-
AuthorSearch Results
-
AnonymousInactive
doesn’t sound like he really needed the prevacid–i think i’d work with him a litttle while first—he’s still getting used to the idea that his ears aren’t going to hurt when he tries to eat. can’t believe the docs didn’t check his ears before–that’s like one of the first things the docs would check whenever i took my babies in.
the surgeon that did sylvia’s fundo told us that ALL babies have reflux, they just don’t all have acid reflux. he also told us he didn’t think it was a good idea to change the natural ph of their stomach for a long period of time. this is why i have fought taking the meds myself for years–but i’m going to have to give in and take it or else go ahead and get surgery. the doc tried to tell me this 15 years ago bought i didn’t want to do surgery—wish i had done it back then when i was feeling bettter. if i had known i had a hiatal hernia back then, i probably would have gone ahead and gotten the surgery.sounds like you have gotten your little one’s main issues figured out, now it’s just a matter of taking care of the residual after-effects.my 3 girls that got tubes were all different. they also happen to be the 3 kids that have celiac–but i think that is just coincodence. tianna got alot of ear infections—and even got 2 infections after she got her tubes, kassies only got one infection, but the fluid never went away. they got tubes on the same day when they were 11 months old. molly got one ear infection and we went through 5 different antibiotics—-some didn’t work, some she was allergic to–but we had a dickens of a time getting rid of the ear infection. we kept seeing a different doc every time we went in—and several of them would say, “if this doesn’t clear up, she may need tubes.” then, we would bring her back in, it would be a different doc, and he would sy the same thing. (we were waiting for a new doc to come and our ER docs were taking turns keeping the office running) i finally called the office and said if it looked like she was going to need tubes, i’d just as soon go ahead and do it. the doc made the arrangements for us to see the ENT and she got tubes at 8 months old. Just a funny thing, that is not important, but after her surgery, the ENT came out and was talking about having his grand daughter over and he took off his booties and showed us that his toe nails were painted—his grand daughter had insisted—i thought he was a really funny guy to show us that.AnonymousInactivemy daughter is doing great. when her baby teeth came in–she cut the first one 3 days after her fundo—she had enamel hypolasia. when she was 3 she had to be put under and have about 12 teeth worked on–she ended up with 8 or 9 stainless steel crowns. i thought it was my fault because i had given her pediasure in a bottle to get weight on her so we could avoid having to have a g-tube put in.
the dentist told me that her teeth looked clean, but that she had enamel hypoplasia. i was a litttle worried about how her permanent teeth would come in–but the enamel on them is fine. she has hardly been to the doctor since she had her tonsils and adenoids removed. she is a fairly skinny little thing–but almost all of my kids are that way. we did have to check her for celiac last year because she was having alot of stomach aches and we know she has oneof the main genes–but she did not have it. we also had to check her for juvenile rheumetoid arthritis last year because she was having some joint pain. but that came back ok, too. just various aches and pains that came in clumps for some reason or another.
recently, she has been getting alot of mildly sore throats–i can see the infammation back by her uvula—it looks like a film atttaching it to the sides of her throat, but she doesn’t have a fever. i’m thinking maybe she has some allergies. but, overall, she has been in good health with very few problems. she’s a smart little second grader with hair clear down her back and big eyes—she looks so much like my twins did when they were little. she is above grade average in reading and at grade level in everything else. she doesn’t seem to have been permanently damaged by her two years of failure to thrive.AnonymousInactivegood idea to call the ped—i would explore every possibility there is. it really does not sound like this is a reflux issue—relux may be an irritating problem connected to whatever else is going on, but it does not sound like it is the main issue. i think the surgery would be a really bad move and i would not even leave it on the list of considerations, if it were me—and my child has had the surgery, but she was REALLY severe. there have been very few babies on this board that have ever had to have the surgery done. sylvia is only one of a handful in the 8 years that i have participated on this board.
i remember when i first joined the board, sylvia was my 9th baby, and i had had other fussy babies, she was just worse than the others. i remember reading the other mothers’ posts and thinking that sylvia was not nearly as bad as the babies i was reading about, when in fact, she was far worse. i think the difference was that most of the moms were young and dealing with a first or second baby—-i was 40 and i had 9 children–i’d seen and dealt with alot over the years. i remember telling our ped gi that i probably sounded so insensitive when people would say how nervous they were when their baby had to have an upper gi—i’d be thinking, you’ve got to be kidding, your baby is going to swallow some white stuff and they’re going to take some x-rays—he told me that no, i wasn’t insensitive, i’d just had a lot of kids.I have actually had to lay myself across a 4 year old to help hold him down for stitches, while he yelled at everyone to get off him and get off his legs—all the while i am trying to keep from laughing at my child because he was so mad at being held down. the nurse told me they could get someone else if it was bothering me, but the doctor knew better and said, “I think moms alright.” i wonder if he could see that i was trying to keep from laughing.when my girls had been diagnosed with celiac and we had one of them in seattle children’s hospital with an eating disorder, we took the other two in for a blood draw to test their Ttg levels—-and it was the blood draw from hell. my 5th grader threw the biggest fit i think i have ever seen. i swear she had 12 arms and legs with 20 fingers on every hand and prehensile toes. we would pry one hand off and another would grab onto something else and she must have been screaming–i probably blocked some of it from my memory it was so awful–but hilarious when we look back. people were sticking their heads out of doors to see what was going on. finally, my older daughter and i both were holding her down on the floor–i think maybe someone else was helping, and the poor, flustered tech finally drew her blood, and we let her up. then she walked over and kicked my older daughter in the shin. i went upstairs to get something from the pediatric floor that we had left when we had gone to seattle. when i got back down, the tech came out and said that she was sorry, but they did not get enough blood—and we had to go draw my daughter’s blood again!!! i figured she deserved it after the fit she had thrown. this made me laugh again just to type it. i guarantee you, things are going to get better and some of these things that seem so awful now will be really funny when you look back.kevieb2012-03-02 23:46:54
November 27, 2011 at 3:53 pm #69454Topic: can GERD return?!
in forum HELP!!!AnonymousInactiveHI Everyone. I must admit it’s been a while since I’ve been on here but I’m so glad to see it’s still available. SO here’s my issue: DD was diagnosed with SR at 4 weeks when she started spitting up blood. We switched from one med to another until we finally settled on 20 mg of prilosec/day which took care of all of her symptoms. BY 9 months old we took her off meds and had a minor week or two of rebound but nothing ever since. She’s almost 15 months now, and the last two weeks she seems to be exhibiting symptoms again!!! At first I thought that her clingyness and constant wining were developmental and I didn’t think much of it. But now her sleep is being effected and last night was the worst. She did the typical screaming in her sleep and from start to finish it took me over 4 hrs to get her to pass out which is completely abnormal. I could hear her refluxing and it was constant. This isn’t happening every night, but maybe 2-3 times a week for the past two or three weeks. She’s gotten tons of teeth and they haven’t been a major issue so I don’t think it’s that. She tested negative for all food allergies back at 4 months of age, but we never tested celiacs.
Anyway, my question for all of you is:
can GERD return FT or is it just episodic due to stress, food, etc?
considering how long she went without symptoms and her age, should I be getting her tested for any other sort of problem?
Is it worth doing a celiacs test?
OK, thanks mamas I really appreciate it!!!
November 14, 2011 at 6:03 pm #69357In reply to: LPR/ what is going on?
AnonymousInactivesorry i’ve been so long getting back–i’ve been a bit preoccupied with two daughters getting married!
my son that cried for two years seemed to transform almost overnight—i had to be down for several weeks before my twins were born, and during that time he just seemed to settle down and stop crying and he put on osme weight. i think he probably had MSPI and he outgrew it right about 2 years old. good thing, i would have been loony if i had a crying two year old and newborn twins. my son had other issues going on, though, too. we thought he might be autistic–he went to a special pre-school for two years and then a regular preschool for one year before he went to kindergarten. he didn’t talk until he was 3. he spoke gibberish and had echolalia. we did some programming-like exercises with him. he eventually started talking and went to a regular classroom in school.it seems a little strange that the ENT would make a recommendation about a PH probe—because that is really not his area of specialty. a GI would be the one to talk to about doing a PH probe.have you seen a regular GI or a pediatric GI? i would recommend seeing a pediatric ENT instead of a regular ENT.oatmeal does not contain gluten, but it is very likely to be contaminated. we buy guaranteed gluten-free oats and my celiac girls don’t have any problem with it. if you are wanting to keep your son completely gluten free to eliminate all allergens then the oatmeal needs to go, too. you also need to watch for hidden gluten in ingredients.sylvia did not have any problem breathing when she was awake–so i think the doc was a little off when he said your son would not be able to suck on the lollipop without trouble—sylvia only had trouble when she went to sleep. if i was holding her, she sounded fine—-until she fell asleep—then she sounded like she was struggling to breath.why did the ENT think the outcome of the PH probe would be to keep doing what you are already doing?November 8, 2011 at 11:35 am #69329In reply to: LPR/ what is going on?
AnonymousInactiveif your son is having a BM every other day i’m not sure they would even consider that constipation—ideally, they should have about 3 soft BMs a day, but i think if he has been consistently this way–it may just be what is normal for him at this time.
my oldest daughter used to spit up so much. she would xspit up long after she had been fed–but she was the happiest and most content of my 9 children as an infant. my 3rd child cried for 2 years, was very small, and spit up all the time. he had tons of ear infections, too. looking back, i think he probably had MSPI.
sylvia started out having problems with desatting–she came home on oxygen. she was on it for a month. i think it was her reflux that was causing the desatting. she was so fussy—we had to hold her almost 24 hours a day for the first two months. i slept in a recliner with her lying on my chest. she spit up more and more over time. i would nurse her and she would spit up and then i would nurse her again. when they did a fundo, they discovered a hiatal hernia that had not shown up during 2 upper GIs and a scope.i have really bad reflux, also. i have had it for 20 years now. i have a hiatal hernia—pretty sure i developed it when i carried my twins. the surgeon talked to me about having a fundo in my early 30s–i didn’t want to do it back then—but h told me it was just a matter of time before i would have to have it done. i have had to have 3 scopes in a 4 year period to have my esophagus dilated. my most recent scope was last december and it showed that i had eosinophils—enough that i could possibly have EE. i have never had eosinophils show up before. i thought it was only food allergies that could cause them, but our ped GI told me that environmental allergies can cause EE also. he also tells me that EE is a contraindication to doing a fundo. i fight taking a PPI, although i really need to be on one all the time.our family was involved in a celiac study a number of years back and we discovered that kevin and i and 8 of my 9 kids all have one of the main celiac genes. both of my twins had scopes done and neither of them showed celiac damage–tianna had one spot that was questionable—but their Ttg tests were positive. celiac damage will not always show with a scope—it can only get about 6 ft into a 22 ft small intestine.if you have him gluten free, celiac testing would show up nothing—even if he had it. they need to be eating gluten for a celiac test to be positive and for damage to show.anyway—i was giving you all the history to let you know we have dealt with alot of what you are talking about. i know that every child is different—but from most of what you describe, it really sounds like reflux is not the main issue that is going on with your son. the enlarged tonsils and adenoids seem like they could be a very likely culprit to be causing his problems.if they are both enlarged, and he is a mouth breather—i am surprised that they haven’t recommended that you get both of them removed.i have 3 kids that have had tubes in their ears. my twins got them at 11 months old and molly got them at 8 months old—interestingly, they are also my 3 kids with celiac disease. i’m sure my 3rd son would have done better with tubes. he always seemed to have a cold for most of the winter–i suspected allergies, but testing showed no allergies. when we had him tested for celiac, we discovered that he is IgA deficient—-so i think that he probably does have alot of colds through the winter.i’ve rambled enough—i’m interested to hear how the ear check goes today.November 8, 2011 at 8:49 am #69327In reply to: LPR/ what is going on?
AnonymousInactiveHe had a scope at 9 months. They did biopsies and found no inflammation at all on a microscopic level. Not even slight irritation which shocked me really. They tested for EE and celiac. Nothing!! His used to have arching episodes a lot when he was younger, but like my 4 month old daughter his symptoms were constant hiccups, gulping constantly, rubbing and attacking face and ears, very fussy all day, very poor sleep, etc. I always suspected motility problems bc of constipation issues and he used to reflux hours after his last bottle. His symptoms have always been in the sinus area. Every 40 minutes in sleep he would swallow, rub his nose and ears. Now he swallows when he sleeps but I can’t tell if its his drool cuz he is a mouth breather or maybe postnasal drip. So between the adenoids tonsils and vocal cord irritation I have always suspected it was a result of reflux. If you look up PPR which is silent reflux it says most patients show no esophagus damage. Most of the damage is in vocal cords and sinuses. It just shoots up and bc of the esophagus has a protective lining its gets away with little damage. I have him on a gluten and dairy free diet bc my husband and I don’t do well with dairy. As for gluten I eliminated it completely a couple of years ago and goodbye stomach issues. So, I just would like to keep him on a low allergen diet. Thanks for your replies!!
September 20, 2011 at 1:33 pm #69081In reply to: Nobody Understands
AnonymousInactiveHi Diana,
Please make the call….its very difficult to do and sometimes scary, but finding the help you need will only help things move in a positive direction. My husband and I have also gone and it’s been the best thing for our marriage. If family is not supportive, then maybe they are not the right route at this time. Only you can say for sure whether it’s worth it to use them at a time like this. Maybe another mother or someone in your church or preschool or neighborhood community that you feel connected to. Any babysitters you have used with your son? Responsible college girls who could take the baby for a walk around the block while you sit in silence for 20 minutes? Now is the time to think about how to help him but also how to help yourself. Counseling will go a long way, but also getting some breathing room in your everyday life will help tremendously.
I’ve included the whole story of testing for both my kids below….so this is my warning—it’s long! Read in installments if it’s too much! ☺Testing like this is very invasive & I personally would recommend trying the higher dose of meds, or trying zegerid at a 3X a day dosing, before going into testing. I also emailed and talked with Dr. Phillips, which Laura recommended to you. It was great to get his advice and perhaps his office can email you some of the dosing info that they used to have posted on their website. I would ask specifically about the higher dosing of the ppo so that your husband could feel better about that. Dr. Phillips invented/developed/discovered the mix for zegerid, which is just like prilosec (omeprozole) but with a stabilizer. You can take it any time of day, regardless of whether you have just eaten. Timing the feeds is very difficult for the babies on these meds but with zegerid you don’t have to worry about that.
For testing, my son went through an upper GI, endoscapy, and ph probe test—all pretty invasive tests and all at the children’s hospital. He “had to get the upper gi” at 5 months just to get the ppo (prevacid) meds prescribed. When my daughter was born (second child with reflux) the ped wanted to do an upper gi and I felt certain that it was reflux, so I called our specialist and said that I wanted to try zegerid without the upper gi. She was only 6 weeks old and we felt the upper gi was so invasive and wanted to avoid it since I really knew what was going on. The specialist, who knew me well at this point, was fine with prescribing zegerid without an upper gi. Again, this shows a huge difference in docs and their approach, and also a difference between a regular ped and a ped gi.
OK, so after having that done when my son was 5 months old Lucas was put on prevacid –we weren’t truly helped until we got onto zegerid. Prevacid was ok, but it was compounded and that is often very unstable– Laura has a post on the science behind that. My daughter went straight to zegerid because we’d had such a great experience with it with my son. So she was about 9 weeks old and going on zegerid 3X a day. My husband wasn’t thrilled, but he soon saw huge improvements in her—you couldn’t ignore the results.
So, once my son was on zegerid at around 8 months his reflux started to be more tolerable and then I took out dairy and soy from both our diets, I was nursing. When things were still very difficult at 10 months old he had an endoscopy & ph probe. That’s the test that showed he has a hiatal hernia (unusually loose opening of the lower espohageal sphinctor or LES valve)– the opening into the stomach from the esophagus. An endoscopy involved IV, what they call “twilight” sedation, so they aren’t totally out, but mostly out of it, and the tube goes down the throat and into the stomach and has a camera on it. AFter this procedure, on the same day my son had a ph probe done, which tested acid levels in his esophagus. This involved sending him home from the hospital with tubes down his nose into the stomach and a little data box connected to it, he wore that in a tiny fanny pack. We had to go back the next day to take it all out and get the data. The ph probe showed that in 24 hours he refluxed 230 times (and this was at 10 months when he was sitting and standing most of the time!).
Between the hiatal hernia and this ph probe reading, I was finally justified in my concerns for him and totally legitimized with husband, family, friends, anyone. I wasn’t happy to know these results, but found incredible relief in knowing that it wasn’t “all in my head”. No one had ever said that to me, but after a while the implication from folks who say things like, “I’ve just never had that problem” “My babies just always slept when they were tired” and those sorts of things you can start to doubt yourself.
We were then sent to a surgeon to discuss surgically repairing the hiatal hernia, which is a bit controversial. He took one look at our son, who was 50% for growth, and said he would not recommend the surgery for our son and to come back in a year if things got worse. He said that although we’d had a tough time the surgery was for babies who were failure to thrive, babies who had been repeatedly hospitalized, babies who were more sick than ours. Turns out this was the best advice EVER. By age 17 months the sleep was still terrible and I finally took all gluten out of his and my diet. This was our magic last thing. Getting bigger helped the reflux a lot. But taking gluten out of the diet was AMAZING. Within a week he was sleeping better, not great, but better. Within six months I could see major improvements. I weaned him at age 24 months, and did the gluten/dairy/soy/beef free diet with him for six months. So we had a combination of food intolerances and reflux which really clouded the whole thing. He tested negative for food allergies and has been tested two times for celiac disease (a condition where removing gluten clears up a lot of problems). So, for now, he’s dairy and gluten free in his diet (he’s now ok with soy and beef). At this point he’s still on zegerid and could be for a long time. I get nervous about that, but the ped gi tells us that the damage from acid over time is much worse than the potential problems from taking the meds.
For my daughter, she skipped the upper gi, was on zegerid 3 times a day as a young infant, moved to 2 times a day maybe around 18 months of age. She had lots of ear infections. Double ones, and after a while she wasn’t responding to antibiotics. We did this crazy injection of super antibiotic for the last one, and then two weeks later she had a double ear infection again. The ped recommended ear tubes. She wasn’t in day care, she was home with me, she’d been breastfed, all the things that are supposed to help against ear infections like this. But reflux can really complicate ear infections as well. When they did the ear tube surgery, the specialist did an endoscopy as well—she was 17 months old. We didn’t do the ph probe for her, the specialist said the endoscopy was enough to see why she had the reflux and the ph probe would have been overkill for her. He then said she didn’t have the full hiatal hernia, but had a very loose, unusually loose, opening to her stomach. I’m not sure the difference between her loose opening and my son’s hiatal hernia, but they were both very justified in still showing signs of reflux and still being on meds. We are trying to cut back on her meds right now and I’m seeing signs of reflux again, so we might have to go right back to her old dose.
As for crying….I did not do CIO with my first at all. We all have our philosophies and I don’t want to start an internet uproar on this site, but my personal feelings with my children were that they were in pain and I did not want to leave them to cry. With my second, I tried the baby whisperer phil
osophy early on and it did not work for us well at all. I was so disappointed…really crushed that I couldn’t get it to work. I’ll leave it at that, it was awful. I also let her do some CIO with napping around 18 months old and after three weeks of hearing her scream at naptime I gave up. It was clearly not working for her and definitely not for me! We were the wear the baby in a sling, nurse on demand (within reason) sleep with the crying baby family. These choices are very different from lots of people. I certainly am not recommending them (except for the sling and nursing! I can 100% say those were great choices if you can make them). But I am in no way suggesting that sleeping with your baby is better. Or that doing CIO is “wrong” or that never letting them CIO is “right.” I did what felt right for myself and my babies. I can definitely say that both my children needed me in order to fall asleep. I fully agree with the thinking that they need to self soothe at some point. I guess lots of people reach that point before I did! Looking back, I probably should have helped them learn to sleep without me at an earlier time. That being said, they were so miserable as babies that I had no idea how to get them asleep without the nursing/burping/nursing cycle.Ok, this is waaaaay too long! I hope something in here is helpful. I hope you can hang in there! Let us know what you need.
September 19, 2011 at 7:12 pm #69075In reply to: Do you think this is reflux?
AnonymousInactivemost places have a gluten free menu any more. when my twins were still in high school, i can remember them calling each other, when one would be on a sports trip and the other would be home, and asking the one at home to look up the menu of certain restaurants to see what their gluten free menu was. one of the coaches was really good and when they bought pizza for the team, he went out and bought salad for my daughter. he also taught one of her classes at school and when they were cooking some kind of chicken that had gluten in it—he made sure and cooked some chicken in a different way that was safe for her. he had taught health, so he knew what celiac disease was, which helped.
maybe you can find out what is safe to eat wherever you and your husband are going ahead of time, and not even mention it to him, then just order what you know you can eat and maybe he’ll never know the difference! i don’t know why men can be so stubborn about things some times!!!sounds like you got quite the run around until you took things into your own hands. with your dad being positive and your history–you probably do have celiac—-your results were probably skewed by being gluten free for 3 weeks when you were tested.September 19, 2011 at 1:56 pm #69072In reply to: Do you think this is reflux?
AnonymousInactiveI agree how frustrating it is. After my middle son was born, I had some health issues. I saw an endo, a gi, a neurologist, and my ob. The endo told me my thyroid was out of whack but not enough for meds, and basically I was over weight and that’s why my liver enzymes were high. The gi told me it was IBS and that I needed more exercise and water. The neurologist showed me positive for lupus, told me I was depressed, had fibromyalgia, and maybe chronic fatigue. She sent me to the sleep specialist who told me my tonsils and adenoids were enlarged. My gp put me on a med that is no longer on the market (it helped!) I met the girl at work who has celiac and I went gluten free. Everythig cleared up. My dh used to tell me that I would have to dig a hole in the back yard from now on since everytime I went to the bathroom I clogged it. I can always tell when i get gluten because that returns. When j don’t eat it I don’t have the problem.
No one around here understands gluten sensitive. Either you have celiac, or your ok with gluten. Makes diagnosing anything impossible. My dad is positive. My mom said she can trace my stomach issues back to when I was 3 weeks old. I had all the same things my middle son had. Rashes, acne, PMDD, panic attacks , major anxiety, etc.
I even told my pedi that I was positive for celiac just so he would take me seriously.
My husband on the other hand…… Just doesnt get it. He works a lot so I do all the cooking and shopping. It becomes A huge issue when he wants to go out and i pack my own food……
September 19, 2011 at 12:05 pm #69071In reply to: Do you think this is reflux?
AnonymousInactivei just realized you had inserted comments in your post!! low weight or short stature is reason enough, alone, to test for celiac. often, a child with celiac will develop lactose intolerance because of the damage to the villi—but once they go gluten free and the villi damage heals, the lactose intolerance will go away. i’d use the pediasure if they can tolerate it–i can’t remember if it is dairy free and gluten free—but that is how i got weight on sylvia when they were considering putting in a feeding tube.
with all the antibiotics they have been on–i’d put them on probiotics. sylvia got esophageal thrush when she was just a little over a year. my family doc said she couldn’t have thrush if we couldn’t see it in he mouth–but i knew better, and asked the ped GI. he agreed she could, and just treated her (he is 3 hours away) with a course of diflucan and she started to eat, sleep and gain weight. he said that he thought that any time she had antibiotics we should treat her with a course of diflucan afterwards. my daughter kassie also had esophageal thrush when she had her scope done at 14—and she had never had thrush in her mouth that we were aware of. just something more for you to consider……it really hurts—i had MRSA a couple of years ago and the antibiotics were so harsh that i got thrush in my mouth and esophagus.September 19, 2011 at 11:48 am #69070In reply to: Do you think this is reflux?
AnonymousInactiveif you were gluten free for 3 weeks before being tested, it could have screwed up your testing. you have to be eating gluten when you are tested for celiac disease. even a person with known celiac will test negative if they are following a strict diet. even dr green is now acknowleding that there is a gluten sensitivity that is not celiac disease. people are still bothered in various ways and get symptoms from eating gluten, but they don’t get the intestinal villi damage that a celiac will get. no one can digest gluten well for some reason, even if it doesn’t bother them—and we have messed with wheat so much to make the gluten content higher—-it is no wonder so many more paople are having gluten issues, whether it is true celiac or just a gluten sensitivity.
about the time my girls were diagnosed with celiac was when they were realizing that celiac was far more common than they thought. i don’t know if it was because of better tests for it or for some other reason. the Ttg test is a very reliable test. if you have a positive Ttg—you’ve got celiac. there are only two other things that can cause a positive Ttg—and they are both not very common. one of them is graft vrs. host disease–you would have to have had a transplant for that one—and i can’t remember the other one.i remember a lady at church asking me if my girls got sick when they ate gluten. (her husband was a doctor) i told her that they didn’t (i actually think one of them will, if she eats enough)–anyway, she told me that if they didn’t get sick when they ate gluten that they might not have it because it was a really popular diagnosis at that time. i told her that my children had been tested with the Ttg test–plus, we could see their blood levels rise and fall depending on how well they were following the diet–not sure if i told her that. it really irritated me and i remember thinking, “no wonder people have a hard time getting a diagnosis.” i had mentioned the Ttg test to one of our doctors in town, after my girls were diagnosed, and he told me he had never heard of it. the AMA was working on getting the word out to doctors at the time, but i remember our ped gi telling me that most adult GIs did not use the Ttg test.when we first went into our localhospital lab to have the test run–they had never heard of it and had to look it up. i learned of one other child in our town who had celiac and i called and talked to his mother. i had had my whole family tested when we suspected the first child of having it. at the time, even our ped GI wasn’t sure because the original test on her had been an EMA (i think?) which was positive, but her scope was really iffy, plus she had reflux damage. he told me that the test that had been run told him she had damage, but it didn’t tell him what was causing it. he wanted me to put her on prevacid to clear up the reflux damage and to leave her on gluten—then we would test again in 3 months. if it was reflux damage, her numbers would be normal, if it was celiac, her numbers would still be off. we had reached our stop-loss with our insurance, so since we didn’t have to pay anything for testing, we decided to go ahead and test several more family members. i chose myself,(i have fibromyalgia) one of my sons,(ian) one daughter that had been nauseated for several months,(kassie), and one of my daughters that was so thin her wrists looked like they would just snap and she had been really rashy as a toddler.(molly)my test came back negative, ian’s test came back IgA deficient–so it was useless, kassie came back positive and molly came back positive. kassie had already had a scope that did not show any damage, by the way. when the ped GI saw the test results—3 children in the family with positive Ttgs, he told me to put them gluten free and didn’t even bother to do a scope on molly. we had to have different testing done on ian—and learned he carried one of the main genes, but did not show any signs of celiac. i then had the rest of the family tested, but no one else came back positive.it was a little later when i ran across the celiac study being done and since we had two or more with positive tests, we were eligible for it. it saved us thousands of dollars on genetic testing and now we know that we should be tested periodically, and especially if anyone started to show symptoms. sylvia was having stomach aches and wretching episodes last spring (she can’t throw up because of her fundo) so the ped GI said we had to suspect celiac, and we tested her. she was negative, and the symptoms went away.italy has a really high rate of celiac and they test all of their school children routinely at a certain age. the more i have learned about celiac, i wonder why it isn'[t tested for routinely by doctors in the states.i would get frustrated after my girls were diagnosed because i felt like gluten free kind of became a fad for awhile and people were not understanding the difference between celiac disease and the gluten free fad–plus, it wasn’t being acknowledged yet that some people really did have a gluten sensitivity without having celiac disease. it was kind of helpful, though, too, because they started coming out with so many gluten free products.i think the “fad” part of it is over. i’m not sure the docs still know enough about it and what kind of symptoms it can cause, and i’m not sure they know the right tests to do—-especially when i hear someone say that their doctor told them to go gluten free instead of testing them first.i’ve rambled on and on, i know, but sometimes i just feel like people don’t understand gluten problems–or they don’t want to. our ped GI told me that going gluten free might help my fibro—but i still haven’t gone totally gluten free—i really should give it a good trial. we already cook all of our meals gluten free. i would only have to change my snacking and the bread i use for sandwiches.the most accurate testing to have is to have a total IgA serum and a Ttg IgA test done–but you have to have been eating gluten for awhile when you get tested. sorry for the rambling, but, if you have been gluten free this long and know that you feel better—then you probably have celiac or a non-celiac gluten sensitivity—either way, it makes you feel lousy.i expect to see it show up in some of our grandchildren since almost all of my kids carry one of the main gene.September 19, 2011 at 8:23 am #69068In reply to: Do you think this is reflux?
AnonymousInactivekevieb wrote: we’ve had reflux and we have celiac. i’ll start with you’re middle son—-i think your doctor is an idiot to tell you to try an elimination diet. sorry for sounding so rude, but your son is old enough that he should most likely be producing Ttg antibodies. I agree with you 1000%.The problem is my husband and I don’t see eye to eye on the Gluten issue. Not even with me. if you put your son on an elimination diet you could end up keeping him off of foods that he doesn’t need to be off of—that comes from dr. green, who is supposesd to be “THE” authority on celiac. the tests usually are not accurate in children under 3 years old because they don’t always produce the Ttg antibodies at that age–don’t know why. you need to make sure that the doc runs the right tests for celiac also. i have 3 girls with celiac disease and we have been doing gluten free for going on 6 years now. we were lucky enough to get in on a celiac study being done by the university of california,irvine—and they did not only celiac testing, but genetic testing on all of us—and it didn’t cost us anything. my husband and i and 8 of my 9 children all carry one of the main celiac genes—for some reason, the disease has only activated in the 3 girls so far—but i periodically have myself tested when i am having other blood work done—and i really should have everyone else periodically tested, too–but i don’t seem to get it done. we used to get the celiac girls’ blood tested every 6 months to see how well they were following the diet—but we haven’t had insurance for awhile. we get back on insurance on insurance oct 1, thank goodness. my twins both had reflux and were on meds until they had been gluten free for about a year—and then they were able to go off the meds. I had extream reflux myself until I went GF. i would be willing to bet that if your baby has milk coming out of his nose that it probably burns like all get out. i’m surprised he isn’t fussy. As days go on, I see him getting more fussy ( he turned 4 weeks yesterday) sylvia had really bad reflux, but, she did not spit up very much the first couple of weeks–but she was a very fussy baby–and got fussier as time went on–and she also started to spit up more and more over time. we had to hold her almost 24 hours a day for about 2 months. if you are lying in bed and nursing your baby—and that is the only time he is getting stuffy, it sounds like it is probably being caused by the reflux—especially since you see milk coming out of his nose——i would want to treat the reflux if it were me—before he becomes really fussy. I go for the 1 month check up on Thursday. I think I am going to push the meds. I dont want a repeat of my middle child.
it would be pretty hard to get a strong willed 4 year old to not eat things he wants when you can’t give him a reason why. if you get him tested, and it is positive, you can (try) to explain to him all of the problems that he could end up with if he doesn’t stay gluten free. if it comes back negative, you can either do allergy testing to see if something else is causing his symptoms, or you can wait a few more years and test him for celiac again. by the way, what is happening that makes you susprct he has celiac? He had food allergies from the time he was born. He is in the 5th percentile for weight (both my kids are) he has the “buddah belly” He still has reflux, and I can tell he’s uncomfortable most of the time. He acts out at times, and I truly believe that it’s because he does not feel well. He has probablt never felt great, so he knows no different. He STILL has cradle cap at 4. He has very large “bulky” stools, and lots and lots of gas. He is also sick with some sort of URI, or ears every 2-3 weeks requiring antibiotics. He has been allergy tested twice and the first time he was positive for milk and eggs, and the second time he was negitive for everything. My oldest son, has the black eyes, extream gas, greenish stools (sometimes really soft) belly aches, and he is also in the 5th percentile. I brought up the weight thing on Friday (another sick visit for antibiotics) i asked him about pedisure. He recommended ice cream milk shakes every day for both of the kids to up the calories. I said I dont like to give them that much milk……and he told me to use another type. i dont know if i agree with that. all 3 of my girls had different symptoms–one of them actually didn’t even have any symptoms—except that she looked like an ethiopian child—but all of my kids are skinny, so i didn’t think too much of it—but i did have tonsils taken out of two of them because several people told me that as children they had been really skinny until they had their tonsils out–then they gained weight—the girls had large tonsils and swollen glands—so it seemed a reasonable thing to try.we have been able to reproduce almost everything gluten free that we ate with gluten. we make muffins,pancakes, cookies,cake, soft thick pizza crust, fruit and cheese danish, even frog eye salad and sweet rolls. if you’re still figuring things out, let me know if you want any tips. we hardly even use the gluten free cookbooks, we use our old betty crocker recipes–or any recipe we find and want to try. my twins have become quite good cooks since 9th grade when they were diagnosed—good thing since they are both getting married before christmas!!!My husband and i had a fight about the gluten thing yesrterday. I was tested a year ago, but negitive. I had been GF for 3 weeks prior to getting tested. We have no knowalagable Dr’s in the area that know what they are doing. I have a co worker that went to Italy to be diagnosed and treated. The Drs over here tell her she is negitive for celiac, but she has been GF for years.
We watched the Dr Oz show on gluten. My husband thinks it’s a “fad” and that i dont have an issue. He thinks that my issue is with pasta and bread (like him….) and that what he takes as feeling “gross” after he eats, i take as having my stomach hurt. I get blood in my stool and stuff when i eat gluten. He just doesnt get it and it really pisses me off. Because he can’t “see” an issue, that means its not there.September 18, 2011 at 9:33 pm #69066In reply to: Do you think this is reflux?
AnonymousInactivewe’ve had reflux and we have celiac. i’ll start with you’re middle son—-i think your doctor is an idiot to tell you to try an elimination diet. sorry for sounding so rude, but your son is old enough that he should most likely be producing Ttg antibodies. if you put your son on an elimination diet you could end up keeping him off of foods that he doesn’t need to be off of—that comes from dr. green, who is supposesd to be “THE” authority on celiac. the tests usually are not accurate in children under 3 years old because they don’t always produce the Ttg antibodies at that age–don’t know why. you need to make sure that the doc runs the right tests for celiac also. i have 3 girls with celiac disease and we have been doing gluten free for going on 6 years now. we were lucky enough to get in on a celiac study being done by the university of california,irvine—and they did not only celiac testing, but genetic testing on all of us—and it didn’t cost us anything. my husband and i and 8 of my 9 children all carry one of the main celiac genes—for some reason, the disease has only activated in the 3 girls so far—but i periodically have myself tested when i am having other blood work done—and i really should have everyone else periodically tested, too–but i don’t seem to get it done. we used to get the celiac girls’ blood tested every 6 months to see how well they were following the diet—but we haven’t had insurance for awhile. we get back on insurance on insurance oct 1, thank goodness. my twins both had reflux and were on meds until they had been gluten free for about a year—and then they were able to go off the meds. i would be willing to bet that if your baby has milk coming out of his nose that it probably burns like all get out. i’m surprised he isn’t fussy. sylvia had really bad reflux, but, she did not spit up very much the first couple of weeks–but she was a very fussy baby–and got fussier as time went on–and she also started to spit up more and more over time. we had to hold her almost 24 hours a day for about 2 months. if you are lying in bed and nursing your baby—and that is the only time he is getting stuffy, it sounds like it is probably being caused by the reflux—especially since you see milk coming out of his nose——i would want to treat the reflux if it were me—before he becomes really fussy.
it would be pretty hard to get a strong willed 4 year old to not eat things he wants when you can’t give him a reason why. if you get him tested, and it is positive, you can (try) to explain to him all of the problems that he could end up with if he doesn’t stay gluten free. if it comes back negative, you can either do allergy testing to see if something else is causing his symptoms, or you can wait a few more years and test him for celiac again. by the way, what is happening that makes you susprct he has celiac? all 3 of my girls had different symptoms–one of them actually didn’t even have any symptoms—except that she looked like an ethiopian child—but all of my kids are skinny, so i didn’t think too much of it—but i did have tonsils taken out of two of them because several people told me that as children they had been really skinny until they had their tonsils out–then they gained weight—the girls had large tonsils and swollen glands—so it seemed a reasonable thing to try.we have been able to reproduce almost everything gluten free that we ate with gluten. we make muffins,pancakes, cookies,cake, soft thick pizza crust, fruit and cheese danish, even frog eye salad and sweet rolls. if you’re still figuring things out, let me know if you want any tips. we hardly even use the gluten free cookbooks, we use our old betty crocker recipes–or any recipe we find and want to try. my twins have become quite good cooks since 9th grade when they were diagnosed—good thing since they are both getting married before christmas!!!September 18, 2011 at 7:40 am #69058Topic: Do you think this is reflux?
in forum HELP!!!AnonymousInactiveMy oldest son (now 6) was on Nutramagin from almost birth. We would lay him down and he would cry. He never required meds, and out grew it.
Then I had a preemie. He was miserable from the day he was born. I made the pedi send me to the GI, since we couldn’t do ANYTHING without crying in pain. We had severe silent reflux, but because he wasn’t “spitting”, my pediatrician didn’t want to do anything. He would only sleep for about 10 minutes at a time. Life was pretty miserable for EVERYONE. We couldn’t even put him in the car seat, because the angle just hurt his belly. I let him sleep in my bed from the day he was born. He had sleep apnea from the reflux. 4 years later he is still in my bed.About a year ago, we learned that I have Celiac, as well as my dad. I think my middle son has it, but they don’t want to test him yet. They wanted me to do an elimination diet with him, but how do you tell a strong willed junk food junkie at 4 who can’t reason that he can’t have what he wants? It’s a constant battle.Fast foward to about 2 weeks ago. I kept commenting on how well my newborn sleeps (was not used to that from the last child) I have an over supply of milk, as well as a forcefull let down. I use a sheild to help with the flow for him. He’s a great nurser, and has been since day one. He’s very gassy, but has been able to move the gas on his own. My family has commented that he is not a spitter like my past children. He has started to spit up every now and then, but I figured most babies spit up, and he didn’t seem upset, so I didn’t worry about it.Then he started with the congestion. Both my other kids have colds, so my pediatrician said it was just a cold, and to raise the crib bed (he sleeps in the rock n play chair thing on an incline anyway) and use saline and the bulb sucker. I’ve been doing that. He only gets congested at night. I started wondering if the air conditioner was blowing on him, so DH and I rearranged the bedroom last night, and switch sides of the bed. Now the air is not blowing on him. He slept better last night, only waking every 3 hours or so. At night I lay him down and nurse him. I was watching him this morning, and after each nursing he was stuffy and gassy. Then when he was trying to clear the snot, milk was coming out of his nose.My question is this : If he isn’t bothered by the spitting, but he has milk coming out of his nose, and he;s bothered by it, as well as the congestion, do I treat the reflux? My Pedi did mention that if he has heartburn to go with the spitting up, then we needed to medicated. How do I know if he has heartburn? My 4 year old knows to ask for a Tums. The baby can’tAnyone have anything similar?Thanks if your still reading -
AuthorSearch Results
-
Search Results
-
Topic: can GERD return?!
HI Everyone. I must admit it’s been a while since I’ve been on here but I’m so glad to see it’s still available. SO here’s my issue: DD was diagnosed with SR at 4 weeks when she started spitting up blood. We switched from one med to another until we finally settled on 20 mg of prilosec/day which took care of all of her symptoms. BY 9 months old we took her off meds and had a minor week or two of rebound but nothing ever since. She’s almost 15 months now, and the last two weeks she seems to be exhibiting symptoms again!!! At first I thought that her clingyness and constant wining were developmental and I didn’t think much of it. But now her sleep is being effected and last night was the worst. She did the typical screaming in her sleep and from start to finish it took me over 4 hrs to get her to pass out which is completely abnormal. I could hear her refluxing and it was constant. This isn’t happening every night, but maybe 2-3 times a week for the past two or three weeks. She’s gotten tons of teeth and they haven’t been a major issue so I don’t think it’s that. She tested negative for all food allergies back at 4 months of age, but we never tested celiacs.
Anyway, my question for all of you is:
can GERD return FT or is it just episodic due to stress, food, etc?
considering how long she went without symptoms and her age, should I be getting her tested for any other sort of problem?
Is it worth doing a celiacs test?
OK, thanks mamas I really appreciate it!!!
Topic: Do you think this is reflux?
My oldest son (now 6) was on Nutramagin from almost birth. We would lay him down and he would cry. He never required meds, and out grew it.
Then I had a preemie. He was miserable from the day he was born. I made the pedi send me to the GI, since we couldn’t do ANYTHING without crying in pain. We had severe silent reflux, but because he wasn’t “spitting”, my pediatrician didn’t want to do anything. He would only sleep for about 10 minutes at a time. Life was pretty miserable for EVERYONE. We couldn’t even put him in the car seat, because the angle just hurt his belly. I let him sleep in my bed from the day he was born. He had sleep apnea from the reflux. 4 years later he is still in my bed.About a year ago, we learned that I have Celiac, as well as my dad. I think my middle son has it, but they don’t want to test him yet. They wanted me to do an elimination diet with him, but how do you tell a strong willed junk food junkie at 4 who can’t reason that he can’t have what he wants? It’s a constant battle.Fast foward to about 2 weeks ago. I kept commenting on how well my newborn sleeps (was not used to that from the last child) I have an over supply of milk, as well as a forcefull let down. I use a sheild to help with the flow for him. He’s a great nurser, and has been since day one. He’s very gassy, but has been able to move the gas on his own. My family has commented that he is not a spitter like my past children. He has started to spit up every now and then, but I figured most babies spit up, and he didn’t seem upset, so I didn’t worry about it.Then he started with the congestion. Both my other kids have colds, so my pediatrician said it was just a cold, and to raise the crib bed (he sleeps in the rock n play chair thing on an incline anyway) and use saline and the bulb sucker. I’ve been doing that. He only gets congested at night. I started wondering if the air conditioner was blowing on him, so DH and I rearranged the bedroom last night, and switch sides of the bed. Now the air is not blowing on him. He slept better last night, only waking every 3 hours or so. At night I lay him down and nurse him. I was watching him this morning, and after each nursing he was stuffy and gassy. Then when he was trying to clear the snot, milk was coming out of his nose.My question is this : If he isn’t bothered by the spitting, but he has milk coming out of his nose, and he;s bothered by it, as well as the congestion, do I treat the reflux? My Pedi did mention that if he has heartburn to go with the spitting up, then we needed to medicated. How do I know if he has heartburn? My 4 year old knows to ask for a Tums. The baby can’tAnyone have anything similar?Thanks if your still reading