Posted By Posting
Feb 14, 2007
ssh
My 2 year old needs an endoscopy...
I have never posted her and actually just found this site. My DD was dx at about 6 weeks old. She was born 5.5 weeks early and had symptoms from the start. She has been on Zantac, Prilosec and now Prevacid since about 9 months. We struggled alot the first 9 months before seeing a specialist. She has been doing well, except for during growth spurts and weight gains where we have had to increase her dose. My GI dr has had my try several times over the past year to wean her off the meds. It never worked. Finally he asked in Dec for us to go cold turkey. We stopped meds last Thursday. Friday she seemed ok, actually better than I expected, but Sat she was basically refusing to eat and drinking very little... Sat afternoon I had to go out and left her with a sitter while she napped (usually sleep disturbances have been a major indicator). She woke up and threw up 3 times. The sitter called me and I rushed home, and she complained her tummy hurt. I gave her the prevacid and within an hour she was signficantly better and wanted to play. She even asked for food b/c she was hungry. So now she's back on the meds. We have an appt this Friday. Our dr mentioned doing an endoscopy if she doesn't do well when we take her off the meds... so obviously that will be needed. What other questions should I ask? As much as I know about her symptoms and response to meds I have not researched reflux enough to know what they might find, and what our next steps might be. Any info would be appreciated. I was concerned about her having the endoscopy but now I think it will hopefully provide some answers. Just not sure what our next steps will be.
Feb 14, 2007
missmuffet
Hi there. I am new to this site & forum too. I actually live in NZ and have learnt alot from this NZ site forum on reflux/GERD: http://www2.everybody.co.nz/forum/ubbthreads.php?ubb=postlist&Board=6&page=1 (You can learn alot just be reading the posts (also www.cryingoverspiltmilk.co.nz is an excellent website and among the various info on there is info about the different meds that are available and the dosage amounts per body weight (JUST A GUIDE though - one size doesn't fit all with reflux kids). Re: the everybody site forum, if you want to ask questions though you will have to sign up on the bulletin board (v easy) I don't think it's a good idea going cold turkey with meds - weaning is better. She clearly needs some meds still. Over here reflux babies/kids use different meds (some use a combination) but it seems that Losec (omeprazole - though may have another name in your country) is used commonly here (by boy is only on this). All trial and error really with the meds (which type then which dose). Have you read up much about food intolerances/allergies as that can be a big factor in ongoing reflux (there is more info on this on the cryingoverspiltmilk site). About one-third of kids with reflux are allergic or have a problem with the protein in cows milk. That is a big percentage. Another big food intolerance with reflux kids has found to be gluten. As well as these 2 sites I mention, another site that is run by a NZ paedatric gastroenterologist/allergist where you can find out more about gluten is: www.thefooddoctor.co.nz He has info on their about what the appropriate blood tests are to test this, but from further recent reading on this it appears that blood tests are not always accurate, esp if you are breastfeeding your DD. The most conclusive way of testing for gluten problems appears to be stool testing, done by www.enterolab.com (they can also test for other things such as casein sensitivity (one of the proteins in cows milk) but expensive (esp for us kiwi's!). To work out food intolerances, food elimination trials are the next best thing (if you can't afford the stool testing done via enterolab). But will be confusing if you are still bfeeding your girl (what you eat/drink will affect her). Don't know what it's like in the States (is this a U.S. website) but food intolerances or allergies (btw food intolerances rather than food allergies are harder to work out though) are a big factor for reflux babies/kids here. But a lot of doctors here seem to not know alot about it and also food issues. It seems here that the parents rather (incl myself) have found more info about reflux and it's causes thru the internet & forums such as this, rather than thru their doctors. My boy is under a specialist (but he is not that great either). I think we are finally getting somewhere though. He is on losec but through a food elimination trial we did with gluten, we are pretty sure he has a problem with gluten (doing a 2nd food challenge shortly). Secondly he may have a problem with cows milk (he is dairy free also currently) but the results of experimenting with that are not clear - I think if he does have a problem with cows milk, it is not a major one). ALSO he has greatly improved since being on a PROBIOTIC. I suspect his stomach acid being low (from the losec med) was disturbing the balance of gut bacteria (so he didn't have enough good bacteria in there). He has not had any tests done so far (apart from the blood tests for gluten & coeliac disease, also iron levels - re: iron levels it is very common for reflux kids to be low in iron). We will do another food challenge with the gluten next, (if he reacts badly we'll have to keep him gluten free), then next step is to add back in cows milk & see what happens. Assuming he is still showing reflux symptoms we will look into whether he needs some further testing done (e.g. endoscopy). Though I am now interested in seeing someone about possible nerve damage to my son's neck/spine being the cause/partial cause of his reflux. P.S. There is info on the cryingoverspiltmilk site on the tests available including endoscopy. Maybe this test will give you some answers for your girl, even if just to eliminate possibilities. Sorry for the long post. I don't think I will have time to do long posts on this site as I already spend a considerable amount of my time on the everybody site and on the internet in general, having being doing research on reflux for well over a year though. I feel l am all 'researched out' now. Had enough, like all you other reflux parents. It seems with ongoing reflux there are no easy solutions, there is not enough known about this including food issues by the medical community (though specialists are better, ones that specialise in gastro conditions and food allergies/intolerances, immunologists, particularly paedatric specialists). That is why it is so frustrating for us parents. Thank goodness for excellent website such as this and the forums. I hope the endoscopy will shed some light on your daughter's problem and I hope I have give you some info that may be useful. BEST OF LUCK.
Feb 14, 2007
missmuffet
sorry one of the websites I mentioned - is is supposed to be: www.thefooddoctor.org
Feb 15, 2007
lynnwb
mother of Piper, 3 years old recently re-diagnosed with reflux, Ross 3 years old GER since 4 weeks old, delayed gastric emptying (grown out of) and milk allergy/soy intolerance, Charlotte 2 months old reflux and possible milk allergy
An endoscopy is a test where they take a scope and look at your daughters esophagus, stomach and small intestine. She will be asleep while they do this and won't feel a thing. She may have a bit of a sore throat afterward, but really not much else. They will be looking for any ulcerations or abnormalities that could point to something other than reflux. In addition, they may want to take some biopsies while they are there. These can be tested for any number of things, including food allergies. My son had an endoscopy done in Sept. and while I was really nervous about it, the whole procedure was much easier than I imagined it. He was up and running around in no time! My best advice is to talk it over thoroughly with your doctor and don't be afraid to ask questions. Things you may want to consider are, what will he/she be looking for exactly? Will you be able to stay with your daughter while they give her the anesthia? Will you be able to be there when she wakes up? How long will the test take? How long will the results take? I also found that the nurses at the hospital were wonderful for talking to and getting information from. Good luck, you're doing all the right things!
Feb 15, 2007
ssh
Thanks...
Thanks Missmuffet and Lynn. As far as possible allergies to milk or gluten she has not been tested. I really didn't think it was milk because she has been drinking formula-based milk, now whole milk as well as yogurt, cheese, ice cream etc for a long time, but you know it's always possible! She is fairly well controlled with meds, so she is definitely not as severe as some kids I have read about here, but bad enough that we are not able to reduce her meds at all. I do think the endoscopy will help give us more information and determine if there are other issues. I really thought she would be one of the typical kids that outgrows it, but I guess not! Thank you both for your support and info. The other board I frequent has a GERD section but it is all moms with newborns looking for advice and not as much info for older children. I have already read about all of the possible tests they may run and will bring a list of questions with me tomorrow. Like I said, I was really apprehensive about doing this test and having her put out uneccessarily, but know I feel it is needed and we will hopefully get more info as a result. It's good to know they can do a biopsy while they are in there and test for allergies, too. One less test to do. I have a friend whose son had major issues switching over to solids and he was refluxing badly, but it turned out he has major food allergies. He is seeing a doctor in our same practice and now sees a nutritionist there, so I know my daughter is in good hands. I will let you know how it goes and will check out the other web sites you mentioned. Thanks again!
Check with your
doctor first!