Posted By Posting
Nov 12, 2008
amber f
Bobblesmom's post with some ?s
I hope you don't mind but you have some ?s that others I'm sure can help you with and I don't want this to be missed since the update post is almost to the other page.

Aaron's update since the PhProbe

Well, since we last were here, Aaron had the PhProbe. What an experience. All I can say is that likely this test is easier on infants who aren't yet mobile and toddlers who are a lot more independent. Aaron is 9 months. He's cruising and very very active but the test was really bad because he kept getting tangled no matter what I did. He "slept" beside me, if you can call that sleeping. Every time he moved, he got an arm caught in the cords. I'd get that untangled then he would flip and catch his leg. Then he wanted to nurse the entire night. Needless to say, it was terrible. They need to come up with a "wireless" approach to this test. It really surprised me at how dangerous this was considering that you are told to keep them away from cords, blankets, etc--and this was now attached to him! Anyway, since then I haven't put him back on his meds. His puking has really gone down considerably but he's still complaining during the night. He seems to want to nurse constantly, more to soothe than anything I think. I don't know if I should put him back on the meds because they didn't seem to make much difference in terms of helping him at night. Any suggestions or ideas? I've also started to cook his meals differently now and that seems to be helping a bit too. My husbnad thinks we should just put him in bed and let him cry it out, but that's not the right solution in this case. Not with reflux. Am I wrong? Anyway, I'm glad that I'm seeing a bit of an improvement and am hoping that he will be able to stay off the meds. I won't know until I speak to the doctor as it is. Hope everyone else is seeing some light at the end of the tunnel? I'm trying to find the light here! :)

Nov 12, 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!
I totally missed this.

Before I can really answer I have to ask a few ??. What does he eat? Are you on a modified diet since you breastfeed? I'm trying to see if there are dietary changes that might help. Also what med and dosage was he on? It may be that his med needs to be increased or entirely changed. It's very possible that since he's upright more, it's not bad during the day but then at night when he lies down, it gets painful. Some have been put on one dose a day and if that's the case with him, you may want to break the dose into two-morning and night.

Sorry if I'm babbling, I'm just trying to cover all the bases I can think of. Hugs!

Nov 12, 2008
amber f
Now some answers from me:)
I don't think cry it out will work when a child is in pain. That is my opinion on the subject. I'm sure he is a lot for the comfort. I would try some other meds. It really takes the right med, elevation in bed, and routine that to get the reflux under control. Uncontrolled reflux can destroy his insides. I'd talk with your doc about all the options. Prevacid solutabs were our life saver. We tried Zantac and prilosec first and that didn't help. Prevacid takes a few weeks to see the optimal results. Yes there is light at the end of the tunnel. We are currently cuting down my ds' meds.
Nov 12, 2008
amber f
Sorry I was interupted in the middle of my post so it doesn't totally make sense but I hope you get the gist of it. Melissa brings up so good points to. We must have posted at the same time. I hope you can discuss everything with the doc and find something that works.
Nov 12, 2008
bobblesmom
I am the Mother of 3 children, Alix, Aaron, and Aidan. Alix (5) had "silent" reflux until she was 5 months old; Aaron(age 2) has had GERD since he was just days old but was officially diagnosed with it at 4 months old and has had many tests to confirm it since. Aidan (8 mos) has no signs or symptoms to date thankfully. I never knew what it meant to have a "normal" baby since I had 2 pukers! Nobody understands how hard it is to take care of GERD babies unless they've had one themselves.
Some answers to your very thoughtful questions
First , thank you for taking the time to respond. I know how difficult it is to juggle sick kids and life in general. Aaron has been on Prevacid--1 ml in the morning, and now Axid 2 ml before bed. That was just increased in the last month. There was no actual improvement with that. We started him on Zantac but that wasn't working. I've noticed that since he's been off the meds, his nights aren't any better, not any worse. Although last night was pretty much back to the screaming pain again. I just don't know if I should put him back on everything or just try one for a week and then see what happens. As for my diet, I don't have much dairy at all because I've been lactose intolerant since I was a kid so there's that. I stay away from most citrus, all things that are cruciferous (cabbages,etc), I have 1 cup of tea/day--in the morning. I don't drink anything carbonated--and if I ever do, it's during the day. I don't eat spicy or fried foods. I do try to eat balanced meals and am very careful with what I eat. I've often wondered if that's what does hurt him but nobody (doctors, etc) don't seem concerned because he is already nearly 10 months old and is growing nicely. He's now 30" tall and 22lbs. If I knew how to upload a picture here I would! In previous postings, I mentioned that the Gastro doctor I took him to see basically told me that he has a sleep disorder, not reflux. This was before the phProbe. I was not impressed because I know that he does have trouble sleeping, but it's because something is bothering him. He's been on Prevacid since he was 4 or 5 months old--I can't remember at the moment. By now, I would have expected it to be working better but I don't see much difference to be honest. I'm thinking that he needs a different medication again. I have started to grind up my own cereals--irish oats, rolled oats, brown rice to see how he does with that. He definitely likes them better. Much less processing than the commercial baby foods. Plus I'm cooking fresh vegetables and fruit for him. That's making me feel better because I know it tastes better and is better for him. It's all we can do as mothers to take care of our kids the best we can. We're all fighting colds now since he had that procedure. I can only hope that we will get some answers soon.
Nov 12, 2008
jedd'smommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
YOu said the dose of the prevacaid was measured in ML's. Are you getting it compounded??? I know most kiddos on PRevacaid do tons tons better on the solutabs. The suspensions where down way way faster than they tell you.
Nov 13, 2008
amber f
I would have to agree with trying the solutabs. I was using prilosec in the liquid form and we had to go back every 2 weeks because it seemed to wear off and he was gaining weight at a fast rate. At nine months he was around the same height and weight as Aaron and at 12 months he was 28lbs and almost 33 inches. So it can be hard to get a doc to take you seriously when they gain weight so well. But my son was a comfort eater also and just a big boy in general. You are right you just have to try your best to do what you feel is going to help your son. Hang in there things do get better.
Nov 13, 2008
bobblesmom
I am the Mother of 3 children, Alix, Aaron, and Aidan. Alix (5) had "silent" reflux until she was 5 months old; Aaron(age 2) has had GERD since he was just days old but was officially diagnosed with it at 4 months old and has had many tests to confirm it since. Aidan (8 mos) has no signs or symptoms to date thankfully. I never knew what it meant to have a "normal" baby since I had 2 pukers! Nobody understands how hard it is to take care of GERD babies unless they've had one themselves.
meds
Aaron's meds are made at a compounding pharmacy. He has been taking 3ml every morning of the Prevacid (up until 2 weeks ago). They have him on the max dose for this medicine according to his weight. I'm debating on what to do because he's fine during the day without any meds, but it's at night where the problems start. I'll likely call my doctor this morning to see what she thinks as I haven't heard anything from the Gastro regarding his test results.
Check with your
doctor first!