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Dec 01, 2008
isobel'smamma
Sara, Mom to Isobel 10/01/08 Dx Silent reflux @ 6 wks. Prevacid 22.5mg split in 2 doses. Pepcid .5ml twice a day. Diagnostically confirmed milk protein, egg and cat allergy. Suspected corn, pea and squash allergy. Trialed Alimentum and Elecare without success, currently on Isomil Advance RTF with moderate success. Barium Swallow and UGI 3/08 Pondering a ph probe and endoscopy.
New
Hello all... I've been scouring the boards for information for a few days now - you all are a wealth and I'm thankful that you have collectively put yourselves out there and shared your stories. My dd was dx with silent reflux 2 wks ago...we started on zantac with absolutely no effect and now are on Prevacid for the last 3 days. She has lovely mucousy stinky stools now, but so far no real effect on her pain level. We also bought (for three arms and two legs) an Amby bed. Anyone have any experience with those? DH and I have so far been unable to achieve a helpful angle. Any suggestions on that? I haven't seen any discussion on the boards about pain control for our LOs - I mean you can only give Mylanta so many times a day! How do you all manage it? I wear Isobel a lot and at every sleep I swaddle her tight, play white noise, etc. and that seems to help a bit but I can't even change her diaper without causing a reflux episode. We go back to the GI tomorrow when I intend to ask him just how in the H*LL I'm supposed to get all those Solutab granules into a 2 month old.
Dec 01, 2008
maggiemom
Maggie is now 3 years old and reflux free (knock on wood). I still check in some to see how everybody is doing :) Hugs to all!
Hi! Welcome! One thing you will definitely get here is understanding and tips that only a mom can give :)

Maggie was diagnosed at 7wks. She was also on zantac. She was one of the few that did well with it so I never used prevacid. I can tell you from what I've learned here that prevacid can take as much as a couple weeks to be fully effective. You might ask if you can give the zantac with prevacid until the prev takes effect.

As far as the bed angle, it helped Maggie but the magic was getting her med dosage right, her angle, and I figured out that she didn't tolerate me drinking milk (she was bfed). With the mucousy poops, I would almost bet that your lo is mspi (milk/soy protein intolerant). Is she formula fed? If so what kind do you use? It can sometimes take a few formula changes along with med changes before you finally find the right combination for your baby.

Hugs!

Dec 01, 2008
zack'smom
Zack born 09/28/07 @ 31 weeks. Dx silent reflux @ 6 mo. Now not so silent. Switched to Elecare @ 9 mo. On Prevacid 15mg 1x daily. Looking to stop the puke and gain some lbs.
Puke stopped about 24 months and he's learning to eat...very slowly.
Still on prevacid and periactin.
I'm so sorry you have to deal with this, but you will find an amazing wealth of information in these women and children. As for the Prevacid..I dissolve it in the smallest amount of water possible, then syringe it in using a NON bulb syringe (the one that comes with Children's Motrin is perfect). I squirt in in while Z is still sleepy...deep into his cheek pocket. Sometimes he spits a lil out, but most of it gets in there. GOOD LUCK!
Dec 01, 2008
maggiemom
Maggie is now 3 years old and reflux free (knock on wood). I still check in some to see how everybody is doing :) Hugs to all!
Ok, I just went to your page and see that you bfeed. :) It can be difficult to figure out the triggers for your little one. With Mags all I had to cut out were milk and yogurt. Some moms have to cut out anything that has any milk or soy in it, all the way down to lunch meats. It is definitely possible, you just have to figure out what works for you.

Did you see the page on this site that lists trigger foods? It's very helpful. Also I have a link to a site that lists pH levels of foods. There's foods that are acidic (low ph) that I wouldn't have thought of.

http://www.cfsan.fda.gov/~comm/lacf-phs.html

Dec 01, 2008
isobel'smamma
Sara, Mom to Isobel 10/01/08 Dx Silent reflux @ 6 wks. Prevacid 22.5mg split in 2 doses. Pepcid .5ml twice a day. Diagnostically confirmed milk protein, egg and cat allergy. Suspected corn, pea and squash allergy. Trialed Alimentum and Elecare without success, currently on Isomil Advance RTF with moderate success. Barium Swallow and UGI 3/08 Pondering a ph probe and endoscopy.
Thanks all.... Yes, I am breastfeeding. The GI said that she wasn't allergic to milk proteins based only on the fact that there's no blood in her stool (and said not to worry about my diet which, of course, I am)... however I understand that there's a difference between intolerant and allergic. Does anyone have any info on a vegetarian elimination diet? I'm having the hardest time dealing with my lo being in pain! And honestly if one more person tells me, "Honey, babies cry, that's what they do" I think I'll explode. Yar.
Dec 01, 2008
maggiemom
Maggie is now 3 years old and reflux free (knock on wood). I still check in some to see how everybody is doing :) Hugs to all!
You will learn that people don't know how to "shut it" :)

Did the GI test her stool for blood or are they just going on visible blood? I know that some moms here have had the stool tested bc sometimes it's not visible. And you're right...it could be an intolerance not an allergy. I learned that allergies usually come out in immune problems (like rashes) and intolerances come out in digestive problems (like mucousy poop). Mags was so runny that we couldn't change her diaper without worrying about it running out like snot (sorry). Once I cut out milk and yogurt, she was fine.

Dec 01, 2008
b-girl
Mom to Jasmine aka: Jazz 01/24/2007
Dx with silent reflux at 8 months
FPIES, DGE, MSPI. Recently diagnosed with EC (Eosin. colitis and now Primary immune deficiency disease.
Also mom to Nathan. born Jan.20th, 2009, MPI . so far dx with reflux and has an extremely sensitibe GI system. Also dx with primary immune deficiency disease.
Hi, welcome. It's painful to watch your baby go thru hell. We are still trying to cope even now. Hopefully you'll get lots of helpful tips and support and find something that works for you.

Jasmine didn't have blood in her stool either, but once I cut out all dairy and soy, she showed a bit of improvement. I breastfed until 18 months, and I can honestly say that despite my elimination diet, she did do even better off of breastmilk. Hopefully that won't be your case. I guess you just have to go with yor gut and try different things out for yourself...which can be difficult when your dealing with something like reflux... HUGS

Dec 01, 2008
mom2adriane&morgan
Adriane Reese 05/16/07; seemingly healthy when born; diagnosed with MSPI, severe Reflux, Apnea, Ashtma, Epilepsy, and severe food allergies(rice, corn, milk, soy, eggs, oats, wheat, beef, chicken, squash, pumpkin, avocado, etc.);On apnea monitor, seems to be tolerating RCF w/carbohydrate mixed in; on Zyrtec, Xopenex, Prevacid
I'm sorry you are having such a hard time. I agree with the allergy thing. I had to cut out so much stuff the doc finally told me that it was detrimental to my health to try to bf. We had to go to neocate formula through an NG tube once we figured everything out. Now that she is 18 months and we have gotten allergy tested we figured out why. She has 9 anaphylactic food allergies, and those are just the ones we know about. I never "saw" blood in Adriane's stools just mucous and terrible discomfort, screaming constantly.

If she is on the solutab granules that is hard to do with a baby that age. If she has a sensitive gag reflex, which A did, they will have a hard time swallowing. You might see if you can do the solutabs. I think all the pp had some good ideas and info. Sorry, I don't have any ideas for elimination diet. I hope something gives you a break eventually. -Amanda

Dec 01, 2008
mollybeth
Cooper was born 12/19/07. Birth weight: 7lbs10oz. Weight as of 2/11: 8lbs9oz. 6/23: 14lbs12oz! Struggling again 12mo: 18lbs. Breast Fed exclusively, on strict elimination diet until Dec 08. MSPI as well as other food intolerances Diagnosed w/ GER at 5 days following barium swallow. Choking with apnea spells. Ftt. dx w/ Laryngomalacia following brochoscopy 1/29. Aspiration. apnea monitor until 5mo. pH probe 1/29 showed severe reflux. Sandifers Syndrome. lbrady and tackycardia. echo and EKG 2/18: Came back normal! Swallow study 2/29: some NG reflux. Unexplained seizure 4/1. Negative CF sweat test 4/4! EGD 11/19: reflux damage in esophagus. pH probe 11/19, reflux improved. Safe foods: pears, apples, peas, rice, small amounts of chicken, potatoes, and carrots.
Currently drinking Elecare vanilla 30cal/oz and breastmilk.
Meds: Nexium 10mg 2x daily. Carafate as needed, miralaxx as needed, probiotics daily
Wow. Reading your post took me back. Diaper changes were a nightmare for us. It was the first time Cooper ever stopped breathing and went blue on me was during a diaper change. I would try to elevate with a pillow even during diaper changes. The best luck we had with sleeping was to sleep in a recliner with him on my chest. We did that for the first few months until the apnea subsided. He cried alot and it was very hard. The 2 best things I ever did, was the elimination diet and the chiropractor. I was not encouraged by my pedi to do the elimination diet, and told 10 diapers a day that smelled foul and were full of mucus "were normal breastfed diapers" b/c there was no blood in the stool. apprizingly, within days of starting a very strict elimination diet the diarrhea ceased. We now have a new pedi:) I have now been on the diet for 7 months and wouldn't go back for anything. I followed dr sears guidelines as found on his website. I am still of of dairy, soy, wheat, eggs, treenuts, peanuts, beef, tomatoes, citrus, spicy, gassy veggies. My concern for you would be in how you would get your protein. Perhaps you could just start by taking out all dairy and soy and you could keep you beans and nuts and eggs for the protein. I wish I had more to add on that. Cooper started prevacid at 5w, but it wasn't affective until about 3 mo or so b/c that is when he was able to get it down. I really hope this helped. Hugs those early months are so though.
Dec 01, 2008
mom2halleyann
Donnessa, mom to Halley born 3/10/07
Reflux (mostly) resolved at 14 months
and Addison born 8/17/09. Currently exclusively bf and on 7.5mg Prevacid
Hi, I wanted to jump in here. I agree with the others that the stinky mucous is not a good sign...she is probably intolerant (hopefully not allergic) to something you are eating.

My dd started Prevacid at 6 weeks of age. What worked for us when she was so little was to add just a few drops of water onto the tab until it turned into a paste. I would then either let her suck it off my finger or wipe it on her upper gums. When she gets a little older, you can try giving it to her on a baby spoon or you can pop the tab in the side of her mouth and hold it there until it dissolves (we started doing that at 4 months, but you could probably start sooner). I'm not sure if anyone told you, but make sure you give the Prevacid on an empty stomach at least 30 minutes before a meal. Also, if you're using Mylanta a lot, don't use it within 4 hours of the Prevacid dose. It will get better, I promise, but this first part REALLY sucks...hang in there!

Dec 02, 2008
blueleopard
Pictured: G'mom w/3 kids. I'm mom to 1 angel Melissa (dec'd 11/92 - hypoplastic left-heart syn.)
2 healthy daughters (knock wood) Cory (16), Kim (11) & Eric (4) diagnosed with e.e. (scoped 8/08), GERD & severe food/seasonal allergies, asthma. Cried non-stop first 17 mths. of life Found out he is allergic to cow's milk, soy, eggs, and peanuts. Takes Prevacid, Neocate One Plus & Flovent.
Hi & welcome. Just wanted to add that my son was horribly allergic to milk (& soy) but we never saw blood in his stool. We did have vomiting and diarrehea. If there are any allergy/asthma issues in your families, just be extra careful, because the reflux could be aggrevated by foods. Ellen
Dec 02, 2008
isobel'smamma
Sara, Mom to Isobel 10/01/08 Dx Silent reflux @ 6 wks. Prevacid 22.5mg split in 2 doses. Pepcid .5ml twice a day. Diagnostically confirmed milk protein, egg and cat allergy. Suspected corn, pea and squash allergy. Trialed Alimentum and Elecare without success, currently on Isomil Advance RTF with moderate success. Barium Swallow and UGI 3/08 Pondering a ph probe and endoscopy.
Thanks
Thanks for the warm welcome. I'm so lucky that Isobel doesn't have a severe case. Reading all of your stories puts it in perspective for me. Went back to the GI today... he never told me to continue the Zantac while getting her on the Prevacid.... he assumed I knew. I guess I'll learn to ask more questions. He poo-poohed the idea of an elimination diet but I think I'm going to do it anyway. Can't hurt and I might even lose some weight (optimism, yes!)! Thank you SO much for the link to acidic foods! Does anyone have a link to any studies about transfer into breastmilk? Acidity of breastmilk? I've googled but come up with odd results. Netherlands odd. Again - thanks for the responses and warm welcome!
Feb 19, 2009
johnniesnewmommy
Help where to start?
Hi My 7 month old just had an upper GI done today and with 1/2 an ounce of solution he aspirated into his lungs. He has been sick since he was 6 wks old and no one could figure out why. Hospitalized twice with pneumonia and a third time when his lungs collapsed. He is only in the 7th percentile for weight for his age and is always croupy. Now that I know what is causing this- I need to know what to do to help him. He has already been on reflux precautions for 4 months. Thickening formula- switched to Nutramigen, sitting up and mostly sleeping up. He crawls to the bottom of the bed so he is flat. He also takes zantac and uses albuterol for the wheezing. He is always constipated. Help where do I start?
Check with your
doctor first!