Infantreflux.org | I Am At My Wits End!

This topic has 9 replies, 1 voice, and was last updated 20 years, 6 months ago by Anonymous.

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March 22, 2006 at 7:30 pm #4433

Anonymous
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no dr will listen to me! My twins are 11 weeks old and both have reflux. They scream when they eat, my son more so then my daughter. I have conveyed this to the dr and GI many times and they refuse to try anything other then Zantac(keep upping the dosage yet it doesn’t work and they don’t care). I’ve told them others are using prilosec or prevacid in preemies but they continue to say there’s no documentation and just deal with it; it will get better. I cannot just “deal with it” anymore. My kids are in obvious pain and no one is listening to me. I am trying to find a different GI but aparently we have to travel now because the only other GI doesn’t accept new patients. Mylanta and Zantac do NOTHING for my kids.

March 22, 2006 at 7:47 pm #4438

Anonymous
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Hi, there. Sorry you are having such a hard time right now. It’s hard enough with one GERDling, and you have two!! There’s help out there and this site will help you find it. It helped me with me little GERDling.

First, lots of moms have had PPI’s prescribed by their child’s pediatrician – you don’t necessarily need a GI. My family doctor prescribed Prevacid for my little boy.

Maybe you can find another pediatrician who is taking new patients.

Have you visited the MARCI-kids website yet? They have PPI dosing information there and research information that you can maybe print and take along to the doctor. (That’s how I convinced my doctor to prescribe the correct dose for my son. Most doctors will prescribe too low of a dose for infants). Here’s the link http://www.marci-kids.com/

I understand your frustration. So many doctors seem to treat Reflux like it’s no big deal, mommy just can’t cope. Lots of moms on this site have had to convince their doctor to prescribe the right meds at the right dose, or find another doctor.

We all know what you are going through and you have our sympathy and best wishes. I hope you find a doctor who will take you seriously, and I hope you little ones will be feeling better soon.

March 22, 2006 at 9:05 pm #4441

Anonymous
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I’m so sorry that you are going through such a hard time. You deserve a medal- I can’t even imagine having twin refluxers. Where are you located? Maybe someone can recommend a good GI to you. I really hope that things settle down for you soon.

March 22, 2006 at 10:24 pm #4444

Anonymous
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I just got off the internet, and found the doula’s come to your home and help with situations like this. Would have helped me when i was in your situation. Please switch to a doc. that will listen. In the mean time, you may have to take things into your own hands. They often do not give the babies a high enough dose. Make sure that you give the medicine on an empty stomach and wait 30 mins before feeding them. Also, thickening the milk with cereal or simply thick helps (no rice! too gassey). Think they are milk soy protein intolerent?

Maybe you can do another post asking for a referral to a doc in your area. The moms here know the best docs! I did it and found some expert moms near me. I love our doc. And please print out the info form marci-kids.com and take it to the doc. I would call that ped. everyday until he gave them some prevacid! I know that i was a regular at our docs. office back when my dd was small. When you get a ppi it will take 14 days to kick in, use the zantac in the mean time spaced 4 hours apart. Good luck and hang in there!

March 22, 2006 at 11:39 pm #4448

Anonymous
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I would loose my mind if I have to deal with 2 babies with this at once. I admire you. Just remember you are a great mommy and don’t let anyone convince you that you are just overreacting. Lots of people and have tried to convince me and I started to doubt myself. Don’t!!!

I don’t know if I can help or not – but I can tell you what I have done.

I tried Prevacid for my son and it was horrible. I know lots of people have had great results so don’t rule it out – it just did not work for us. Caused horrible gas that he could not pass, very loose stool explosions, cramping and constant crying for us. I know many have said this passes in 14 days – ours was too horrible we only made it 9 days.

So at this point we are just on Zantac. I have had real success with splitting the maximum daily dosage of Zantac out between feedings. We have been doing this for a few days and my sons reflux has improved significantly. For instance. Tyler is on 4 ml of Zantac per day. We give him 1 ml 4 times a day – rather than what is typically prescribed 2 – 3 times per day. I talked to both pediatrician and Glaxo Smith Kline and both said that it is fine as long as I do not give it closer than 3 hours apart. For Tyler he eats 6 times a day right now because we only let him eat 5 oz to reduce spitting and reflux. 4 of these 6 were his worst reflux times so I give him 1 ml of Zantac 30 minutes before those 4 feedings. It has worked so far. He has gone several days and spitting is reduced and he has not had sandifers arching for the past 2 days. This may not work long term. I know many have said that they build tolerence. But it is working so far so I am going to ride it out. Since Zantac is what you are on currently you may want to at least try it until you can get a good GI. Zantac did not work at all for us either until we started to dose it this way. Also make sure that they are on the maximum dose. Call Glaxo Smith Kline if you are not sure. They were extremely helpful.

Where are you located? Perhaps we can try to rally some support system for you. I would be happy to help if you are near me. I can’t image how hard this would be with twins.

March 23, 2006 at 5:45 am #4449

Anonymous
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thank you all so much. i live in nj. they both have milk and soy intollerance.my ds takes nutramigen and dd isomil. do these meds work in preemies because my dr refuses to prescribe the since she says there have been no studies with preemies. we’ve been on zantac for 2 months now with no change. we are now up to 1 ml 3x’s daily and nothing. i usually put it in their bottles.

March 23, 2006 at 7:23 am #4453

Anonymous
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Where in NJ do you live? I may be able to recommend someone as I live
in NYC but have a sister in NJ (Bergen County) and a close friend with
recovered reflux twins in Livingston.

Let me know and I’ll try to help. It may be worth traveling to get your poor babies some comfort and relief and you some too!

March 23, 2006 at 8:53 am #4462

Anonymous
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yes i agree thanks. i live un edison. bergen is 45 mins from me. i live closer to nyc i think. i just need relief for them and someone who will listen.

March 23, 2006 at 8:58 am #4463

Anonymous
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Edison is pretty close to Livingston, no? Maybe like 20 or 30 minutes?
If so and if you want to go there, my friend with twins saw Dr. Nord.
However, she thought he was very good but bad bedside manner –
supposedly Dr. Scenario (or something like that) in the same practice
has nicer way about him. The practice # is973-322-7600.

March 23, 2006 at 10:49 am #4478

Anonymous
Inactive

thanks. livingston is not far.,
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