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January 10, 2013 at 10:57 am #71412AnonymousInactive
I am new to this forum and have spent the last few days reading as much as I can. My son is 2 months old as of yesterday, and since birth has had problems with reflux. (actually our first son had similiar problems but changing his formula and taking Zantac did the trick for him.) Our new born had problems within hours of birth, the doctors thought it was just fluid in his lungs from an extremely quick delivery, but shortly after they thought it was a milk allergy and switched him to a soy based formula. That didnt help so we were switched to Nutramagen and Zantac. That combo helped reduced the pain reflux for about a week, but it came back and worse than ever. We have been to the doctor a few times and just recently were prescribed previcid in the liquid compounded form and referred to a GI specialist who we see on Tuesday. I did read here that we should continue to give him the zantac while on previcid which our pediatrician didnt say so I have a call into her to make sure she is ok with it (thank you to all of you for letting me know this). But my question is this…what should we expect on our first visit to the GI doctor? My wife and I are a bit nervous..obviously we want him to get better but the whole idea of him having to see a specialist is a bit nerve racking.
January 10, 2013 at 7:26 pm #71413hellbenntKeymasterwelcome!
you’ve found the best place to research all you can to be the best advocate for your baby!
first of all, I have learned that it’s better (in most cases) to TELL your doctor and see what happens. So, I’d TELL the doctor that you’re going to continue with the zantac, as you wait for the proton pumps to shut off (that’s what the PPI does). Research all you can in the Medicines Forum and then you’ll know what you’re talking about when you TELL the doctor.
Seeing a specialist may or not help, I’m afraid.
Look here to help you research:
Looking for GI: https://www.infantreflux.org/forum/forum_posts.asp?TID=660
there are recommendations for ped GIs in your area…
I don’t mean to discourage you, *sigh.* It’s just that you really have to know your stuff and be able to TELL your doctor what it is that your baby needs.
Even OUR doctor, who was WONDERFUL, we had to tell. He didn’t object – he listened, our request(s) sounded reasonable, and our baby got what he needed. it was a long process. I hope to help others to get theirs going faster…
If you’re doing the compounded liquid, again, research and then TELL the doctor to please humour you and to write the RX a certain way for the pharmacist- it’s in
Prevacid 101:
scroll to the last page of this post, (it’s actually also about other PPIs like prilosec, too)
https://www.infantreflux.org/forum/forum_posts.asp?TID=1936&PN=0&TPN=1
in the meantime, I’d research about ‘the products’ (again, in Prevacid 101)
and I can’t recommend them strongly enough- I am NOT paid by them, nor do I receive any compensation from them WHATSOEVER! I just BELIEVE in the University of Missouri and their research team and Dr. Philips, in particular.
Again, it’s in Prevacid 101 (or maybe in the ‘products’ page- the ‘products page’ is linked to from Prevacid 101)
I’d also calculate the highest dose of zantac by weight. It’s 10mgs per kilo.
no need to ‘just’ take my word on this (or anything! please don’t! research and make your own decisions!)
Zantac dosing- my/other’s question (has axid & pepcid doses, too):
https://www.infantreflux.org/forum/forum_posts.asp?TID=8288&PN=1
To be honest, I found that FAXING the doctor(s) worked best.
TELL dr you need _______ (example: new rx for zantac or how to write the PPI Rx, or what dose of PPI) don’t ask. TELL.
FAX FAX FAX the dr
don’t wait for a call…
start off with a THANK YOU
keep it short & sweet
stick to the FACTS (no emotions and ramblings)
state current meds, doses & symptoms
make request- flat out- short & sweet
provide pharmacist name & contact info
THANK AGAIN
follow up by calling office to tell them fax was sent
call again later to discuss requests made in fax, ie:
is RX called in yet?
THANK YOU
sample fax: https://www.infantreflux.org/forum/forum_posts.asp?TID=10633&PID=90325#90325
About faxing the doctor (& more): https://www.infantreflux.org/forum/forum_posts.asp?TID=2841&TPN=1
I don’t know what to tell you what to expect.
It’s hit or miss.
You could leave there feeling like you were listened to and that the dr is really going to help your baby. Or, you could leave thinking that the whole visit was a complete waste of time.
Have symptoms down pat.
If baby cries, is it HOWLING? SHRIEKING? (that’s what my baby did).
When? After eating? (for my baby it happened any time, regardless of when he ate)
How are poops?
Are they mucousy? Mucous can look stringy, like the inside of a banana, or like jelly or cottage cheese.
Are they painful?
Does baby strain & grunt & push & then when it finally comes out it’s soft?
Is it hard little pebbles?
(muscous in the diaper usually is a sign of a protein intolerance- if after 2 weeks on the nutrimigen poos aren’t ‘normal’ then it might be time to ‘move on’ to an elemental formula)
You might want to go in w/ a game plan.
Me, I’d want to address PAIN and the SOURCE of the pain.
Is it MSPI or an immature LES? Or both?
This is all in Groupie Intro:
https://www.infantreflux.org/forum/forum_posts.asp?TID=853
reflux what I have learned: https://www.infantreflux.org/forum/forum_posts.asp?TID=2948&a mp;PN=2
this is a LOT to learn, but you can do it & we’re here to help!
hang in there!
laura
January 11, 2013 at 1:06 am #71414AnonymousInactiveWELCOME!! I’m sorry that your little one is suffering! I know from experience how hard it is to watch your little one be in pain and not know what to do!
WOW! Laura just gave you a ton of good advice!!! I am a person that likes others to tell ME what to do but with my children and their digestive problems, I soon found out that it was best for me to learn as much as I could and not just depend on the doctors. It looks as if you are being an awesome advocate already though. 🙂 The Internet is a really good place (for sure this forum :)) to learn a lot. But of course you will get all sorts of thoughts and ideas and some very opposing to each other. And of course every child is different so you have to sort out what is the best thing for your child. What works for one may not work for yours.
Something that you may want to look into (not as a cure but as possibly very beneficial for your little one) is giving him a supplement of probiotics and digestive enzymes.
Here is a condensed version (although it is still long) of my children’s “story”.
My first 2 children suffered badly from digestive problems. My oldest had blood in his stools before he was a week old and soon spent most of his time screaming in pain. He always acted hungry but very quickly threw up whatever he ate and he slept for only very short periods at a time. At a couple months of age his pediatrician labeled him “Failure to Thrive”. Eventually we figured out that dairy and soy were a big part of the problem. Until he was age one he drank Nutramigen, then we tried different milks with no success. He was on Prevacid until age 3. He was able to quit the meds when we started giving him alkaline water to drink. Although it did not cure him, he was quite a bit better with the water than the meds.
My second child was pretty much a rerun of my first except that I knew just a little bit more about reflux etc. He too was able to quit the reflux meds at age 1, when we started him with drinking alkaline water.
Alkaline water helped with the reflux and pain, but did not make it so they could tolerate foods.
A year after starting them with the alkaline water, a friend suggested that I contact a well known nutritionist named Shan Stratton that specializes in digestion. I was surprised and impressed at how much he knew and how well he explained what was going on with my children. I will try my best to explain what I have learned from him along with some of what I have learned on my own through research. What I write is correct to the best of my knowledge, but it is possible that there is some incorrect statements.
Before a baby is born, their digestive tract is sterile- meaning it is free from bacteria. The baby will pick up it’s first “dose” of good live bacteria (also known as probiotics or gut flora) from the birth canal. Whatever kind of probiotics mom has in there is what the baby will get. The next “dose” which is the highest strongest dose a baby will ever get, is from colostrum. Probiotics play a huge role in the health of the baby. They make up over 70% of the immune system and they are what line, coat, and protect the entire digestive tract.
Antibiotics kill not only bad bacteria but the good also. If a mother has been on many different antibiotics throughout her life it can alter her probiotics. This in turn will alter what kind the baby gets. If the mother has been on antibiotics while pregnant, for sure close to or at the time of giving birth this can severely alter the probiotics that baby gets. In fact, if on antibiotics at the time of birth, the mother may have no probiotics to pass on to her baby. And of course if baby has antibiotics at any given time it will kill off the probiotics. If the mother takes them while nursing, she will pass them on to her baby and it also will kill his/her probiotics.
If a baby is born by c-section, this can make him/her be behind in building up the probiotics. But if he/she gets plenty of colostrum it will certainly help.
Some babies who are born by c-section, are on antibiotics, get no colostrum, or all of the above, are not necessarily doomed for digestive problems. Some babies are really strong and healthy and their body has no problems making and building up its own probiotics. But for some, this can be the start to the digestive system not working well.
For some babies, they will greatly benefit from a probiotic supplement. I personally have never used this company but it seems to be popular and is made especially for babies. http://biogaia.com It only contains one strain of probiotic (Lactobacillus reuteri) and I personally feel that when someone is low on probiotics, they are low on many, so the best supplement would be one that has at least 10 different strains in it. But the bottom line is that your child gets relief and according to the reviews, many babies feel better when taking this product.
Another problem for some children can be a lack of sufficient digestive enzymes. Digestive enzymes are what are in all foods (before they are cooked or processed) to aid in breaking them down. They are especially needed for breaking down proteins. If a nursing mom eats a diet of mostly raw foods this can help some but unless the foods are organically grown, they are not very enzyme rich. The pancreas is what makes digestive enzymes and it will try to compensate for the lack of them in foods, but for some babies it can be difficult for their pancreas to keep up making enough to break down the food (proteins in particular) that they take in whether it be through breast milk, formula, or solids as they get older.
For some babies, they can inherit the problems of their body not making enough digestive enzymes, and for these children, they may carry this problem all of their life. Just like the diabetic doesn’t make enough insulin.
When “food” is placed in the stomach, the stomach will excrete a small amount of acid to activate the enzymes so they will start breaking down the food. If there are no or little enzymes, then the stomach will excrete a little more acid. Eventually the food is forced into the intestines even if it isn’t fully properly broken down. If the food isn’t broken down then it will very difficult for the body to be able to absorb and use it. For some children, this undigested food will sit in the intestines too long and the longer “food” stays in the intestines, the more moisture that is drawn out of it, and it can cause constipation.
This excess acid that the stomach makes, can play a major part in some babies digestive problems. Too much acid will kill probiotics. And beings that probiotics are the protective coating for the entire digestive tract, then without it, the food, reflux, or stool will rub right up next to the esophagus and intestines themselves and can cause them to become raw, inflamed, and even bleed sometimes.
So, how have digestive enzymes and probiotics affected my children? Well, they have made a HUGE difference. Cure? No! They have been taking a supplement of them for 2 years and today they are able to eat any and all foods. But they have to take a pill with every meal and any snack that does not have enzymes in it. I still try not to let my boys a lot of dairy though. But if the ask for a glass of milk I will let them. They were not used to drinking milk when they were younger so it is not something they like terribly well. One evening awhile ago, when I let them have a glass of milk, I reminded them to take a pill with it. After they went to sleep and I was sitting in their room with my laptop, I noticed how restless Quinton was. Soon he sat fully up he was so uncomfortable but he didn’t wake up. This reminded me so much of
how he used to be and I got to thinking that he had probably not taken a pill. So I went and got 2 of them with a glass of water and woke him up and made him take them. I was impressed how in about a minute he completely settled down and peacefully slept the rest of the night.The brand of probiotics and enzymes we use is called “Digestive Health” sold by http://www.corehealthproducts.com/products/digestive
I have created a blog (see signature) with many different pages that you might find of interest. If you decide you want to try probiotics and or enzymes but want to use a different brand, you can go to my page titled “How to choose the right probiotics/enzymes” to learn more about what ingredients to look for. Also if you decide to try them, you should be aware of possible side effects. See page “Side effects of probiotics and enzymes”.
If interested in trying probiotics and enzymes, I would certainly ask the GI doctor about them. Some doctors are not extremely knowledgeable about them because it’s not something they are generally taught a lot about in medical school. But I would still ask about it and see what he/she says.
I wish you the best in whatever you decide to do and hope that soon you find the answers and help that you are looking for! Happy Mom2013-01-11 01:12:35
January 11, 2013 at 7:57 am #71415hellbenntKeymasterprobiotics mentioned here:
Wondertime article, Colic Solved:
page 2 of the article tells what probiotics help babies
And, list compiled by members here:
probiotics, brands used:
https://www.infantreflux.org/forum/forum_posts.asp?TID=8970&PN=1
January 11, 2013 at 8:39 am #71416AnonymousInactiveThank you all for this wonderful information, Last night was one of the better nights for my wife and I so we were able to get some sleep, although my wife is still stressed beyond belief, but your information is so helpful. I was able to get our appt with the GI specialist moved up to today at 11:00 which is nice. I called our pediatrician and asked about giving the Zantac along with the Previcid and she said no, only the Previcid, so I have instrtucted my wife to TELL the GI doctor thats what we want to do. I also am going to have her ask about the probiotics…my wife had to take IV antibiotics during delivery because she was Strep B positive so that may have contributed. I am going to re-read all of your posts over and over again because it is so much, helpful information and I want to make sure I get it all right. I will let everyone know how todays appt goes. Thank you again for all of your help, this website has been such a great find.
January 11, 2013 at 10:37 am #71417AnonymousInactiveThat is great that baby did a little better last night. Extra sleep can do wonders for baby and US! I am sorry your wife is so stressed but I understand how she feels. The responsibility of being a parent can get pretty heavy sometimes.
I’m so glad you get to see the GI doctor today and will be anxious for a report! I wish you the best!
I wish so badly that us mamas wouldn’t have to have antibiotics during delivery for the group B strep. I personally feel that it has a lot to do with many of the fussy, colicky, and reflux babies. 🙁
January 17, 2013 at 3:27 pm #71442hellbenntKeymasterany updates? I’m working to get rid of all the SPAM on the site- hope it hasn’t scared you off!!!
January 18, 2013 at 10:19 am #71458AnonymousInactiveSorry for the late updates…So the appointment with the GI doctor went well. She spent a lot of time looking at him and asking questions, even watched and listened to him eat a bottle. She was concerned at the dosage of Previcid that his Pediatrician started him on (2mg 2x a day) and said that is pretty high to start him on, but it wasnt cause for concern…it just doesnt leave much room to go up. She did not want him to take the zantac along with it because of the higher dose. She switched him from Nutramigen to Neocate (wow thats expensive), and we noticed some positive changes within a few days, but he still has good days and bad days and every day has at least one horrible feeding. He also constantly has reflux throughout the day but not to the point where he is in a lot of discomfort. He goes back in a few weeks and if he isnt much better that are recomending a GI study (barium). I really dont like that but if thats what it takes to find out whats going on I guess thats what we will have to do.
January 18, 2013 at 9:21 pm #71460AnonymousInactiveThanks for update! That is nice that the GI doctor spent plenty of time with you. Can’t find anywhere how much Prevacid your little one is getting but my GI doctor said it was ok to give 30mg of Prevacid to my 6 months old. And I think that by the time he was a couple months old he was taking 15mg.
Did you have time to ask the doctor about probiotics and enzymes? If so, what did she say?
I hope that soon your little boy starts to improve!!
January 18, 2013 at 9:24 pm #71461AnonymousInactiveOops, now I see you said the Prevacid dosage was 2mg 2x a day. Laura is the medicine expert but I have never heard of such a low dose.
January 19, 2013 at 10:06 am #71465hellbenntKeymasterwell, 1st of all it might be 2mls a day? is it a liquid that the pharmacy makes?
if so, there’s a lot of research to show that they are most likely not made correctly…
have you read Prevacid 101?
scroll to the last page of this post, (it’s actually also about other PPIs like prilosec, too)
https://www.infantreflux.org/forum/forum_posts.asp?TID=1936&PN=0&TPN=1
do you know about the different forms of prevacid?
how old is he & how much does he weigh?
I’ll help you calculate proper dose (and if you haven’t read Prevacid 101, please do- I want you to know I’m not a ‘med pusher’ and that it’s not ‘me’ who says that higher doses work and are safe…
as for the neocate- it’ll take a good 2 weeks to see the full effects of it
you can get help paying for it- read this please:
https://www.infantreflux.org/forum/forum_posts.asp?TID=2607&a
I’m glad the GI listened to you. Now you can research more, make your own decisions & TELL the dr what your baby needs
February 2, 2013 at 9:45 am #71589hellbenntKeymasterUpdate please
Your information helps others!
Do you like your ped GI? why? why not?
you can post it all here:Looking for GI: https://www.infantreflux.org/forum/forum_posts.asp?TID=660
what’s working? what’s not?
thanks!
hellbennt2013-02-02 09:46:42
February 4, 2013 at 9:30 am #71602AnonymousInactiveYes, you are correct it is 2MLs, 2x a day. It is the liquid form compounded by another pharmacy then shipped to our local pharmacy. Our son is 3 months old this week and weighs about 23lbs. I do have some good news and some not so good news. First the good news…thanks to this forum I was able to get his Neocate paid for 100% by our insurance company by going through a DME company (Apria) even though my insurance company said no when I tried to go directly through them. The other good news is he seems to be sleeping better at night time, and taking longer naps. The not so good news is he still has reflux…not as much as he did prior to the formula change and Prevacid. It has been a good 3 weeks since those changes. He had his GI flouroscopy and the doctor said everything looked good. The doc was suprised that my son refluxed with the barium because most infants he sees do not becuase its so thick. He said the my son experienced the most pain as the stomach emptied into the small intestines but did not see any issue with that area during the scan. We had a follow up appt with the GI doctor who asked us to add rice cereal to his bottle (2TB each bottle) to see if that helps and we have not seen any improvement with that, if anything he seems to be eating less. The GI said we need to give it another 2 weeks and she wants to see him again. She suggested a different test similiar to the flouroscopy (I forget the name) if things do not get better…but it sounded more invasive to me which does not make me happy. I will keep everyone updated.
February 4, 2013 at 1:19 pm #71604hellbenntKeymasterat this point, if it were ME (I can’t tell you what to do!) I would increase his dose on your own to see if it helps
as for the cereal in the bottle:this is VERY OLD FASHIONED and, most often adds MORE discomfort to these babies, as their system is already sensitive!ME, I’d read through Prevacid 101, calculate PROPER DOSE and give it to my baby- for a good 2 weeks. If there’s improvement then I’d TELL dr this is what is working.glad to read about Apria! glad to read about sleeping!April 5, 2013 at 3:48 pm #71964hellbenntKeymasterUpdate please
Your information helps others!
Do you like your ped GI? why? why not?
you can post it all here:Looking for GI: https://www.infantreflux.org/forum/forum_posts.asp?TID=660what’s working? what’s not?
thanks!
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