Guest guest Posted July 2, 1999 Report Share Posted July 2, 1999 , When I called my gastro. doc after Emma started the tongue thrusting which i could without a doubt connect to the reglan, She told me to stop it immediatly. When I did the tongue thrusting stopped. I do know that it is a neurolgically based side effect but I never thought to ask anymore about it. I did get the feeling though that it was a bad thing and the doc didn't want me to " wait it out " to see if that was in fact the cause {the reglan}. Fortunatly for us, she did well off all anti reflux meds (she is on zantac) so we never had to find a replacement. When she did the thrusting it was almost as if her tongue was really dry and thick, and she kept acting like she was really thirsty so I knew that it wasn't actually a tongue thrust. I guess it is hard to tell with Josh since he is so young. good luck and let me know how it turns out. Jen Katapodis wife to mike and mom to our CHaRgErs Emma(5) and Diane (almost 4) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 4, 1999 Report Share Posted July 4, 1999 Jen K., When Josh was in the hospital the GI doc put him on the reglan. They had been planning to do a ph probe test to see if he was refluxing but then they dropped it and so she just prescribed the reglan anyways (mabye because of the ng tube). To this day I wonder if he really needs the reglan. I would love to stop giving it to him. He never really threw up very often. I realize that he still may be refluxing, but I hate to be treating him for something if he doesn't really need. I want to see test results to know if it's necessary or not, but none of his docs think the test would tell much. They did one other test for reflux. It was on an x-ray and the Dr. pumped 50 cc's into his tummy and he didn't reflux. Why did they start Emma on the reglan? Did she, or any other CHARGEr, have the ph probe and was it useful? Should I push to have this test done? I think I will call them tomorrow to see what they say about the tongue thrusting. Thanks in advance. mom to (2 yrs) and ( 5 mo) Jandmkat@... wrote: > From: Jandmkat@... > > , > When I called my gastro. doc after Emma started the tongue thrusting which i > could without a doubt connect to the reglan, She told me to stop it > immediatly. When I did the tongue thrusting stopped. I do know that it is a > neurolgically based side effect but I never thought to ask anymore about it. > I did get the feeling though that it was a bad thing and the doc didn't want > me to " wait it out " to see if that was in fact the cause {the reglan}. > Fortunatly for us, she did well off all anti reflux meds (she is on zantac) > so we never had to find a replacement. When she did the thrusting it was > almost as if her tongue was really dry and thick, and she kept acting like > she was really thirsty so I knew that it wasn't actually a tongue thrust. I > guess it is hard to tell with Josh since he is so young. > good luck and let me know how it turns out. > Jen Katapodis > wife to mike and mom to our CHaRgErs Emma(5) and Diane (almost 4) > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 4, 1999 Report Share Posted July 4, 1999 - You said you'd love to stop the Reglan. Well, one thing I learned early on with Aubrie was that I didn't *have* to give her anything. We also were unsure about Aubrie's reflux and which meds were really helping. We had questions about the Propulsid she was taking. It seemed like it wasn't helping and might even have been making it worse. One night we accidentally missed a dose and she improved so we skipped more. Then we called the doc to tell her. She was fine with stopping the med and said she wasn't sure it was going to help either. So, I guess my point is, if it's not a life-threatening situation as with a heart medication or something, you can choose to give or not give a med. If you give a med and don't see any change in symptoms, it may not be working for your child. You have every right to question and decide which meds to use. Aubrie did not have a ph-probe but she did have an upper GI which showed reflux. She vomited alot and there were slight outward signs when she was refluxing partway up without a vomit. So we were certain she had the problem and wanted to manage the stomach acids in order to reduce the aggravation to her esophogus, etc. She had a bronchoscopy and esophageal biopsy done. Neither showed any ill-effects from the reflux. Shortly after that her reflux resolved. We've been fortunate. Have you tried different formulas to see how they impact Josh's reflux? Aubrie had incredible improvements with Nutramigen (non-allergic formula) even tho she has tested negative for cow's milk allergies. She still has problems with constipation from whole milk and has does far better with Pediasure. I've told you more than you wanted to know but you're post about Josh just got me thinking. Hope I haven't bothered you all with issues you've already discussed when I wasn't paying attention. Michele mom to Aubrie (19 mos) CHaRgE and ( 7 yrs), wife to DJ, in IL westml@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 4, 1999 Report Share Posted July 4, 1999 Michele-- I greatly appreciate yours and any other responses on the subject. I didn't think about the formula at all. He is on soy cause he does possibly have the cow's milk allergy. Did your insurance help cover the Nutramigen? Isn't that one of those expensive ones? I think the whole reflux issue is worth pursuing. It would be great to stop giving him the medicine. He wasn't really throwing up too much before and he still isn't throwing up too much so I guess I havn't seen a real change. I guess if I stopped the med and he got worse then mabye he really needs it. It's probably worth a try. He is also on Zantac. You said with Aubrie that you just gave her meds to manage the stomach acids. What did you give her? How old was she when the reflux resolved? thanks! mom to (2 yrs) and Josh (5 mo) CHaRGE Michele Westmaas wrote: > > > - > You said you'd love to stop the Reglan. Well, one thing I learned early > on with Aubrie was that I didn't *have* to give her anything. We also > were unsure about Aubrie's reflux and which meds were really helping. > We had questions about the Propulsid she was taking. It seemed like it > wasn't helping and might even have been making it worse. One night we > accidentally missed a dose and she improved so we skipped more. Then we > called the doc to tell her. She was fine with stopping the med and said > she wasn't sure it was going to help either. So, I guess my point is, > if it's not a life-threatening situation as with a heart medication or > something, you can choose to give or not give a med. If you give a med > and don't see any change in symptoms, it may not be working for your > child. You have every right to question and decide which meds to use. > > Aubrie did not have a ph-probe but she did have an upper GI which showed > reflux. She vomited alot and there were slight outward signs when she > was refluxing partway up without a vomit. So we were certain she had > the problem and wanted to manage the stomach acids in order to reduce > the aggravation to her esophogus, etc. She had a bronchoscopy and > esophageal biopsy done. Neither showed any ill-effects from the > reflux. Shortly after that her reflux resolved. We've been fortunate. > > Have you tried different formulas to see how they impact Josh's reflux? > Aubrie had incredible improvements with Nutramigen (non-allergic > formula) even tho she has tested negative for cow's milk allergies. She > still has problems with constipation from whole milk and has does far > better with Pediasure. > > I've told you more than you wanted to know but you're post about Josh > just got me thinking. Hope I haven't bothered you all with issues > you've already discussed when I wasn't paying attention. > > Michele > mom to Aubrie (19 mos) CHaRgE and ( 7 yrs), wife to DJ, in IL > westml@... > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 5, 1999 Report Share Posted July 5, 1999 , When Kennedy was Josh's age she was on " Alimentum " {made by the makers of Similac} this is milk free, soy free, REALLY easy to digest. She is now on " Vivonex " {made by Novartis Nutrition} this is a children's formula, which they give to kids with bowel problems, etc, that have absorption problems, it is broken down, and we've had good luck with it. Might be worth a question or two to your ped if you're interested in trying the formula change to see if that makes a difference. Only problem is, if you were put on either, you'd wanna be darn sure your insurance would cover it. The Vivonex is about $400.00 a week!!! Mom to Kennedy 17 mos old CHARGEr, 9, 8, and wife to Graeme New Brunswick, Canada Visit the " Weir homepage " at: http://www.geocities.com/SunsetStrip/Palms/5716 ICQ #1426476 > > >Michele-- >I greatly appreciate yours and any other responses on the subject. I didn't think about the formula at all. He is on >soy cause he does possibly have the cow's milk allergy. Did your insurance help cover the Nutramigen? Isn't that one >of those expensive ones? > I think the whole reflux issue is worth pursuing. It would be great to stop giving him the medicine. He wasn't >really throwing up too much before and he still isn't throwing up too much so I guess I havn't seen a real change. I >guess if I stopped the med and he got worse then mabye he really needs it. It's probably worth a try. He is also on >Zantac. You said with Aubrie that you just gave her meds to manage the stomach acids. What did you give her? How old >was she when the reflux resolved? >thanks! > > >mom to (2 yrs) and Josh (5 mo) CHaRGE > > >Michele Westmaas wrote: > >> >> >> - >> You said you'd love to stop the Reglan. Well, one thing I learned early >> on with Aubrie was that I didn't *have* to give her anything. We also >> were unsure about Aubrie's reflux and which meds were really helping. >> We had questions about the Propulsid she was taking. It seemed like it >> wasn't helping and might even have been making it worse. One night we >> accidentally missed a dose and she improved so we skipped more. Then we >> called the doc to tell her. She was fine with stopping the med and said >> she wasn't sure it was going to help either. So, I guess my point is, >> if it's not a life-threatening situation as with a heart medication or >> something, you can choose to give or not give a med. If you give a med >> and don't see any change in symptoms, it may not be working for your >> child. You have every right to question and decide which meds to use. >> >> Aubrie did not have a ph-probe but she did have an upper GI which showed >> reflux. She vomited alot and there were slight outward signs when she >> was refluxing partway up without a vomit. So we were certain she had >> the problem and wanted to manage the stomach acids in order to reduce >> the aggravation to her esophogus, etc. She had a bronchoscopy and >> esophageal biopsy done. Neither showed any ill-effects from the >> reflux. Shortly after that her reflux resolved. We've been fortunate. >> >> Have you tried different formulas to see how they impact Josh's reflux? >> Aubrie had incredible improvements with Nutramigen (non-allergic >> formula) even tho she has tested negative for cow's milk allergies. She >> still has problems with constipation from whole milk and has does far >> better with Pediasure. >> >> I've told you more than you wanted to know but you're post about Josh >> just got me thinking. Hope I haven't bothered you all with issues >> you've already discussed when I wasn't paying attention. >> >> Michele >> mom to Aubrie (19 mos) CHaRgE and ( 7 yrs), wife to DJ, in IL >> westml@... >> >> --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 5, 1999 Report Share Posted July 5, 1999 - Don't know if I can remember all the dates without going thru all my records. Aubrie was first on Propulsid and Zantac. We switched it to Prilosec with great results. I think we switched formulas at about the same time as the med switch. The GI doc said we could try the Nutramigen but there was no medical reason it would make a difference. Well, it made a huge difference. I never got insurance to cover it but I got it at a discount thru the company's (Mead ) Helping Hands for Special Kids program. They take income info and then determine your rate. We got ours for $10/can rather than $17-20/can at Walmart. They delivered it to the door so that was good too. The number for the program is . I think Aubrie's reflux improved before 1 yr of age. By then, she was totally oral by day and tube fed at night. We stopped the meds before that but I'm not sure when. Good luck with little Josh! Michele mom to Aubrie (19 mos) CHaRgE and (7 yrs), wife to DJ, in IL westml@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 1999 Report Share Posted July 8, 1999 In a message dated 7/2/99 9:04:28 PM Eastern Daylight Time, Jandmkat@... writes: << When she did the thrusting it was almost as if her tongue was really dry and thick, and she kept acting like she was really thirsty so I knew that it wasn't actually a tongue thrust. >> Jen, Could Emma have been having an allergic reaction to the Reglan? How long was she sticking her tongue out? I developed an allergy to eggs just last summer and when I eat them my tongue swells. The first sign of a problem is that my tongue doesn't fit in my mouth anymore. The first time it happened I didn't know what was going on so I let it go for hours and ended up in the ER. Now I know to avoid eggs at all costs. I am finding out that MANY things have eggs in them that I never knew about. Anyway, Jen, it's just a thought that if Emma was having an allergic reaction you might want to be careful of other meds in the same class as Reglan. See you in Houston! BTW, when and where are your flying from? We're flying out of Newark on 7/22. (Destiny 6 1/2 CHARgE, Zachary 4) NYC Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 1999 Report Share Posted July 13, 1999 Michele-- My reply is a little late, but thank you for all the information!! We have an appointment for Josh at the Follow Up Nutrition clinic this week. I'm not sure exactly what they do but I know that the GI doc will be there so this is one of the questions I am definantly going to ask him about! Thanks! Michele Westmaas wrote: > > > - > Don't know if I can remember all the dates without going thru all my > records. Aubrie was first on Propulsid and Zantac. We switched it to > Prilosec with great results. I think we switched formulas at about the > same time as the med switch. The GI doc said we could try the > Nutramigen but there was no medical reason it would make a difference. > Well, it made a huge difference. I never got insurance to cover it but > I got it at a discount thru the company's (Mead ) Helping Hands > for Special Kids program. They take income info and then determine your > rate. We got ours for $10/can rather than $17-20/can at Walmart. They > delivered it to the door so that was good too. The number for the > program is . > > I think Aubrie's reflux improved before 1 yr of age. By then, she was > totally oral by day and tube fed at night. We stopped the meds before > that but I'm not sure when. > > Good luck with little Josh! > > Michele > mom to Aubrie (19 mos) CHaRgE and (7 yrs), wife to DJ, in IL > westml@... > > --------------------------- Quote Link to comment Share on other sites More sharing options...
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