Guest guest Posted October 11, 1999 Report Share Posted October 11, 1999 In a message dated 10/11/99 1:05:24 PM Pacific Daylight Time, selias@... writes: << MY pediatrician wants to hospitalize him and do scoping and a battery of tests. Do you think we should look for another GI or stay with the one we have and hope he will hopefully do something. Do I take care of him or just ignore th efact that everything he eats goes right through him (as very loose or watery) >> Considering what your ped. thinks, I would ask his opinion, but would also lean towards getting a new GI. Just my opinion though. Cathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 1999 Report Share Posted October 11, 1999 Shana: With respect to school I supply all the foods for Clayton to eat and drink. They can give him nothing but certain fruits and they have a list. Luckily the school that he goes to is good with what he has to eat and it also helps in our case that Clayton has a one on one aide to assist him. He is basically inly allowed to eat what I provide for him. Maybe this would work - you can provide the food and when it is snack time the teachers will give her what you have provided. Good luck. Love, Sharon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 1999 Report Share Posted October 11, 1999 Shana, IgA, IgM or IgG have nothing to do with EG. There are a few kids with immunoglobin deficiencies with the disease, but there are just as many or even more who do NOT have that with it. They need to be careful not to try to fit your son into the same peg as your daughter. ALL my kids have been biopsy proven to have EE, but they each have a little different history and clinical picture. Only one has an immunoglobulin deficiency. The rest do not, but they still have EE (and the one who is so seriously ill has normal immunoglobin function). If you really think your son has it to and the doc refuses to look or treat to rule in/out, you should get another opinion. S. [eosinophilic gastroenteritis] school I wanted to ask for those of you who have younger kids in school how do you get the teachers to be cooperative not to give the kids anything. Last week Miriam was given a toffy and of course she ate it and for days she was having stomache aches and diareah. I talked to the teacher and all she said was " I can't take the responsibility to remember each time not to give her " She said I should put a sign on her saying " Do not feed me " or something similar so they will remember when they see the sign. I don't like the idea of pointing her out as different I want her to try and feel as normal as possible. Am I wrong. What do other people do. My son has been eating now 10 weeks and still has the diareah. Miriam's GI keeps telling me that he doesn't have what Miriam has because he doesn't have a low IGA but when I compare his numbers to her numbers his are lower than hers so I don't understand what he is talking about. MY pediatrican is convinced he does have it and the only thing that is saving him right now with the weight is that he is still nursing.(he is 2 and 3 months) MY pediatrician wants to hospitalize him and do scoping and a battery of tests. Do you think we should look for another GI or stay with the one we have and hope he will hopefully do something. Do I take care of him or just ignore th efact that everything he eats goes right through him (as very loose or watery) Shana ( mom to Miriam EG, food allergies, Yisroel, 2, asthma food allergies and trying to figure him out, Tehilla 7 ADHD) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 1999 Report Share Posted October 12, 1999 I have told the teachers many times not to give her anything at all only what I send her and if they give out treats they are to give her the pop rice that I supplied for the school. Afew weeks ago I came into them showing the book that Phyllis sent us with pictures of Miriam and th e tube and explaing the disease a little but it didn't seem to help at all. She is only tolerating chicken and rice products and even these not great she still has been complaining alot of tummy aches and has been having mostly watery stools and she almost never eats dinner anymore she goes to sleep without anything. Could it be from the foods she is eating or from the stuff they gave her in school last week is still bothering her. Shana Re: [eosinophilic gastroenteritis] school >From: SDidinsky@... > >Shana: > >With respect to school I supply all the foods for Clayton to eat and drink. >They can give him nothing but certain fruits and they have a list. Luckily >the school that he goes to is good with what he has to eat and it also helps >in our case that Clayton has a one on one aide to assist him. He is >basically inly allowed to eat what I provide for him. Maybe this would work >- you can provide the food and when it is snack time the teachers will give >her what you have provided. > >Good luck. > >Love, >Sharon > >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 1999 Report Share Posted October 12, 1999 Shana, I would go to another GI just to get another opinion. My ped has always been right on track w/ & was always willing to listen to me where some of the specialists don't or won't take the time to completely listen. Just my 2 cents worth... Rhonda [eosinophilic gastroenteritis] school I wanted to ask for those of you who have younger kids in school how do you get the teachers to be cooperative not to give the kids anything. Last week Miriam was given a toffy and of course she ate it and for days she was having stomache aches and diareah. I talked to the teacher and all she said was " I can't take the responsibility to remember each time not to give her " She said I should put a sign on her saying " Do not feed me " or something similar so they will remember when they see the sign. I don't like the idea of pointing her out as different I want her to try and feel as normal as possible. Am I wrong. What do other people do. My son has been eating now 10 weeks and still has the diareah. Miriam's GI keeps telling me that he doesn't have what Miriam has because he doesn't have a low IGA but when I compare his numbers to her numbers his are lower than hers so I don't understand what he is talking about. MY pediatrican is convinced he does have it and the only thing that is saving him right now with the weight is that he is still nursing.(he is 2 and 3 months) MY pediatrician wants to hospitalize him and do scoping and a battery of tests. Do you think we should look for another GI or stay with the one we have and hope he will hopefully do something. Do I take care of him or just ignore th efact that everything he eats goes right through him (as very loose or watery) Shana ( mom to Miriam EG, food allergies, Yisroel, 2, asthma food allergies and trying to figure him out, Tehilla 7 ADHD) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 1999 Report Share Posted October 12, 1999 Shana, It depends on the laws where you are as to what you can do with your child. In the United States, we have a federal law that allows us to write what is called a " 504 plan " .... it specifically states what can and cannot be done with my kids. I I use it for all of my school-age kids to deal with their EE.. and with my 4/yo Kody, we use it for all kinds of situations. Steph. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 1999 Report Share Posted October 12, 1999 Shana, I have found a great company w/ fun medical i.d. pendants for the kids. I'm planning to order one. The company is called Miss 's Company The toll free # is 1-. Their e-mail address is awarebear@.... The have bears, cats, flowers, dogs, & heart designs that your daughter would feel comfortable wearing. I agree w/ Judy's idea. Hope this helps... Rhonda, mom to 2, & Haven 5 [eosinophilic gastroenteritis] school Dear Shana, It is really a shame that this teacher is so uncooperative. My children are grown and I was not faced with this problem but I have a couple of ideas. You might want to teach your daughter to say no to any offered food. I know she is young but this is a problem she will have to live with so it might be easier to start teaching her now. The other thing might be to get her a pretty I.D. bracelet and have it engraved with something like " Don't feed me I am allergic " . Tell her she must show this to anyone who offers her food. She could wear one of the medical Alert bracelets, but if you could find something pretty she might feel special instead of different. I wish you luck. With your son, I say follow your instincts. We Moms know our kids better than anyone else, at least when they are little and you should listen to what your heart tells you. Good Luck, JUDY (ADULT GE) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 1999 Report Share Posted October 13, 1999 A 504 plan changed my life. I am 19 with eg and I had one when I was in high school. my school was terrible at dealing with kids with stomach diseases. The 504 planned changed everything. I would HIGHLY recommend getting one. ashley ===== Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 1999 Report Share Posted October 13, 1999 Shana, I would do this about the teacher that doesn't GET IT!!!!! Put your information about not feeding your child in writing. Send a copy to the teacher-certified, school principal-certified, and school superintendent-certified. Therefore, they have to respond to you as to how they are going to handle the situation. Don't let them make your child sicker just because they have to think before they pass out any candy. What a small gesture of compliance this would be on their part. This behavior & left handed attitude of the teacher is simply laziness & inexcusable. Putting things in writing always brings a response as well as action ont he part of the person or persons who are not willing to be compliant with the medical request of a parent. You could also attach a doctor's note to the certified letter. Don't take this kind of abuse from anyone-even a teacher. It would be different if you had not spoken to the teacher-but the attitude of unwillingnes to comply with your request is simply unforgiveable!!!!!! About the GI doc-get a new one. Don't wait for them to act on this new lab information. There are plenty of " GOOD " docs that will be agressive & listen to you when you are asking questions and speaking to them about your child. They could care less about your day to day living experience since they don't have to tolerate the same circumstances. I say move on to another DOCTOR. I waited too long to seek another opinion & now it's too late for me to undo the damage that was done during the wait and see approach. Just my opinion. Take Care U, (Camp878904) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2002 Report Share Posted July 1, 2002 Maybe I'm being dense, but what is " glue ear " ??? I've never heard that before. ~ > > I took her to the ENT today as she's been having pain in her ears and her sinuses are always full. He said she had glue ear. Not bad compared to other cfers. 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.