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August 25, 2006 at 12:12 pm #12285
Anonymous
InactiveI have been waiting to talk to my pedi gi about the boys’ upper GIS. Instead, the nurse calls me. They don’t even have Jack’s results back and Max’s were normal. I told her that the boys still push away their bottles after an ounce or 2, and that they sometimes projectile vomit, they wake up a lot at night, and they are so fussy. She said the dr says all babies have reflux and as long as they are thriving… hello! they are thriving because I do everything I can think of to get them to drink. She said they can see a psychologist to go over why they aren’t drinking!! I just want my babies to not be in pain and to drink!!!
I have no clue what to do with their meds – they aren’t helping them to drink more.
August 25, 2006 at 1:12 pm #12289InactiveI’m so sorry to hear that your babies are so uncomfortable. I’ve sure been there, but I only had to deal with one refluxer at a time. I don’t know how you do it with two.
My only suggestion would be to find another doctor. You’re boys’ doctor is obviously clueless about infant reflux. They don’t need a psychologist. They need to be pain free so they can enjoy eating like babies normally do.
My son was just like your boys; irritable most of the time, had little to no appetite, and only thrived because like you; I did everything but stand on my head to get him to eat. Once he was on the right dose of Prevacid it all turned around.
Did you show the ped gi the http://www.marci-kids.com info? That’s how I fianlly convinced Myles’ doctor.
How long have they been on 22.5mg of Prevacid? How old are they and how much do they weigh? Are you giving it all at once, or dividing it into two or three doses? Are you giving it on an empty stomach and following it up 30 minutes later with a full meal?
August 25, 2006 at 3:56 pm #12317InactiveI’m so sorry that you’re going through this. I’d definitely be crying as well if I had twins with reflux (heck, I used to cry with just one). It also sounds like your ped GI is an idiot. My advice to you is to find a new GI doc. I personally wouldn’t waste my time faxing the marci-kids info (no disrespect intended, Christine), but any doc who feels that “all babies have reflux” and it’s only a problem if they’re “not thriving” is a pompous a** and isn’t going to listen to anything that you have to say.
We went through the same thing with Hailey and I went from doctor to doctor. No one took us seriously because she was gaining, but they didn’t take into account that she could go for more than half a day without eating, and then still refuse to eat, and that I was trapped in the house trying to sleep feed her all day as she pulled off the nipple after every few sucks. She miraculously gained weight, but she didn’t sleep, she cried non-stop, and she thrashed around so much that you couldn’t even hold her… certainly not thriving by my account.
We were eventually referred to a feeding psychologist, because the theory is that when babies don’t eat, the reason is something that the mother did. We were told that if mothers have a lot of anxiety or PPD then they can misinterpret their babies cues, and that this can lead to a pattern of force feeding and not wanting to eat. Let me tell you that this is a CROCK OF CR*P!!!!! I told the feeding psychiatrist that as well the last time I saw him. THIS IS NOT YOUR FAULT! YOUR BABIES DON’T NEED A PSYCHIATRIST, THEY NEED THEIR PAIN CONTROLLED. (That’s just my opinion, of course). I really believe that we could have avoided Hailey’s feeding aversion if she was treated properly early on. I agree with you, that babies should be able to eat without being in pain, even if they’re gaining.
Please hang in there. Get help if you can. Arm yourself with knowledge, and try to find a new doc, so that you can easily sort out the good ones from the bad ones.
Where do you live? Maybe we can help you find a new GI for the boys?
HUGS.
August 25, 2006 at 6:06 pm #12332InactiveI don’t know if anyone has said this or not, but the upper gi is pretty much a waste of time. It can show a baby that has reflux not reflux or a baby without it reflux. My friends husband actually does the test and she is the one that told me that.
I agree with the above find a new doc. Just a couple questions. Are you bf or formula feeding? Sometimes allergies can be to blame. Also what type of Prevacid are you giving? Solutabs or packets?
Shelby
August 25, 2006 at 7:33 pm #12335InactiveThat is so frustrating – all I can say is to echo the above posters opinions on finding someone else who knows more about reflux. I wish I could offer more advice but know I am thinking about you and your little ones and sending good wishes your way
Robin
August 26, 2006 at 7:14 am #12351Inactivethanks everyone. I am in southeastern Mass. I am near Providence, RI – so we were going to Hasbro for their GI. There are lots of other GIs there, but they all work with the same nurses (who I have to talk to all the time).
August 26, 2006 at 7:15 am #12352InactiveOh they get 15 mg in the morning and 7.5 at night. Two of the doctors at hasbro had told me they never prescribe over 15. When we tried 30 for the day, the boys seemed to be in pain. Straining, waking up screaming. So I am not sure if I should try it again. All doctors are different. They weigh about 14.5 and 15.5 lbs.
August 26, 2006 at 9:15 am #12358InactiveThey may have been reacting to the additives in the solutabs (aspertame and lactose). My son had no problem on the lower dose but when we upped it to 30mg he had tummy cramps for about two weeks. Once his body adjutsted to the higher dose the cramps stopped and the higher dose proved to be the answer for him. I’ve read here that other moms report the same thing; cramps initially but then the baby did fine.
Also, they may do better with 3 doses a day. Myles got 10 mg / 3 times daily. Maybe you could try splitting their dose three ways and see it that helps.
August 26, 2006 at 11:32 am #12367hellbennt
KeymasterAugust 26, 2006 at 3:23 pm #12378InactivePlease forgive me, as I live in Canada and know nothing about American geography, but I pulled these recommendations up for you. They are in Mass. as well, but not sure if near you:
MASSACHUSETTS:
Boston: Dr. Laurie Fishman pediatric GI Children’s Hospital, Honeywell Bldg. 300 Longwood Avenue Boston, MA 02115 Phone: (617) 355-6058 She is a wonderful, compassionate, young, popular doctor. It does take quite some time to get an appointment but it is well worth the wait. She is also an instructor in Gastro at Harvard. ———————————————————— ————————————
Dr. Tim Buie pediatric GI Mass General Hospital 55 Fruit Street Boston, MA 02114 Phone: (617)726-2930 Dr. Buie is wonderful–so gentle and genuinely sympathetic to children. He really helped our two boy. svh@sls.lcs.mit.edu ———————————————————— ———————————— ———————————————-
Stoneham: Dr. Jeffery Feldman pediatrician 3 Woodland Road Stoneham, MA 02180 Phone: (781) 662-4560 Doctor Feldman is a great pediatrician who did all he could for my 4-month old daughter who has been diagnosed with reflux. He put her on Zantac and when that didn’t help, he immediately sent us to Children’s Hospital in Boston to a Dr. Paul Rufo who was also very caring. Dr. Feldman takes you on time for your appointments and takes his time with you. He never rushes your visits and always listens to your concerns. If anyone needs a great doctor who really cares for his little patients please go see Dr. Jeffrey Feldman. ———————————————————— ———————————— –
Waltham: Dr. Aubrey Katz pediatric GI Pediatric Gastro. Assoc. 40 Second Avenue Waltham, MA 02451 Phone: (781) 466-8988 Dr. Katz has been great with our child. He has allowed us to be involved in every step of our son’s care. We never feel left out and always have a voice. He is seasoned and confident.
Dr. Alejandro Flores pediatric GI Same practice as Dr. Katz. Phone: (781) 466-8988 Again, sorry if these are a million miles away from you. Just thought I’d take a chance. Hang in there.
August 26, 2006 at 4:37 pm #12384Inactivethank you so much everyone for all the responses! I am writing a lot of this down!
August 26, 2006 at 5:55 pm #12385Inactivei have identical twins boys also- jack and matthew. they both have reflux. i remember all to well how difficult having two babies with reflux is- my boys are now 2. i just wanted to offer some support and let you know that this forum helped me tremendously!
August 26, 2006 at 10:39 pm #12394InactiveJust a note, Joel from Marci-Kids had emailed me and told me that if my son was going to take 30 mg of Prevacid to do 7.5 morning/7.5 afternoon/15 evening. My son did not do well on the 30 mg, but maybe your twins would adjust after a few days. I hope they feel better soon.
September 5, 2006 at 12:01 pm #12966InactiveTo s&h’s mum:
Thank you for posting the info on the pediatric gi’s in the Boston area. I also live in the Boston area and have a 9 month old with reflux. We’re looking for a new gi doc, so this info is extremely helpful and timely. How did you find this? I’m also looking for a new pedi (but Stoneham is too far away), so I’d like to use your method to find someone closer to us.
Thanks,
Sally
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