gastroenteritis] Who > > > Outgrows it????? > > > With us, we all had it > > > from birth, problems could > > > be traced way back to > > > baby-dom, though some were > > > much more severe than > > > others. S. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 1999 Report Share Posted December 20, 1999 , Spencer will react internally most of the time although if he has prolonged exposure to Latex (such as a latex banded) then he will develop a welt. Some of the nurses and 1 year residents will look at me like I am crazy at the local hospital when I tell them he reacts internally to the latex, but then when the doc gets a hold of them they somehow seem to understand and huge precaution signs go up on his door, bed and chart! LOL Re: [eosinophilic gastroenteritis] Who Outgrows it????? With us, we all had it from birth, problems could be traced way back to baby-dom, though some were much more severe than others. S. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 1999 Report Share Posted December 20, 1999 Steph, You got to hand it to Dr. Putnam......he's the one. Re: [eosinophilic gastroenteritis] Who Outgrows it????? With us, we all had it from birth, problems could be traced way back to baby-dom, though some were much more severe than others. S. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 1999 Report Share Posted December 20, 1999 Good for the doc then... how in the heck did you figure out an INTERNAL reaction to Latex? It took us quite a while to figure mine out and only when it got to the point where every time I swallowed a maloney esophageal dilator (they are latex), my mouth, throat swelled and I had chest pain... someone finally put two and two together (and it wasnt me)... then it became crystal clear why I developed such inflammation at my central line sites (latex syringes and equipment, etc etc). Since then, and latex precatusions, all of these problems went away. I also figured out why tennis shoes always made my feet itch (rubber soles). How did you figure this out with Spencer? S. Re: [eosinophilic gastroenteritis] Who Outgrows it????? , Spencer will react internally most of the time although if he has prolonged exposure to Latex (such as a latex banded) then he will develop a welt. Some of the nurses and 1 year residents will look at me like I am crazy at the local hospital when I tell them he reacts internally to the latex, but then when the doc gets a hold of them they somehow seem to understand and huge precaution signs go up on his door, bed and chart! LOL Re: [eosinophilic gastroenteritis] Who Outgrows it????? With us, we all had it from birth, problems could be traced way back to baby-dom, though some were much more severe than others. S. Quote Link to comment Share on other sites More sharing options...
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