Guest guest Posted January 14, 2000 Report Share Posted January 14, 2000 Hi , What a beautiful photo. I hope you get it! I noticed also when I typed in Down Syndrome, there was a book called " Be Good To Eddie Lee " . I bought it a year and a half ago (not from Ebay, just from a kids' bookstore) and it is by far Sara's (DS age 5) favorite book of all the books we have. Every night, she wants me to read " Be Good to Eddie Lee. I find this interesting, since Eddie Lee is a Down Syndrome boy. It is about two friends and how one's mother has told her that she has to be good to Eddie Lee. It's a sweet book just f.y.i. Marcia Mom to Sara (DS) and Gabe Age 5 and Lucas 9 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2000 Report Share Posted January 14, 2000 I checked this book out of the library before. My 3 year old recognized the boy had Down syndrome Thanks for your support...I know I wasn't wrong to be mad. Re: reflux From: Rrietmann@... Hi , What a beautiful photo. I hope you get it! I noticed also when I typed in Down Syndrome, there was a book called " Be Good To Eddie Lee " . I bought it a year and a half ago (not from Ebay, just from a kids' bookstore) and it is by far Sara's (DS age 5) favorite book of all the books we have. Every night, she wants me to read " Be Good to Eddie Lee. I find this interesting, since Eddie Lee is a Down Syndrome boy. It is about two friends and how one's mother has told her that she has to be good to Eddie Lee. It's a sweet book just f.y.i. Marcia Mom to Sara (DS) and Gabe Age 5 and Lucas 9 --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2000 Report Share Posted January 18, 2000 stacy..i tried to look it up and nothing came under DS. Did you get the pic after all? so this person is on this list? and they bid it after you told us about it? common courtsy is a learned action --- Rrietmann@... wrote: > Hi , > > What a beautiful photo. I hope you get it! I > noticed also when I typed in > Down Syndrome, there was a book called " Be Good To > Eddie Lee " . I bought it a > year and a half ago (not from Ebay, just from a > kids' bookstore) and it is by > far Sara's (DS age 5) favorite book of all the books > we have. Every night, > she wants me to read " Be Good to Eddie Lee. I find > this interesting, since > Eddie Lee is a Down Syndrome boy. It is about two > friends and how one's > mother has told her that she has to be good to Eddie > Lee. It's a sweet book > just f.y.i. > > Marcia > Mom to Sara (DS) and Gabe Age 5 and Lucas 9 > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2000 Report Share Posted November 7, 2000 Lori, What is Tommy taking for reflux? Brook was completely out of control when he had CERD, crying and screaming all day long, whacking himself in the head constantly. It's a very very painful disease and leads to some serious behavior problems. The meds for reflux helped some, but it wasn't until he had surgery that his behavior really improved dramatically. I hope you get some answers soon. Marisa Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 2001 Report Share Posted December 5, 2001 , given that he has been on indomethacin for so long my guess would be an ulcer from that medicine. It is very hard on the stomach and intestinal lining. I get bloody diarrhea from it and also ulcers. I know it is fairly common to have that happen w/ that type of drug. I hope the GP had some answers as well. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 2002 Report Share Posted November 15, 2002 If she has reflux it can cause extra drooling/mucas. The acid irritates the stomach and throat so the body produces more mucus to coat/sooth the irritation. A symptom is heartburn but you don't always feel heartburn with refux. A test for refux is easy and painless. Just swallow some dye and get a xray. Most common treatment is medication. This helped some of my extra mucus and nausea. lt can be common with SMA but its common in " healthy " people (mostly middle age an older) look at all the heartburn and antacids for sale. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 2002 Report Share Posted November 15, 2002 , You're welcome. It was just a thought because reflux can be a part of SMA. Also, like I said, I thought Acidophilus was a digestive aid and since reflux fits that as well I thought perhaps that's what the root could be. Anyway, am I right in understanding Acidophilus to be a digestive aid, or does it do other things that you're thinking it's helping to manage that is reducing her secretions? If so, I may want to try it with Jordan. Jay reflux Jay, This is the first time I have heard anything about reflux being affiliated with SMA so I have no knowledge nor has Crystal been tested in anyway for this. However, at 3 months of age Crystal's family doctor always blamed her drainage on allergies and suggested a treatment plan accordingly but trips to her neurologist always went along a different path of discussion. He said that excessive secretions alone are very common with SMA and there is not much that can be done. He offered medicines that had side effects that I chose not to give to Crystal especially being so young and her secretions at that point were only a nuisance and didn't threaten her. But as she got older they got worse and took longer to go away. It got to the point that 90% of the time she would have these secretions and then have such a short break from them. They were still only a nuisance and caused no real threat. Through my experiments at home and research in talking to other SMA families I found the plan I follow with her today and have found it to be very effective on an ongoing basis. Now she is affected rarely and it is always because she is exposed to too much cold weather or being in the cold for too long. I can up the dose of Acidophilus for one day and the next day they are gone. The only problem she is having now is the drooling at night and I haven't been able to figure that one out yet. As far as reflux?? If she was still having a problem, I definitely would take your thoughts and check into it, but for now, I am content with her treatment plan. Thank you so much for sharing the thought though and I will keep it in my mind for future references in case she may develop a problem with this. If anyone at anytime would like to be removed from the mass mailings I send out and/or Crystal's updates on her website, please, just let me know. God Bless All. Meet Crystal for yourself at: <A HREF= " http://www.our-sma-angels.com/crystal " >Crystal's Website</A> or visit <A HREF= " http://www.our-sma-angels.com " >Our SMA Angels</A> site and meet the rest of the children! Feel free to email me with any inquiries concerning Juice+ and/or NSA Filtration systems I use with Crystal for extra health benefits. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2002 Report Share Posted November 16, 2002 I've had GERD/reflux most of my life, even as a teenager I had to carry a pocketful of rolaids or DiGel. I think scoliosis adds significantly to the problem too, think my ribcage squeezes stomach contents back up (IMHO). Its also affected how much I can eat and drink too lately, I get full real quick, and feel like I'm having a heart attack if I over eat in the least. Forget dinner and drinks, now its one or the other. Prilosec was a wonder drug for me though, I can eat and drink anything I want now, no more heartburn. The acid is still there though its just neutralized. Along with Upper GI mentioned, I had a Gastroscopy, where they put you too sleep and run a camera down the throat and into the stomach. .I don't think its anything like general anesthesia, i just had one IV and went night night for a bit. The hard part was getting the camera past my teeth (that darn jaw thing again!) and getting on the table! For people who have had reflux for a long time, there's a condition called Barrett's, thats what the docs were looking for, it can be a precursor to cancer of the esophogus, thankfully mine was fine. Doug Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 17, 2002 Report Share Posted December 17, 2002 >Is breastfed? Does he use formula? What brand does he use? Jonathon was breatfed until he was 6 mths old. They needed to put me back on my seizure meds and I wasn't comfortable taking them and breastfeeding so we switched to Isomil. It wasn't a mth after that until he quite taking teh isomil. we switched to Smiliac and when he was about 9 mths he quit taking that. I put him on whole milk. That reaked havoc on his stomach after every bottle he would scream bloody murder. Our dr. told us to try skim milk we tried that for a little while and had to switch doctors. The new Ped told us to try Soy Milk. that seems to work miracles. He is acting better and looks better too. If only he will keep taking it now. Second, food sensitivities can cause tremendous problems with reflux disease. He is on a limited diet. The only juice I have found that doesn't mess his stomach up is White Grape Juice. And I just keep a close eye on what he is eating. We tried to have an upper gi but he wouln't take the medicine for it. Duncan refluxes so far up that he gets a stuffy nose and a congested chest. He no longer has wheezing episodes, so that's some relief to us. Jonathon has wheezing spells also usually at night or while he sleeps. I didn't connect it with the reflux. but he reluxes so bad at time you can see him trying to swollow it back down. So that could be part of teh problem Viriginia _________________________________________________________________ Add photos to your messages with MSN 8. Get 2 months FREE*. http://join.msn.com/?page=features/featuredemail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 17, 2002 Report Share Posted December 17, 2002 >Is breastfed? Does he use formula? What brand does he use? Jonathon was breatfed until he was 6 mths old. They needed to put me back on my seizure meds and I wasn't comfortable taking them and breastfeeding so we switched to Isomil. It wasn't a mth after that until he quite taking teh isomil. we switched to Smiliac and when he was about 9 mths he quit taking that. I put him on whole milk. That reaked havoc on his stomach after every bottle he would scream bloody murder. Our dr. told us to try skim milk we tried that for a little while and had to switch doctors. The new Ped told us to try Soy Milk. that seems to work miracles. He is acting better and looks better too. If only he will keep taking it now. Second, food sensitivities can cause tremendous problems with reflux disease. He is on a limited diet. The only juice I have found that doesn't mess his stomach up is White Grape Juice. And I just keep a close eye on what he is eating. We tried to have an upper gi but he wouln't take the medicine for it. Duncan refluxes so far up that he gets a stuffy nose and a congested chest. He no longer has wheezing episodes, so that's some relief to us. Jonathon has wheezing spells also usually at night or while he sleeps. I didn't connect it with the reflux. but he reluxes so bad at time you can see him trying to swollow it back down. So that could be part of teh problem Viriginia _________________________________________________________________ Add photos to your messages with MSN 8. Get 2 months FREE*. http://join.msn.com/?page=features/featuredemail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2003 Report Share Posted April 29, 2003 : loves her soy milk so much -- she only had cow's milk a few times and reacted strongly enough we knew right away (and then again with a challenge every six months until I gave up with guilt over her pain!), so she never got used to it. I was looking at the goat's milk and it had something in it that was suspect... I'm sorry I can't remember but maybe it was casein and there was a note on the carton that said goat's casein (or whatever the element was) is less reactive than cow's, but that some people react?? Don't quote me!! Maybe check out a carton and see what it says. I just know I put it right back, disappointed and not willing to shell out the bucks to try it. What is a rotation diet? Sounds intriguing. But she is such a picky eater I don't know how many times I can rotate pbj vs. chicken noodle soup! Hee hee hee. (mom to Kate, born 9/19/02, dairy intolerant; and , age 4, dairy intolerant -- currently has polysaccharide antibody def, previously had transient IgG, IgA, t-cell & other defs) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2003 Report Share Posted April 29, 2003 In a message dated 4/29/03 7:38:24 AM Pacific Daylight Time, sandraismith@... writes: > He also receives allergy shots---------the IGG type. Hi , Are these different from the other allergy shots?? Can you explain them to me please? Thanks!! Sandi, 's Mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2003 Report Share Posted April 29, 2003 Xan, May I ask what is Nissen surgery? I am so glad to hear Kaitlyn is doing fine. Isn't it amazing the problems acid reflux can cause. I never in a million years dreamed this was our underlying problem. And to think my insurance was giving us a hard time about covering Prilosec. One would think they would rather pay for 2 little purlple pill versus multitudes of ear drops, and antibiotics for ears and sinuses. Sharon s mom Reflux Hi, my Kaitlyn had reflux from the time she was born until last October, when after years of diet, medication and almost having nothing she could actually eat or drink. We did the Nissen surgery, we had put it off for years, but her esphoghaus was so burned and raw, with problem spots in her stomach ( we still have to have Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2003 Report Share Posted April 30, 2003 Autum, What a wonderful and informative post. Thank you. I am still learning how to help , and this is very helpful. We are very very fortunate as her current meds seem to be doing the job. Praise God. I wish I would have been able to link the two but I had never ever heard of this before. Much thanks Sharon s Mom Reflux I have been lurking for a while but just thought that I would add several comments regarding the recent topic of GERD. There appears to be several children that have it in this group. I underwent the Nissan in November of 2002 for severe GERD and a hiatal hernia. I had been diagnosed with Barrett's just two months prior via biopsy issan in 1999. My Dad's brother was just diagnosed two months ago with stage 4 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2003 Report Share Posted May 8, 2003 Also spoke with the ped about 's " urps " as she calls them (spitting up in her mouth). He seemed surprised by the fact that she does this a few times a day. I guess I didn't get the message across the last time I brought it up. Lesson learned: don't say " I'm concerned about her reflux " but rather say, " She's spitting up several times a day, is that any cause for concern about erosion of her esophagus? " He's having us do a completely dairy-free diet for two weeks just to appease me, since I believe in the dairy/reflux connection in my kids (spend a week with Kate and he'd believe), then if there's no change we'll be refered to a peds GI. I think it is possible the dairy-free won't fix it, as she has these spit-ups at times I don't expect, like when she's eaten nothing or just water or medicine or soy milk, no dairy. But it's definitely more severe with dairy -- she spits up all over the place with yogurt, for instance. I remember a time when we were on a " Gogurt " kick, man, it was like having a cat again, all the little piles on the carpet. Nice to be working toward a resolution. (mom to Kate, born 9/19/02, dairy intolerant; and , age 4, dairy intolerant -- currently has polysaccharide antibody def, previously had transient IgG, IgA, t-cell & other defs) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 25, 2004 Report Share Posted September 25, 2004 Sheila: Have you tried going GFCF (gluten and casein free)? My son's digestive system is in much better shape without dairy, especially, and he is much calmer without the wheat. If you want to explore this option, go to gfcfdiet.com, or autismndi.com, and there is a lot of great information there. reflux My son has had reflux since he was three weeks old. I thought he had gotten over it when he turned one. Come to find out that it was contributing to his sinus infections. We are in between insurance, and buying the perscription to Priolosec or Prevacid is out of the question. What kind of options do I have? What is a good site that would give me pointers on what to do to reduce the acid? I'm thinking I might limit his liquids a bit. He drinks so much, and is hyperactive. I can't slow him down, although I wish I could. I know a lower fat diet will help. I'm trying to think of everything, but he never makes it easy! Any and all help welcome. Sheila Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 25, 2004 Report Share Posted September 25, 2004 eyelovebrian@... wrote: > We are in between insurance, and > buying the perscription to Priolosec or Prevacid is out of the > question. > What kind of options do I have? Prilosec is over-the-counter -- 6 weeks' worth for about $28.00 in the grocery store. That's for adults -- I don't know what the percentage size of the dosage would be for a child. > What is a good site that would give me pointers on what to do to reduce > the acid? Nothing ever worked for me until nexium and then prilosec ... > I'm thinking I might limit his liquids a bit. He drinks so much, and > is > hyperactive. I can't slow him down, although I wish I could. I know a > lower fat diet will help. I'm trying to think of everything, but he > never makes it easy! Any and all help welcome. Limiting liquids an hour before bedtime should help a lot. Not eating closer than three hours to bedtime is supposed to help. Patty Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2004 Report Share Posted September 27, 2004 If OTC Prilosec is too expensive, you could try something like Zantac, otc also. I know someone who was able to get their kids on Peachcare while going through a change in insurance. There has been an interesting thread on chelatingkids2 about eosinophilic disorder and Singulair - where too many eosinophils collect in the esophagus causing reflux. I'm not sure why, but Singulair was prescribed - maybe it was the high eosinophils being caused by allergies and the Singulair helping with that and reducing inflammation. I can't remember exactly. Owen has high eosinophils - we're told from food allergies - and has been on Singulair (for RAD) since 2 years old. Never any problems with reflux though. Interesting...... good luck to you! In a message dated 9/26/2004 8:53:34 AM Eastern Daylight Time, autism writes: -----Original Message-----From: eyelovebrian@...Sent: Sep 25, 2004 4:53 PMautism Subject: refluxMy son has had reflux since he was three weeks old. I thought he hadgotten over it when he turned one. Come to find out that it wascontributing to his sinus infections. We are in between insurance, andbuying the perscription to Priolosec or Prevacid is out of the question.What kind of options do I have?What is a good site that would give me pointers on what to do to reducethe acid? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2005 Report Share Posted June 13, 2005 We all suffer from eating disorders, some more physical, some more mental, some more emotional, etc. Most of us have some of all of them. I surely hope you are seeing a counselor who is experienced in weight loss issues. Can't your doctor recommend someone, or doesn't have someone available? As you've found out, being too tight can cause all sorts of problems, and if you're doing stuff like eating ice cream and other high calorie liquids, blending twinkies or candy, or other things like that (no, I didn't make those up), then you'll gain, as you found out. Good luck getting some outside help, and keep coming back here for whatever we can do. dan Monday, June 13, 2005, 1:55:35 PM, you wrote: JK> I am suffering from an JK> eating disorder and trying JK> to deal with it. Dan Lester, Boise, ID honu@... www.mylapband.tk Dr. Ortiz, Tijuana, 4/28/03 323/209/199 Age 62 Fair is whatever God decides to do. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2005 Report Share Posted June 13, 2005 Yes, this type of aspiration pneumonia is very serious and very difficult to recover from. Thanks for this post describing your experience. This is one of the many reasons those with ANY reflux must get checked out quickly by their band surgeons. The longer they wait, the mosre serious the dmage, and - often - the longer they must be unfilled to recover from the reflux's damage. Those who get in very quickly when they start with reflux often need only a small unfill, and lose no weight-loss time at all. Sandy R --- In , " Knapp " <liv2drm@h...> wrote: > Hi. I am new to this site. I was banded in June 2003. I lost 50 lbs and > have gained it all back. I am suffering from an eating disorder and trying > to deal with it. At the begning of this year i expereinced the same > symptoms many of you are in relation to reflux. During the middle of the > night i would wake up couging feeling like i was choking, sour taste, coming > through my nose, etc. I did not go to my fill doctor as i feel she is not > very understanding. I went to my primary physican who knows about the > lapband. I was refluxing so bad I was aspriating in to my lungs and my > lungs were filling up. i was very sick for a while. I had to get an unfill > to let my stomach rest and heal. I would definatley encourage each of you > to get your symptoms checked. And really question and review what you are > told. Only you are truly watching out for your health. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2005 Report Share Posted June 14, 2005 : I just finished recovering from my double pneumonia for the same thing... My reflux was caused by a hiatal hernia.. even with an unfill I was still refluxing.. now its almost 3 weeks post-op from the surgery that fixed the hiatal hernia and replacement of my band.. and I'm back to work already... and waiting impatiently for the end of July when I can get my first fill again.. I hope I don't gain too much weight back (I can eat like I could pre-band) It's scary that I was causing myself my own pneumonia.. I kept putting off getting checked up because of work.. it was very very stupid of me.. Get the right medical help as soon as you can.. hanging in there -Donna On 6/13/05, Knapp <liv2drm@...> wrote: > > I was refluxing so bad I was aspriating in to my lungs and my > lungs were filling up. i was very sick for a while. I had to get an unfill > > to let my stomach rest and heal. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 6, 2005 Report Share Posted November 6, 2005 Two more questions, has the band caused us to have reflux, or is it something we always had, (if I have it) and second if someone has been forcing food down can that damage the band. Tracie K. Bartek - Aledo, TexasDr. Aceves Lap Band Doll248/203/150DOB-6/24/05 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2005 Report Share Posted November 7, 2005 I apparently had it prior to banding, as it was visible immediately after banding...and I HAD had a lot of heartburn prior too. I don't think the band really makes it any worse, as long as you are careful not to overeat...and I don't get the bad heartburn anymore, because the band kind of keeps all those acids down in the lower part of my stomache, below the band.BIG HUGS, AND GOD'S BLESSINGSDawnita MayLowpass, Oregon10/05/05 dob "Iraida" 209/190/135 5ft 3inches"before" photos at: http://dawnita1961.myphotoalbum.com/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2005 Report Share Posted November 30, 2005 In a message dated 11/30/2005 7:04:33 PM Eastern Standard Time, tamaratornado@... writes: I take digestive enzymes... May be the problem. Look and see what the enzymes are made from. I had that very problem years ago. I couldn't take the enzyme tablets unless I'd just eaten. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2005 Report Share Posted November 30, 2005 Well, I'm not eating any cheese or gluten... I take digestive enzymes... hmm I'll have to think about it... - T --- wrote: > ------------------------ From: kathy matthews <kathymatthews@...> Subject: Re: " true acid reflux " ? " Heartburn " and Gerd are not always from acid. In my personal experience, it is most often a lack of acid. This " lack of acid " can be more irritating than the acid which the stomach is actually designed to handle. The wrong food (usually avoids), wrong combinations and lack of digestive acid & enzymes is the usual culprit for " heartburn " or most digestive problems. __________________________________ - PC Magazine Editors' Choice 2005 http://mail. Quote Link to comment Share on other sites More sharing options...
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