Posted By Posting
Jun 23, 2009
kris10
Kristen
Twin girls born 1/9/09, Kayla (my really bad refluxer) and Kamryn (my semi-bad refluxer)
Newbie with questions...
Hi everyone! I'm new, so I'll apologize now for the length of this post!! I have twin girls who were born 2 months prematurely and are now 5.5 months old. One is healthy and fine with minor reflux issues and is on Prevacid. She now weighs almost 14 lbs. The other is a different story. She has been diagnosed with Failure to Thrive and spent her first four months of life in THREE different NICUs. All the tests they ran were inconclusive for reflux, even though ALL the doctors except one pretty much said, she had reflux and a possible milk protein allergy. We eventually got her home on Nutramigen with Simply Thick and Prevacid. For the next six weeks she seemed to be doing so well, she gained over 2 lbs in six weeks and now seems to be hitting a wall and regressing. About 10 days ago, the Dr upped her Prevacid dosage as she seemed to be refluxing again. That helped a little, but then about a week ago, she started running a fever. The Pedi said her white blood cells were elevated, so she gave her an antibiotic shot and sent her home on Suprex antibiotics. That's when it got terrible. For the last four days, she has been screaming/writhing in pain. She claws at my shirt, screaming and I can't calm her down. If I try to feed her it's worse, she refuses the bottle, even though I know she's hungry and practically flies out of my arms pushing and screaming in pain. I ended up giving her tylenol to help with the pain, and she passes out from exhaustion...I then feed her while she's almost completely asleep and the tylenol has started to work. This repeats almost every six hours or so. The Pedi said to stop the antibiotic and see how she does, that was yesterday...so we are waiting. So now my questions. We have an appointment with a new GI on Thursday and I'm wondering if you all have suggestions on questions I should ask her and things I should have my little one tested or considered for. It's breaking my heart watching this happen to her and she is so skinny still that she only looks like a newborn, while her identical twin looks three months older than her. She was gaining about an oz of weight a day, but that has slowed and even though she was growing, she wasn't getting any fatter or healthier looking. I'm frustrated because her current GI says "she's just fussy" and I'm convinced now more than ever that something is wrong and she's fussy because she's in pain! I've never seen her claw at me like this, her eyes are filled with the most immense pain I've ever seen begging me to help her and it is breaking my heart that I can't. I think tonight my husband is going to film one of her episodes and I will take it with me to her new Dr and beg for help. Sorry this is so long...I appreciate your reading this and offering any help or advice you can! Even just having some support is helpful! Kristen
Jun 23, 2009
molson1525
Mary & Nicholas 7-17-03 (non-refluxer)allergies, asthma on Singulair and Flovent & Aidan 1-28-07(my refluxer)Nissen Fundoplication on June 20, 2008, FTT, MSPI, DGE, ear tubes, allergies and severe GERD now currently taking just Prevacid and drinking Elecare Vanilla 1+.
Wow I don't know how anyone does reflux with twins so you are amazing! My son's reflux was horrible everytime he was put on antibiotics. It made his reflux flare for at least 2 weeks after the antibiotics were done. Hard to keep reflux in check when it seemed he was almost always on antis. So that may be what is making it worse. Also, it may be the milk still. You may want to consider going all the way to an elemental formula like Neocate or Elecare to see if it helps her. I hope the new GI is more helpful and takes her pain seriously. Hang in there and let us know what the new GI says.
Jun 23, 2009
helen lai
Mom to Matthew, 01/16/08, GERD baby, has been on Zantac since 2 mos. Aidan, his twin brother, no GERD. Max-ed out on Zantac at 1ml-3 times/day, and switched to Prevacid 15mg split tab 08/20/08. Switched again to 20mg Prilosec 09/18/08 due to Prevacid's restlessness/headache side effects. Reflux was out of control again and had to switch to 10mg Nexium 02/11/09. Good result so far.
My heart goes out to you and your little ones. It's indescribably sad to watch your little one in pain and nothing you do can comfort them. One of my twin has severe GERD and still on med, but the reflux is under control now. Antibiotics made my son reflux symptoms worse and significantly slowed down his digestion. How much is her Prevacid dosage? Tylenol would not help with acid burn pain from reflux so it could be something else other than reflux alone. I would ask the new GI about the right dosage of Prevacid, necessity of testing for milk/soy protein allergy, upper GI, endoscopy, etc. The positive thing is that she still gains weight and grows even though it's slow. It's good idea to video tape her episodes for the doctors. You came to the right place. The moms on this forum are great and very supportive. I hope the new GI doctor can help her better. Lots of hugs!!
Jun 23, 2009
mommy2k
Welcome! I can't imagine doing reflux with twins. My son is 6 months old. He doesn't sleep, fusses and has times of choking. We currently are dealing with the gi trying to figure him out and wanting a second opinion as well. I would just suggest going with your instincts. Make sure the docs listen to you. Give them a lot of details of what's going on (screaming, refluxing, when it happens, etc). I brought a list of questions and then wrote the answers down so I wouldn't forget what the doc said. It's a lot of info to give and take down. I was having a really rough day with my little guy and wondering how I was going to make it. I think that you gotta be an awesome and strong mom. Hang in there! I wish I was more help but I just wanted to let you know that it is very very hard to deal with and you're in the right place.
Jun 24, 2009
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.
I would back up the suggestion to at least try an elemental formula (Neocate or Elecare) for a few weeks & see if things get any better. Also, make sure everything (meds. includ.) you give her is dairy-free. My son did a little better when Children's Hospital switched him to Nutramigen - but just a little. His big breakthrough was going to Neocate - the first time in his short little life that he was not in pain. Good Luck. Congrats on twin girls - what a blessing. Ellen
Jun 24, 2009
adelines mom
don't ever let anybody tell you you have a fussy baby! definately get a second opinion. there are really good doctors out there. write your questions down before your visit. i have kept a daily log for adeline for the last year. it really helps. you are so tired you forget stuff. you can go back and see patterns, etc. later on. we have had a tough time with antibotics too. first couple of days are okay, then the reflux gets worse, then diarrhea and then diaper rash. a friend told me to use water and cotton balls to wipe and then put mylanta on a cotton ball and dab on her bottom and then sprinkle her bottom with corn powder. it really helped the diaper rash. we had good luck on prevacid for awhile. then she got raspy and a bit conjested sounding and then it stopped working over night. she let us know that it was not working!!! we tried to go back to axid, that had worked for awhile in the past. it didn't. then moved on to compounded prilosec and that has worked wonders. you hang in there. you and your husband are in the trenches and you are doing a GREAT job. i found myself a couple of times this past year turning into shirley maclaine in terms of endearment. you gotta do what you gotta do for your child!!!!this site is so helpful. hope things get better.
Jun 24, 2009
kris10
Kristen
Twin girls born 1/9/09, Kayla (my really bad refluxer) and Kamryn (my semi-bad refluxer)
Thank you all so much for the responses!! I don't feel very amazing right now having twins with reflux! I didn't realize that antibiotics could make reflux worse, that's not good. I know that when she was in the first NICU, they had her on Neocate and she didn't like it or she started refluxing worse so they switched her to AR which made things worse and after about four other formulas ended up on the Nutramigen with enflora. However, I noticed that what was really helping was the thickener too...so maybe we should try Neocate and thickener. She's on 2.5 ml of Prevacid twice a day, twin sister is on 3.0 ml of Prevacid. She's only 9.5 lbs at 5.5 months old, her sister is almost 14 lbs. Quick question...could the compounding be different from one bottle to the next? It seemed that her reflux was getting worse (before she got put on the antibiotics) and we happened to be at the bottom of the bottle of Prevacid. I ask this because at exactly the same time, her twin started suddenly having reflux problems too...so the Dr just upped both of their dosages. When we upped the dosage it didn't seem to help, then we switched to a new bottle from same pharmacy and it helped the bigger twin, but smaller twin kept refluxing...then two days later got sick and started antibiotics and you know the rest of that story. We have gone back and forth on getting a GJ tube put in to try and help get her gaining weight more but I'm so scared to do it. I don't want to do the Nissen if I don't have too either. I will also ask about the different medicines and additional tests. I'm so glad that I asked my question, thank you!!
Jun 24, 2009
adelines mom
a's compounded prilosec has to be refrigerated. i read about and i have noticed that by the end of the bottle it DOES lose it's effectiveness. i just pitch and get call the pharmacy and get a new one. we have used the simply thick since the beginning. it works miracles! i do think that it can cause gas though. we changed to a new ped. gastro doctor about two months ago and put a on probiotics and miralax. think they both have helped a lot. have talked to lots of folks and they say the probiotics make a big difference when your child is on antibotics. we worked with a lot of different nipples and bottles. she had issues with suck swallow in the beginning. have been using dr. brown's colic bottles for a long time. #3 nipples. i mix all of her formula & simply thick in the dr. brown's mixer/stirrer. they stress about not shaking and air bubbles with reflux. does she seem comfortable with her bottle? we used the ready to feed alimentum for a long time and then switched to nestle's good start, the plain one in the purple can. i was always so afraid to change, but finally did it on my own and it helped. i keep putting in my posts that Colic Solved and the Reflux Book saved my life. not that you have a lot of time to read, but their are some wonderful chapters in both books. your girls are precious!
Jun 24, 2009
helen lai
Mom to Matthew, 01/16/08, GERD baby, has been on Zantac since 2 mos. Aidan, his twin brother, no GERD. Max-ed out on Zantac at 1ml-3 times/day, and switched to Prevacid 15mg split tab 08/20/08. Switched again to 20mg Prilosec 09/18/08 due to Prevacid's restlessness/headache side effects. Reflux was out of control again and had to switch to 10mg Nexium 02/11/09. Good result so far.
Oh, your 2 little girls are adorable. The pic melts my heart! Hang in there for a little longer. Thing will get better!
Check with your
doctor first!