Concerned Father

[Anonymous]

Well, 2 phone calls and a short discussion with a nurse later, and not yet a discussion with the ped. My patience is growing thin but I will continue to follow the proper protocol for at least the rest of today. It was very nice to be equipped with the knowledge I have gained through this site when the nurse instructed me that it may take over a week for the Zantac to kick in, and I calmly stated that an H2 Blocker does NOT take time to work.

I am now waiting for a call back from the ped which should come before day’s end. We’ll see.

Laura, We read your intro and it was quite helpful. While my wife read it I was able to finish off a copy of war and peace, which was nice. 😉 No, just kidding of course, while it was long, it was excellent!

S&H’s Mum, I am sorry to hear about your daughter and appreciate the comments and help.

We live in Bradenton, FL which is just south of Tampa and within driving distance to any major Florida city. Any help on a specialist in this area would be great.

Thanks again all!

[Anonymous]

If you can’t get anywhere with your pediatrician you might want to try your family doctor. Many of us (including me) have had better luck with family docs. They seem to be more familiar and comfortable with PPI meds and they seem to have more compassion about how painful it is; probably because they see adult patients with GERD all the time and adults can tell them how much it hurts.

[Anonymous]

Laura (hellbennt), our forum moderator is from Florida (miami)! Maybe she can help you. She’s on vacation for the week but if you post a new thread, she might see it.

[Anonymous]

Here are some recommendations that I’ve found on the site, though I know nothing about these docs myself:

https://www.infantreflux.org/recommend_FL.htm

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szavella Groupie Joined: 08 October 2003 Location: United States Online Status: Offline Posts: 879

Posted: 01 April 2006 at 11:30pm | IP Logged Orlando Florida Nemours Clinic http://www.nemours.org/internet GI- Dr. Bornstein Pulmonology- Dr. Sabogal Both of these doctors are great but I can’t say enough about our pulmonologist!!!!!!! He is wonderful and was the biggest help of ALL of the many doctors we saw. __________________ Susan Orlando, FL Christopher 8-11-00 Katie 8-23-03 Sandifer, b/fed, abnormal EEGs, pneumonia, Bronch/tracheomalacia; Now: asthma & food allergies (which were probably most of her issues all along) ——————————————— hellbennt Moderator Group Joined: 28 August 2003 Location: United States Online Status: Online Posts: 7173 Posted: 29 July 2004 at 4:21pm | IP Logged miami fl: dr. loret de mola at miami children’s __________________ ~laura~ Self-Proclaimed Volunteer Moderator Jonah 7/03:GERDfree@12mos! Silent Reflux@birth(apnea episodes/NICU) Past Sandifer Symptoms, breastfed->15mos ds#2=Ari:7/06

s&h’s mum2007-4-3 13:55:1

[Anonymous]

Welcome to the site! Everyone has basically covered everything, but I just wanted to chime in with our experience. My older daughter was an angel for the first few days of her life. Then she started arching and whining with her feeds and within a few days she was a screaming mess. She was an unhappy spitter and a comfort feeder. So, she wanted to eat constantly because she actually felt better while eating and never seemed to make the connection that it caused her pain after she was done (probably because she was pretty much constantly in pain). She needed a high dose of prevacid to help her and she has since been diagnosed with several food allergies that probably contributed to her problems back then. Her reflux is now mostly under control, but does bother her at night, so she’s on a nightly dose of zantac.

My younger daughter was almost the opposite. She has a much milder case of reflux, but she started refusing to eat almost immediately. Once we got her on a sizable dose of zantac, her reflux was mostly under control and she is now a happy spitter. We are anxiously awaiting the day when she stops spitting.

Someone else mentioned hidden dairy. That is when milk (or whey or casein or any of the other names that actually mean milk) is an ingredient in a food that you don’t necessarily think of as a milk product. For example, a lot of baked goods include milk. A big issue for us were the Gerber wagon wheels in the carrot flavor. You wouldn’t expect it, but they are also cheese flavored, so they have milk as an ingredient.

I hope that your ped returned your call!

[Anonymous]

Hey Qman its great to have another “dry wit” around.

We also had better luck with our family Dr so I will add my voice to that chorus.

I hope you have heard from you pead….keep ringing…one day I rang 8 times and she finally rang back about 8pm…needless to say her receptionist got to know me pretty well by that stage

[hellbennt]

waving hi from miami!

ok I’m not there this moment, but will be tomorrow…

I totally trust susan (we still email from time to time) so I would go for her doctor or, even ours, but he’s at the end of the world for you (& well everyone, LOL)

[Anonymous]

Good morning all. Thanks again for the input. We did get a call back from the ped who was adamant that we wait it out another week before going back in. I am struggling of course on whether or not to take action right now or wait this out before our appointment.

It is a bit overwhelming and my wife and I are so torn on how to move forward with our little guy who turns 3 weeks tomorrow.

I am not sure if we are making progress or not, but last night it was a struggle from about 9:30 – 12 then again around 2:30 – 3.

[Anonymous]

Hi all, Well it wasn’t easy and I am not sure if it was worth it, but we waited the ‘2 weeks’ and just returned from our ped appointment. The silent reflux has not gotten any better and in short the diet and Zantac blow. So…. I didn’t go into the appointment in the best mood and was sure the Ped couldn’t say a single thing that would make me feel any better unless it was something I had heard from someone on here.

After showing him a video of our little guy’s latest rendition of Ombra Mai Fu, he immediately said we were to visit a specialist ASAP and he would fax over a recommendation today. I called the Doc as we were leaving and we are scheduled to go in on Thursday morning.

The ped said there was no question we needed to get on a PPI but wanted the GI doc to make the recommendation.

Joshua, Mommy and Daddy are struggling lately but there is a light at the end of this tunnel.

Looks like I need to get one of those fancy picture things at the end of my name with a list of what he will be on.

Thanks again to all for your input. This site has been extremely helpful.

[Anonymous]

Hi Qman! Your sense of humor cracks me up!.

Bring the video with you to the ped GI appointment and show the doc the footage. Get the worst footage you can so they see what you’re dealing with. Go in prepared knowing which PPI you want to try, and what type of dosage you’re interested in. Fight for a top down approach to treatment (where you start with a higher dose and then wean down later on) as opposed to a top up approach (where you start with a lower dose, and keep increasing it if things don’t get better). We’ve learned from experience that the first way is much better- go higher! I would look at http://www.marci-kids.com , to know what kind of dose range is good for his weight and age. I would also print off some of the pages from that site- the memo for docs link from the left side of the page, the dosing guidelines, and the members on the team, to demonstrate credibility- just in case you need supporting information. Go in prepared and firm in what you want to get out of the appointment, and do accept no for an answer. I’m not saying this to be negative, but I guess I’ve become kind of a non-believer in the health care system after our experience with Hailey.

I hope that your son can get some relief. Your son is lucky that you are doing all this research for him so early on. I know it’s hard to find the time when you’re dealing with a refluxing infant, but this place is also an AMAZING support for moms. I found that the stress of this whole situation impacted me as a mother in a way that was much different then my husband, and no one really seemed to get it until I came here. Good luck. Please keep us posted.

s&h’s mum2007-4-10 15:2:29

[Anonymous]

Goodluck with the appt Q man. Stick to your guns mate.

Can’t wait to see your fancy picture thing. Just click on lilypie.com and it will lead you to making your own.

[Anonymous]

Yes, good luck and like Lori said, go in knowing what you want! I would definitely bring the information from marci-kids. Most docs are not aware of this current research and they usually underdose.

[Anonymous]

I think that is such a great idea- to bring in a video of the arching, screaming kicking refusing to eat little bundles of misery and then ask them “so how long before the zantac kicks in” ? Sounds like it was just what the dr needed to get in gear and get your little man some help!!

Sadly, the PPI DOES need time to “kick in”, but it will!!

Tina

[Anonymous]

I’m a bit late to read this, but just wanted to say “welcome” and I’m so glad that you are on your way to getting your little one some help. I don’t have much more to add to what’s been said already, but just remember that YOU are the ones living with your little guy, seeing him in pain, not sleeping, etc. The doctors don’t hear him scream all day, and they often seem only concerned if they stop gaining weight or stop eating. All that to say, push for what you know is best! Best of luck with the GI doc.

[Anonymous]

Good evening all. Well, it was an eventful day but unfortunately I have no clue if it was successful or not and need your assistance. The specialist did the once over and the prescribed the following:

Axid – .6ml 3 times a day for 7 days
Mylanta – 1ml 4 times a day for 7 days
Prevacid – 2ML 1 time per day (I am assuming this continues until we are better)

My son is 4 weeks old and weighs 11lbs 14oz. The Prevacid bottle says it is 3 mg / ml.

I have 4 questions.

1.) I went to the marc-kids website and see their recommended dosing. How low are we compared to what the recommend?

2.) Do you think this assortment of meds sounds right?

3.) How long will it take for the Prevacid to kick in?

4.) Any pointers on giving the medicine?

Thank you all. I am hoping we are on the road to recovery but still not sure.

[Author]

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