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 InfantReflux.Org Forums : Infant Reflux Support : Introduce Yourself!! |
 Topic: Groupie Intro( Topic Closed) |
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hellbennt
Admin Group 
Joined: 28 August 2003 Location: United States Online Status: Offline Posts: 13403 |
 Topic: Groupie IntroPosted: 06 February 2004 at 12:15am |
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hi & welcome! this is loooong my name is laura & my baby jonah is 6months old [at the time I first wrote this] & finally a happy baby! Right off the bat, I want to tell you to please go to a specialist (pediatric gastroenterologist)!! Just the fact that you've found this board means that your baby is in pain & you need help from a specialist! Looking for GI: http://www.infantreflux.org/forum/forum_posts.asp?TID=660 You probably are wondering WHY does my baby have reflux? For Jonah, it was an immature LES (lower esophageal sphincter). He was 'just born with it.' For others, it can come from mspi (milk soy protein intolerance). Severe protein intolerances result in eosinophilic disorders. See link below. Others might have reflux as a result of pyloric stenosis or a hiatal hernia. I'm sure there are more reasons, too... Here is the link to the 'MSPI/allergy & Related Issues Main Page:' http://www.infantreflux.org/forum/forum_posts.asp?TID=2697&PN=1&TPN=1 Ok, that being said: When i started on this board, there was a mom named michelle who posted a lot. She helped everyone and I feel she gave a lot to the board (to me!) at the time when I first surfed on in...she went through SO MUCH to get her little boy on the right dose of prilosec! Please find a moment later, after reading this, and come back to click here to learn from the members from the past; they won't come up in day to day searches (unless you intentionally are looking): http://www.infantreflux.org/forum/search_form.asp?USR=Michelle . From here, on the right hand side, you need to choose from the drop down menu 'last year' and 'older.' When you see her posts, look around at the other posts and even check out their posts to see what this place is all about...others posted, too, (i want to give credit to all the moms who posted here & helped me out- you know who you are
 !) during this time frame. When conducting a search: please try and go back, to learn from others who may not be currently active on the board.What I've found is:
*many babies seem to 'plateau' on zantac...it is very weight sensitive & needs to be adjusted w/ weight gain...so check your baby's dose... I have found that many pediatricians prescribe zantac & reglan 'just because.' Your baby might not even need reglan- you'll find the link below, to research for yourself, as you read on... Zantac dosing- my/other’s question (has axid dose too): http://www.infantreflux.org/forum/forum_posts.asp?TID=9539&PID=82914#82914
Tips about Zantac & Mylanta: http://www.infantreflux.org/forum/forum_posts.asp?TID=149&am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;KW=michelle
H2 blockers (Zantac/Pepcid/Axid/Tagament) work by blocking the primary signal receptors on the parietal cell and keep most of the signals to begin acid production from ever getting to the acid-producing proton pumps. The main two problems with H2 blockers are 1) they do not block all of the receptors and so the pumps can still be turned on and 2) infants generally develop a tolerance for these drugs very quickly and so they usually become inneffective within a couple of weeks. Still, they are safe drugs and they certainly serve a purpose. H2 blockers do not neutralize stomach acid.
Only antacids like Mylanta or Tums actually neutralize the acid.
Pepsid dosing: 8th post down: http://www.infantreflux.org/forum/forum_posts.asp?TID=9295&PN=2
Here's info about zantac (& dosing): http://www.infantreflux.org/forum/forum_posts.asp?TID=758
http://www.infantreflux.org/forum/forum_posts.asp?TID=836 Zantac dosing:http://www.infantreflux.org/forum/forum_posts.asp?TID=1000 *After Zantac (or Pepcid or Tagament, these are H2 blockers), our GERDlings usually 'move on' to a PPI (proton pump inhibitor) such as Prilosec or Prevacid (or nexium or protinix). *If your baby is prescribed a PPI (prilosec/prevacid/nexium), it can take a while to 'kick in.' It can take up to 2 weeks for the PPI to 'kick in', so in the meantime, many of our babies have continued w/ the zantac. The prilosec kicked in for Jonah on day 12. So, you'll probably want to [read: SHOULD] keep your baby on zantac until the PPI kicks in bcse otherwise, it's as if your baby isn't on any meds at all. I learned this the HARD WAY! PPI side effects & success!: http://www.infantreflux.org/forum/forum_posts.asp?TID=203&am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;KW=michelle *After being on the board for two years now [at the time of this edit], I can tell you that you should 'check' your baby's PPI dose, because oftentimes, it is NOT high enough to be effective!!!!
www.marci-kids.com is at the forefront of the research supporting/proving proper doses of PPIs for infants.
Treating GERD w/ PPIs: http://www.infantreflux.org/forum/forum_posts.asp?TID=6026&a mp;PN=1&TPN=1
Prevacid 101(scroll down to the last purple post Publications on PPI dosing: http://www.infantreflux.org/forum/forum_posts.asp?TID=2669&a mp;a mp;a mp;a mp;a mp;a mp;a mp;a mp;a mp;a mp;a mp;a mp;a mp;a mp;a mp;a mp;a mp;a mp;a mp;TPN=1 Here's about Prilosec doses: http://www.infantreflux.org/forum/forum_posts.asp?TID=154&am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;KW=michelle *After your baby is prescribed a PPI, you can wonder how you're going to administer it...[We love caracream For Prilosec (omeprazole): there's Zegerid: http://www.zegerid.com/ & there's more about Zegerid here, Treating GERD w/ PPIs: http://www.infantreflux.org/forum/forum_posts.asp?TID=6026&a mp;PN=1&TPN=1 Or, you can get it compounded by the pharmacy- see above link Treating GERD w/ PPIs to learn more about WHAT TO ASK FOR when getting PPIs compounded *There was much discussion as to the stability of the 'regularly' compounded PPIs (just made into a liquid suspension by the pharmacist, using flavors like grape, strawberry, cherry, etc.) See Treating GERD w/ PPIs post above & Prevacid 101 link. * Jonah had Sandifer Symptoms before he was on the right medication & dose. It's symptoms like back arching, stiffening a leg, twisting the head in one direction, & can also include seizure type episodes...i always use the symptoms as a barometer- as we got the meds figured out, the symptoms pretty much disappeared
 ...from: http://www.infantreflux.org/Forum/forum_posts.asp?TID=627&am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;PN=1 http://www.infantreflux.org/Forum/forum_posts.asp?TID=417&am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;KW=sandifer
*Please scroll through the following info, if breastfeeding doesn't pertain to you, as there's TONS MORE info following this topic Breastfeeding a reflux baby can be challenging, to say the least. Some, like my Jonah, comfort feed, bcse the milk soothes their poor throats. Others, associate feeding with pain & arch, writhe & wriggle & don't want to nurse *Maybe you have OAL, Overactive Letdown? about OAL (overactive letdown): Posts from this site: second post, in purple: http://www.infantreflux.org/forum/forum_posts.asp?TID=2852&a mp;a mp;PN=1&TPN=2 http://www.users.qwest.net/~fsdebra1/refluxoal.html about oal: http://www.kellymom.com/bf/supply/fast-letdown.html * I breastfeed & found that there's a breast feeding support group at yahoo where they are really into discussing diet: http://health.groups.yahoo.com/group/breastfeedingreflux/ & one of the moms from that group has her own page: http://www.users.qwest.net/~fsdebra1/ - she's the moderator of the group, so you might want to start there... *I did the elimination diet (more below)- this is to find out if there are any proteins being passed through your milk that are affecting your baby. The most common are milk and soy proteins. If your baby has an intolerance to these proteins it is referred to as 'mspi' (milk soy protein intolerance). *Here's about mspi and related issues: http://www.infantreflux.org/forum/forum_posts.asp?TID=2697&PN=1&TPN=1 *Elimination diet (for breastfeeding): http://www.askdrsears.com/html/4/T041800.asp - this is when you eliminate foods from your diet to distinguish what foods may be upsetting your baby. It is very difficult, but it made me feel better because I knew I had tried 'everything.' The most common 'triggers' are dairy (all dairy including 'hidden' dairy) & soy. Jonah was born w/ an immature valve (LES = Lower esophageal Sphinctor (sp?) & while I did find items in my diet that affected him (tomato products, eggplant & tuna- weird I know), my diet really wasn't an issue, on the whole. This diet can help you determine if your baby has MSPI (milk soy protein intolerance). Here is a discusion about the elimination diet- scroll through to read all about how others have done this: http://www.infantreflux.org/forum/forum_posts.asp?TID=2852&a mp;a mp;a mp;a mp;a mp;a mp;a mp;a mp;a mp;a mp;a mp;a mp;PN=1
http://www.users.qwest.net/~fsdebra1/wweelim.html all about elimination diet-what to eat & more!
how to reintroduce food from elim diet:(thanksTracy):http://allergyadvisor.com/Educational/December_2.htm Scroll down to ‘C’ orange/mustard box- it's the SECOND orange/mustard box)
a great breastfeeding resource site:http://www.kellymom.com/ there's a 'milk calculator' where you can figure out how many ounces of expresed milk your baby should be getting http://www.kellymom.com/bf/pumping/milkcalc.html#calculator here's about thickening feeds (I personally don't believe in it for breastfed babies, but please do your own research http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&a mp;a mp;a mp;a mp;a mp;a mp;a mp;a mp;a mp;a mp;a mp;a mp;a mp;a mp;a mp;a mp;a mp;a mp;a mp;db=PubMed&list_uids=3806288&dopt=Abstract http://www.infantreflux.org/forum/forum_posts.asp?TID=3546 here's about starting solids: http://www.kellymom.com/nutrition/solids/index.html ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ ~~~~~~~~~~~~ *Reglan is extremely controversial. It has worked for some. It is for DGE (delayed gastric emptying). Has your baby been tested for this? If not, then why is s/he on this drug? Here is some info so you can make an educated decision, along w/ your specialist: http://www.infantreflux.org/forum/search.asp?KW=reglan&S M=1&SI=TC&FM=0&OB=2*What Formula for my gerdling? An overview of available formulas: http://www.infantreflux.org/forum/forum_posts.asp?TID=4394&a mp;a mp;a mp;a mp;a mp;a mp;amp;PN=1&TPN=1 *Here's about thickening formula: http://www.infantreflux.org/forum/forum_posts.asp?TID=354&am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;KW=michelle *here's about thickening feeds: http://www.kellymom.com/babyconcerns/reflux.html *what if my baby is having feeding problems and won't eat? http://www.infantreflux.org/forum/forum_posts.asp?TID=4385 * I discovered babywearing! It helps to keep your baby upright, it makes them comfy so they can sleep & it gives you your arms back I discovered an adjustable cotton pouch that my husband even wears Jonah in, too. most folks prefer the fleece pouch, but it's too hot here in miami & we find the cotton pouch to be great! jonah actually sleeps if we pop him in the pouch & walk a few laps around the house. try www.KangarooKorner.com - tanya will answer any questions... I found a babywearing group at yahoo (http://groups.yahoo.com/group/babywearing/?yguid=56755932) & also www.thebabywearer.com and now i want even more carriers, now that i know the pouch works so well, lol. I also have a solerveil sling that is lightweight, dries fast & has SPF protection. I now wear Jonah in the shower & he LOVES IT !!! he FELL ASLEEP the 1st time i tried it!! my 'asian style' canvas back carrier is on it's way, whoohoo, can't wait! [I'm a fanatic
*Ok, What can I FEED my GERDling?? An overview of available formulas: http://www.infantreflux.org/forum/forum_posts.asp?TID=4394&a mp;a mp;a mp;a mp;a mp;a mp;amp;PN=1&TPN=1 What Formula for my gerdling? http://www.infantreflux.org/forum/forum_posts.asp?TID=2698&a mp;a mp;a mp;a mp;a mp;a mp;amp;amp;amp;amp;amp;amp;amp;amp;amp;PN=1&TPN=1 When/How do I Start Solids?: http://www.infantreflux.org/forum/forum_posts.asp?TID=2760&a mp;a mp;a mp;a mp;a mp;a mp;a mp;a mp;a mp;a mp;a mp;KW=solids Chart for sequence of introducing solids to the allergic child (GERDlings oftentimes seem to be just as 'sensitive' as 'allergic' babies): http://www.hallpublications.com/title2_sample2.html Finger foods: http://www.infantreflux.org/forum/forum_posts.asp?TID=1653 Toddler foods-mspi safe& otherwise: http://www.infantreflux.org/forum/forum_posts.asp?TID=2599&a mp;a mp;a mp;a mp;a mp;a mp;a mp;a mp;a mp;a mp;a mp;a mp;a mp;a mp;a mp;a mp;PN=1 'Safe' Fish chart: http://www.checnet.org/healthehouse/education/quicklist-deta il.asp?Main_ID=716 *Here's one of my posts: http://www.infantreflux.org/forum/forum_posts.asp?TID=417&am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;PN=2&TPN=2 Jonah is only on prevacid nowadays [when I wrote this], w/ zantac on an 'as needed' basis. He is doing GREAT. This site has really helped me & I hope I can return the favor! It does get better, really!! If you have specific questions, please post them in the appropriate Forums, not here per se. I'm addicted to this site, so i'll see them ~Laura ps: please put your name & your GERDling's name, d.o.b., medicines and formula/breastfeeding in your signatures- it's so hard to keep track of all these little ones! To feel better read this and this: http://www.infantreflux.org/forum/forum_posts.asp?TID=563&am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;PN=1 and all the other posts in the hip hip hooray forum... HERE'S A BIT MORE (from a post i wrote april 9, 2004): silent reflux is when they don't spit up, the acid comes up & they swallow it back down. it DOES get better, REALLY. I know you can't beieve it, but it's true! You WILL GET SLEEP!!! We go to a wonderful specialist, who supports my breastfeeding, & I read everything i could here & then i told the dr. what i wanted- for example when jonah was on prilosec, i knew the dose to ask for because i knew about sandifer symptoms & i used them to monitor how effective the prilosec was. And then when jonah was on the max dose for his weight, i freaked out because we were going to have to try & switch to prevacid & i didn't want another change, another med...the prilosec had seemed so promising! but this site helped me so much & we switched & it took a while to get to the right dose & it also took other meds (carafate, zantac), but finally we're at THE END it just kept getting better & better, the shrieking lessened, the sleeping got better, EVERYTHING. I have a HAPPY BABY it'll get better, just hang in there. push your specialist. read all you can. ask us all questions... ~laura Jonah’s getting off the meds: http://www.infantreflux.org/forum/forum_posts.asp?TID=2057&a mp;a mp;a mp;a mp;a mp;a mp;a mp;a mp;a mp;a mp;a mp;a mp;a mp;a mp;a mp;a mp;a mp;a mp;a mp;a mp;PN=1&TPN=1 MORE LINKS I FIND I GIVE OUT: Going to the Top (fighting insurance & more): http://www.infantreflux.org/forum/forum_posts.asp?TID=2607&a mp;a mp;a mp;a mp;a mp;a mp;a mp;a mp;a mp;a mp;a mp;a mp;a mp;a mp;a mp;a mp;a mp;a mp;a mp;KW=going About faxing the doctor (& more): http://www.infantreflux.org/forum/forum_posts.asp?TID=2841&a mp;a mp;a mp;a mp;a mp;TPN=1 Website for pictures of our GERDlings (thanks Janice Importance of routine: http://www.infantreflux.org/forum/forum_posts.asp?TID=2802&a mp;a mp;a mp;a mp;a mp;PN=1&TPN=1 Reflux & ear infections: http://www.infantreflux.org/forum/forum_posts.asp?TID=2310 Reflux-what I have learned: http://www.infantreflux.org/forum/forum_posts.asp?TID=3275 michelle’s post about pushing for the right dr: http://www.infantreflux.org/forum/forum_posts.asp?TID=1002 protein sensitivity: http://www.infantreflux.org/forum/forum_posts.asp?TID=89& ; ; ; ; ; ; ; ; ; ; ; ; ; ; ; ; ; ; ; ; ; ;PN=17 Misc links collected: http://www.infantreflux.org/forum/forum_posts.asp?TID=2608 Procedures: http://www.infantreflux.org/forum/forum_topics.asp?FID=10&am p;am p;am p;am p;PN=1 Ph Probe http://www.infantreflux.org/forum/forum_posts.asp?TID=4651&a mp;a mp;a mp;a mp;PN=1&TPN=1
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naps vs. nighttime http://www.infantreflux.org/forum/forum_posts.asp?TID=82& ; ; ; ; ; ; ; ; ; ; ; ; ; ; ; ; ; ; ; ; ; ; ;PN=3 Reflexes? Startles easily, JOLTS awake http://www.infantreflux.org/forum/forum_posts.asp?TID=93& ; ; ; ; ; ; ; ; ; ; ; ; ; ; ; ; ; ; ; ; ; ; ;KW=startle ezzo/babywise (YICK is my opinion): http://www.infantreflux.org/forum/forum_posts.asp?TID=1494&a mp;a mp;a mp;a mp;a mp;a mp;a mp;a mp;a mp;a mp;a mp;a mp;a mp;a mp;a mp;a mp;a mp;a mp;a mp;a mp;a mp;a mp;KW=ezzo
Silent Refluxer to 'Spitter': http://www.infantreflux.org/forum/forum_posts.asp?TID=145&am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;KW=missjess456 milk protein/dairy allergies: http://www.infantreflux.org/forum/forum_posts.asp?TID=391&am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;PN=6 Edited by hellbennt - 30 August 2008 at 10:18pm |
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~laura~
Jonah 7/03:GERDfree@12mos! Silent Reflux@birth(apnea episodes/NICU);Past Sandifer Symptoms, breastfed->15mos Ari 7/06 REFLUX FREE, so miracles do happen! |
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Amber
Groupie 
Joined: 03 December 2003 Location: United States Online Status: Offline Posts: 943 |
Posted: 06 February 2004 at 8:09am |
Way to go Laura! A round of applause! Your post is going to be very helpful to a lot of people!You've brought back a lot of info for us, Thanks!
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Amber-27 Brock-32
Alyssa Rhiannon 11/15/99 IBS/chronic constipation Aidan Quinn 10/10/03 GERD/Trachea/Laryngomalacia/OFF Prevacid!!/ 5y verbal apraxia,oral aversions, ST & OT,SPD Fostoria, Oh |
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kwondra
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Joined: 13 February 2004 Location: United States Online Status: Offline Posts: 19 |
Posted: 15 February 2004 at 2:32pm |
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OH MY GOODNESS, Thank you for this post. I have been going CRAZY with my DD's reflux. We have another doctor's appointment on Tuesday. I am going to run off each and every one of these links, highlight the parts that interest me, and hopefully get some help for my daughter so that she's more comfortable. THANK YOU THANK YOU THANK YOU!!!! Kris and Meghan 12-12 |
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hellbennt
Admin Group
Joined: 28 August 2003 Location: United States Online Status: Offline Posts: 13403 |
Posted: 16 February 2004 at 11:41pm |
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~laura~
Jonah 7/03:GERDfree@12mos! Silent Reflux@birth(apnea episodes/NICU);Past Sandifer Symptoms, breastfed->15mos Ari 7/06 REFLUX FREE, so miracles do happen! |
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Col71
Newbie
Joined: 27 February 2004 Location: United States Online Status: Offline Posts: 120 |
Posted: 27 February 2004 at 4:08pm |
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Thank you, Laura. Colleen and Ryan (12/10/03 - a 33 weeker) |
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aliciat227
Newbie
Joined: 11 February 2004 Online Status: Offline Posts: 16 |
Posted: 27 February 2004 at 5:48pm |
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Thanks so much for the info, I am much more informed now. I do not feel so alone!
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Mother of Marisa, DOB 12/23/03,reflux, on Previcid
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cclem
Groupie
Joined: 16 August 2003 Location: United States Online Status: Offline Posts: 673 |
Posted: 29 February 2004 at 1:17am |
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Laura! You are so good at finding those posts!
 Thanks for the help!
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Cindy Scott
Shelbea 3/28/03 Marshall 3/30/98 Justin 10/1/96 Windom, TX My Email http://hometown.aol.com/cclem722/myhomepage/profile.html |
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hellbennt
Admin Group
Joined: 28 August 2003 Location: United States Online Status: Offline Posts: 13403 |
Posted: 29 February 2004 at 12:15pm |
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You all are MORE than welcome! I really really get excited by & enjoy sharing information! Sometimes i feel my posts are purely informational, w/o a lot of emotional support, so from time to time i really try & post an 'emotional' or 'supportive' post...my intention isn't to come across as curt- i just want folks to be able to find what they're looking for! ~laura |
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~laura~
Jonah 7/03:GERDfree@12mos! Silent Reflux@birth(apnea episodes/NICU);Past Sandifer Symptoms, breastfed->15mos Ari 7/06 REFLUX FREE, so miracles do happen! |
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kevieb
Senior Member 
Joined: 02 December 2003 Location: United States Online Status: Offline Posts: 3539 |
Posted: 29 February 2004 at 2:05pm |
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i was laying in bed last night thinking about you laura. it dawned on me that you pretty much have a handle on jonah's reflux, but you just keep posting to help the rest of us. THANK YOU SO MUCH!!!!!
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christine
leif 83 daisy 85 ian 89 kassandra 91 reflux celiac tianna 91 reflux celiac molly 95 celiac elliot 97 samantha 99 sylvia 10/6/03 fundoplication hiatal hernia repair 7/29/04 |
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hellbennt
Admin Group
Joined: 28 August 2003 Location: United States Online Status: Offline Posts: 13403 |
Posted: 01 March 2004 at 9:34am |
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christine, i do it because i know how overwhelming it can be when you first 'find' this board! it's usually because you're at your wits end! anyway, it's my hope that all parents get to a specialist (or 2 or 3 or however many it may take to get someone who understands what the heck is going on!) to get the reflux 'under control' so that the babies aren't in pain!!! i thank all of YOU ~laura |
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~laura~
Jonah 7/03:GERDfree@12mos! Silent Reflux@birth(apnea episodes/NICU);Past Sandifer Symptoms, breastfed->15mos Ari 7/06 REFLUX FREE, so miracles do happen! |
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. 
! 9 months (the 17th!) later (valve must be maturing bcse my little piggy likes to eat everything i give him w/o any reflux and also he's been on the same prevacid dose for months now, not like before when we'd have to increase it w/ almost every couple of pounds weight gain)!!! so see, it doesn't have to be a whole year! 
