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Jan 27, 2011
ljoy_22
before we see a specialist??
Just wondering if it would be better to eat the foods I am suspicious of bothering my BF baby or not? We have our first appointment with a GI specialist next week and I am not sure... Any other things to think of before the appointment?
Jan 28, 2011
lorenzomama
Lorenzo b.4/25/07 1 week in NICU w/ aspirate pneumonia from a reflux episode; diagnosed GERD at 9weeks; Used Zantac for 5months. Currently using Chinese Medicine and Craniosacral Therapy. GERD, Obstructive Sleep Apnea, Sensory Processing Disorder. Ask me about breastfeeding a refluxer! Pic: day 5 in the NICU.
Sorry if you've already done this on another thread and I missed it, but can you give us some more information about your little one and your concerns? That would help to generate ideas about what to bring up at the GI.
Jan 29, 2011
ljoy_22
This is a copy and paste of another post: Hi, I am posting for the first time since my son was born. He has reflux and started on Zantac at 2 months and after about a week of being on 1 mL, I saw a drastic improvement in his eating habits, fussing, and sleeping. Just before 3 months, he started getting symptoms again. I asked to get his dose increased since he had a growth spurt and he is now on 2 mL of Zantac. Some days, things are great. He will go to sleep when I lay him down, he fusses very little, and he eats well (although often, he usually eats every 1-2 hours during the day). Other days are another story. He fusses when I'm not holding him constantly. He thrashes or screams immediately after I lay him down to sleep and continues until I pick him up. He wakes up 10 minutes after I lay him down if he does manage to get to sleep when I'm holding him. He breastfeeds poorly (lots of on and off and starting/ stopping). Is this is as good as it gets with a baby with reflux? Or should I try to figure out more what upsets him/ what else can be done? He hasn't been to a pediatric GI at all yet and we definitely haven't tried everything. I did do a dairy elimination diet before we went on Zantac at all to see if it helped, but found that it didn't. Chocolate is a MAJOR problem (causes non-stop crying 48 hours after I eat it). Other than that I haven't done a total elimination diet because it's so hard to pinpoint what, if anything is the problem and I'm not sure if I'm just expecting too much? A week ago, we saw a doctor other than his regular doctor and she did give us a referral for a GI specialist, should we decide to go that route. She also had concerns with his breathing (said it sounds tight/ wheezy), but she said an ENT would probably say that's just how babies sound this early on. She was also concerned with his BM's since he will go as long as a week without one. (Have been having more lately, but still usually a couple days between). So, I am interested in any and all input that might be helpful! I have some ideas (and have tried them) from when my daughter (now 2 1/2) had reflux. She was a much more difficult baby, though and I had an awful time with finding a doctor who would even take her issues seriously. She was not put on Zantac until she was 5 months old and then it never completely helped her. We were also not referred to see a GI specialist until she was almost 2 and her issues were improving, so we never did get to the "bottom" of her issues. She was a horrible sleeper at night and kept me up multiple times a night for hours until she was 2. My son is a drastically better sleeper, but compared to my friend's non-reflux babies, he is still pretty challenging. I don't know what, if anything, to do next and am just trying to make life the best it can be with a baby with reflux. Thanks much in advance!!!
Jan 29, 2011
lorenzomama
Lorenzo b.4/25/07 1 week in NICU w/ aspirate pneumonia from a reflux episode; diagnosed GERD at 9weeks; Used Zantac for 5months. Currently using Chinese Medicine and Craniosacral Therapy. GERD, Obstructive Sleep Apnea, Sensory Processing Disorder. Ask me about breastfeeding a refluxer! Pic: day 5 in the NICU.
Okay, sorry, now I remember! Do you have a list of questions already written out? Are you primarily concerned about allergies, reflux, breathing, all of the above? Do you keep any logs/journals of how things have been going with your LO?
Jan 29, 2011
ljoy_22
I made a list of things to talk about/problems we're having. I haven't been logging him lately, but I did for a little while. What questions would you ask?
Jan 29, 2011
jeddsmommy
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
First, babies just don't sound wheezy/tight. I would not consider that normal at all and would ask to have a swallow study done, if you can get him to drink enough to have it done. That will tell you if he is swallowing properly or if the milk is going down the wrong way causing the wheezing sound.

You can also ask to be on a stronger med. If you are not seeing the results with Zantac that you want, then move to a PPI. They are much stronger and you will get better results with them.

If you are breastfeeding, then more likely than not, you will have to eliminate the top allergens completely until you see results. Once that happens you can add one food back into your diet at a time for about a week or so and see if the issues resume.

I didn't BF but this is somewhat what I've heard from others.

You can also ask for an Upper GI (UGI( to be done so they can have a look at all the structures of the esophagus to see if they are looking good or not.

You can also do a scope (EDG) to see if there is any damage already present from the GERD so far.

Jan 30, 2011
lorenzomama
Lorenzo b.4/25/07 1 week in NICU w/ aspirate pneumonia from a reflux episode; diagnosed GERD at 9weeks; Used Zantac for 5months. Currently using Chinese Medicine and Craniosacral Therapy. GERD, Obstructive Sleep Apnea, Sensory Processing Disorder. Ask me about breastfeeding a refluxer! Pic: day 5 in the NICU.
Given what sounds like the erratic nature of his troubles -- doing well, and then doing poorly, I personally would really explore the allergy/intolerance potential. There are all sorts of things that can exacerbate reflux, but allergies are the thing that, especially in breastfed babies, seems to have that pattern of doing fine for awhile, then doing terribly for a few days. That said, things like teething and growth spurts can also wreak havoc on a refluxer, and it can be incredibly difficult o determine which of the many exacerbating things is actually causing a problem at a specific time. Thus the big potential value of going to a PPI, which is more likely to really settle the reflux pain and make it clearer if there is more than just reflux going on.

I found it helpful to have a sense going into GI appointments (or any other, for that matter) if I was leaning more toward testing to determine specific issues, or taking a more experimental/wait and see approach. If I knew I wanted testing, I would be more inclined to speak with the GI about specific tests, what is involved, what they determine and what is done if particular diagnoses are made. If I knew I wanted to take a more wait and see approach, I would be more inclined to discuss alternatives to testing, like medication trials and other referrals to further discuss related issues (in your case, to an allergist to discuss allergies and a pulmonologist to discuss the breathing), as well as his/her perspective on the benefits/risks of more aggressive diagnostics versus trial and error/wait and see.

For any breastfeeding mother who is concerned about allergies, I highly recommend a visit to the La Leche League Mother to Mother Forums at www.llli.org -- specifically the Allergies and the Breastfeeding Family forum. You may also want to explore www.kellymom.com for further breastfeeding/allergy information. And just briefly on the pooping issue -- unless he is having a hard time passing the bowels movements or is developing anal fissures or other problems from straining, pooping infrequently is not at all abnormal for breastfed babies -- after 14 days is generally considered the worry point, before that, in the absence of obvious difficulty with the movements themselves, it is almost always just individual difference and the high digestibility of breastmilk (assuming that you are exclusively breastfeeding).

Best of luck to you, and let us know how it goes!

Feb 01, 2011
ljoy_22
Thanks for all of the advice! We had our appointment yesterday. Went ok~ good news is he is growing/ developing normally so dr. doesn't expect long-term problems. He gave us a few options for now:

do an elemental formula trial (scary because I have trouble pumping and fear my milk drying up since I'm exclusively breastfeeding);

get a GI scope;

wait it out and use phenyl barbatol (not sure on spelling) drops as needed when he is really fussy to help us "buy some time" in the waiting it out game.

I thought about it and requested just bloodwork be done looking for problems such as allergies (my thought was that is a first step that would be less invasive than full GI scope).

Thoughts?? Anyone use phenyl barbatol~ I've never heard that suggestion before! What can I expect for results with bloodworK? Thanks again!!!

Feb 01, 2011
ljoy_22
I have a couple more things to add:

Spelling is phenobarbital.

The dr. seemed doubtful that uncontrolled reflux is the problem. Not sure if that's because he doesn't burp up a lot?? He said most babies don't produce enough acid to cause pain when they regurgitate. Zantac does help some though (even if it doesn't make him completely happy), so is there another problem that can be helped with Zantac?

This is such a confusing thing to deal with! It's hard to know if I should just endure until my baby finally outgrows it because it is such a mess to try and figure out what is going on. And after an awful blood draw this morning that didn't even yield enough blood for all the tests I wonder if it's worth putting him through this all if he's going to outgrow it eventually anyway ? :(

Feb 01, 2011
lorenzomama
Lorenzo b.4/25/07 1 week in NICU w/ aspirate pneumonia from a reflux episode; diagnosed GERD at 9weeks; Used Zantac for 5months. Currently using Chinese Medicine and Craniosacral Therapy. GERD, Obstructive Sleep Apnea, Sensory Processing Disorder. Ask me about breastfeeding a refluxer! Pic: day 5 in the NICU.
Um, I am no physcian, but phenobarbital is kind of a heavy duty drug...usually used to control seizures, anxiety and severe insomnia. What is your doctor saying it is meant to do for reflux?

Not to confuse matters more, but it is important, IMO, to be aware that even non-acidic reflux has the potential to cause secondary health issues and so should not be merely written off as no big deal if there is any indication of other issues (like congested breathing and distress during reflux episodes). And, I hate to be the bearer of bad news, but, while it is true that MOST babies outgrow reflux, I discovered the hard way that there are no guarantees about that. I don't mean to suggest that you should move forward with aggressive diagnostics or treatments, simply that you may find you need to remain very attuned to your own intuition and observations in order to decide how to proceed -- there may never be a clear cut answer to the question "how should I proceed" and that is one of the enormous challenges faced by parents of refluxers who are not in crisis -- trying to discern the most beneficial path. My personal approach has been one of patience and a minimum of invasive procedures, but very rarely have I ever felt certain that how I am proceeding is the best path for my son. My advice is to, as you already have, obtain as much input from others as you feel is helpful, but never, ever lose sight of what YOU know about YOUR child and the quiet voice of intuition that is always there to guide you...

Feb 02, 2011
ljoy_22
Thanks for your two cents and encouragement! I really needed that. The phenobarbital would just be to calm him down and get him to sleep... it would be used as a sedative :S Unless I am really getting to the end of my rope, I don't really want to do that. Seems a bit extreme.
Feb 03, 2011
lorenzomama
Lorenzo b.4/25/07 1 week in NICU w/ aspirate pneumonia from a reflux episode; diagnosed GERD at 9weeks; Used Zantac for 5months. Currently using Chinese Medicine and Craniosacral Therapy. GERD, Obstructive Sleep Apnea, Sensory Processing Disorder. Ask me about breastfeeding a refluxer! Pic: day 5 in the NICU.
Personally, given what I know now about children's sleep and children's sleep disorders, I would NEVER give a baby who has frequent wakings and/or restless sleep ANYTHING intended to improve or prevent those things without first having a polysomnograph performed by a qualified sleep lab.
Feb 04, 2011
shelefisher
Michelle
Noah 6 years
Paige almost 4 (GERD graduate!)
Soren 11 weeks - (GERD, Soy and Dairy sensitive) 15mg prevacid + 2mg zantac
Just wanted to add that dairy can take at least 2 weeks to completely leave your milk. I tried on and off with my daughter and was convinced it wasn't making a difference but she wasn't getting better so I stopped all dairy which is a huge thing for me because I'm a vegetarian and hate the taste of meat. She slowly started to improve and by around week 3 sleep and daytime were dramatically better. She still had reflux but at least without dairy the medicine (prevacid) was helping. For my son I stopped and started dairy too but finally have cut it all out and definitely notice a difference. Night sleep still is horrendous but we've just switched from solution based prevacid to solutabs so I'm hoping the increase in dose will help. Chocolate has caffeine and dairy so is definitely a problem for a lot of kids. Oreos are dairy free and don't have a ton of chocolate so are good for a chocolate fix :) There is dairy hidden in a lot of things so it can be difficult at first to cut. Good luck. I agree with the others though - I'd skip the sedative for the baby. Is it possible for you husband/partner to help out at night so you can get a break? I've found with my 10week old that I have to hold him up right and pat him for nearly 2 hours after I feed him each time or he just wakes up refluxing when I put him down. If he's not sleeping well that just adds to his misery and mine :( so when it's a super bad night I have my husband take alternating "hold the baby up shifts"
Check with your
doctor first!