preemie with reflux

Cally, my four month old was two months premature due to double placental abruption caused by complete placenta previa.  She was diagnosed with sleep apnea in the NICU.  After a month long NICU stay we took her home, then took her back three days later when she stopped breathing while I was feeding her.  After a week long stay and numerous tests, she was diagnosed with severe GERD and put on Axid, and her feedings were thickened.  

We battled this reflux thing, the pain, the constant aspirating into the lungs...etc.  People really do not realize how painful and hard this monster is to deal with.  I get from other moms that "oh babies get reflux"...they say it's like spitting up, but you notice those babies don't cry in pain and arch their backs, and refuse to eat.  It is so hard to get my baby to eat.  You can see she wants to eat, but it's too painful.  We also delt with constant colic (crying all day long), gas, and constipation from the rice.  

About two months of age we switched her from formula to goat milk.  Instantly, the reflux was gone.  It was amazing.  We discontinued the rice and she was a happy baby.  We were able to get her apnea monitor off, and she no longer had problems.  Then, about a month later Cally came down with bronchiolitis for the second time, three weeks later.  The reflux had came back with a vengeance.  It is just as bad as it was in the beginning.  When I feed her, she gets a crunchy mucus sound in her back, which means it's going into her lungs.  I spent last night just holding her and crying.  Yes I'm sure things could be so much worse, and it might get better....but it's so hard to see her suffer, and refuse food.  People's attitudes of "look on the bright side" like they think they know what my child is going through is very aggravating.  I have to feed her almost every hour, because she'll only get down what a newborn eats at each feeding...and still each feeding is a nightmare.  

I don't know what to do.  I'm sad for my daughter.  My pregnancy was a nightmare, and delivery, that was worse.  I was unable to breast feed because there was so much trauma on my body that my milk never came in.  I always felt guilty for not being able to breast feed.  I tried so hard, and to this day I can't stand the sight of a breast pump.  

I'm sorry I'm being so negative.  I'm just having a very tough time and needed to talk to somebody.  Thank you for listening.  If you have any suggestions I am open to them . Thank you.  

http://sites.bundleofjoys.com/cally/videos.php?id=1408#video
Cally's Story

[energy_train]

I'm so sorry for all you are going through.  We've been through a lot with our little guy too.  He wasn't a premie but he also has severe acid reflux. He has been on adult Nexium for several months now. He's 3 1/2 years old but has had this since he was about 3 weeks old.  We lived in the hospital his first year practically. When he was 3 weeks old, we couldn't wake him up, I took him the ER and they couldn't wake him up. They admitted him for a week and did every test possible and all they said was reflux.  He has a lot of developmental delays (you can read my post which is 2 or 3 down from yours and our dialogues and the very last one posted by me is more on his story) and would be up SCREAMING at night and coughing.  It was the reflux. We didn't sleep for about a year and a half. I was taking him to the doctor every day saying "He's up coughing and screaming ALL night and somthing is wrong."  Finally, they sent us to a GI doc and a pulmonologist.  Ended up his reflux was so bad (at this time we had gone from Zantac to prilosec to prevacid) even on the Prevacid, that he had ulcers, esophagitis, etc. the pictures they took during the scope were heartbreaking.  Now I understood why he was crying and coughing. It hurt.  He doesn't talk so he can't tell us what hurts. I can tell his cry, even now, is different when something hurts but I can't always figure out what it is.  They also said the reflux has flared up his asthma so we are on asthma meds every day as well.  The list goes on and on but I wanted you to take away 2 things from this...

1.  YOU ARE NOT ALONE... and sometimes this in itself helps knowing it isn't just you going through this.  I know how hard it is to watch your child be in pain while eating (my littly guy still doesn't eat any solids) but there is still pain with liquids.  We tried thick ip and it didn't make any difference for him.

2.  IT DOES GET BETTER....you will adjust to this, and hopefully, as your daughter gets older, her reflux will get better.  Jaden started walking last summer and being upright more and moving around has seemed to help his dramatically.  In fact, I have weaned him off the Nexium.  I'm not sure if that was good or bad but we'll see.  Even if the reflux doesn't get 100% better, you will learn this as a way of life and it won't seem so overwhelming a year from now. Keeping it under control is your first priority and that shoudl in itself help a lot.  

Good luck to you and your daughter.  I know you are frustrated and I feel your pain.  It wasn't too long ago I felt like I was in that same spot.  Going to bed at night crying, crying during the day.  It does get better and maybe better isn't the right word but easier should be the word.  Take care and stay positive.

Julie

[ChitChatNine]

YOU ARE NOT ALONE as the pp poster mentioned.  That is #1 ..... and #2 is please promise me you will read this link below which is in the health pages above ...  if you do only one thing that is for "you" do this ... they are journals I wrote in the middle of the night as my son cried out in pain .. the pain I felt as a mom, the disappointment I had dealing with such pain when this was supposed to be a happy time after a very high risk pregnancy .. my baby should have popped out perfectly healthy .. .unrelated to reflux he had a bowel resection at 12weeks old... he had RSV @ 8 weeks old.  

YOU ARE NOT ALONE:
http://www.medhelp.org/health_pages/Gastroenterology/A-Mothers-Journal--You-are-Not-Alone---Written-by-a-Reflux-Mom-in-the-PreDawn-Hours--These-will-Touch-your-Heart-Forever/show/118?cid=182

Two questions that come to mind as I read your post:

1) Does your Dr know you are/were on goat's milk?  It doesn't have the nutritional components of formula for a 4mos old ???   and

2)  Maybe ask your ped GI about a product called THICK IT instead of using rice .. it will thicken the bottle feeds w/o using rice.

Please continue to post in the community.  Some of the veterans haven't stopped by in awhile .. I'm going to shout out to them along with our new members and together you will get all you need right here on this community.

Cheryl (dd 17, 15, 10 & ds 9)

[Callysmommy]

Thank you for the info...yes her dr. knows she's on goat milk.  It's superior nutrition compared to formula in my opinion.  Formula made her reflux so much worse.  I will ask about that thickener...what is it made out of?

[ChitChatNine]

I am all with you on the formula can be worse .... rice milk was the answer after 2yrs for my son .... we emulsified it with added oils.

Not sure on the thickener .. maybe corn starch .. I'll try to google it.

C~

[ChitChatNine]

Here is from the website:

What are the ingredients in Thick-It?
Original Thick-It contains modified cornstarch and maltodextrin.

Extra Strength Thick-It 2 contains modified cornstarch.


http://www.thickitretail.com/faqs.html#Anchor-What-47857


From what I understand, though, have to be careful it doesn't impede nutrion bcz it fills up the baby and/or adds calories ... going by memory here .. but two things to further look into.

Cheryl

[jeowen]

I'm so sorry to hear what a rough time you guys are having.  I remember all those crying/screaming nights from my youngest 2 boys.  All 4 of my boys had reflux but my youngest 2 were the worst.  

They had to be on combos of meds together.  Prevacid in the morning and zantac at night along with that we did carafate every few hours and a motility drug every few hours. Along with prethickened formula.  Nathan was allergic to dairy & soy protein so he was on a prescription formula called Neocate for the longest time.    He then went to an OTC hypallergenic formula.  We did a trial of regular milk for about 7 months started around the age of 3 1/2.  but then discovered that was causing IBS and uncontrollable bm's!  He's lactose intollerant.  He's now 4 1/2.

[Callysmommy]

I think the rice would be better than maltodextrin and corn starch...corn is much more allergic than rice.  I guess I am not alone with this reflux thing.  I tried weaning her off axid and it caused a rebound effect.  I'm not sure if I should take her back to the doctor's or what.  I'm so sad for her.  

[ChitChatNine]

Yes, corn can be a mj problem for many refluxers.   In my son's case it turned out to be the tiny bit of hypoallergenic caseine in the Alimentum!   The other tihng to keep in mind is that the babies grow so fast that their med dosing oftentimes needs to be incrased monthly to keep up with their weight gain .. could that be a possibility and/or with illness it needs to be temporarily upped ... we used to go up in dosing for 6 weeks after any illness and then go back down gradually .......... very frustrating and very hard as the parent to see my baby suffer.

C~

[Callysmommy]

I did some research, and this is some good info.  I changed some things around about what my baby is eating, and so far today three feeds with no reflux.  She's still on her meds but hopefully in the future we can wean her off if this thing works.  Instead of adding sugar to the goat milk...I added black strap molasses, which is very alkaline yet sweet and stevia, which is also alkaline and natural.  So far so good, no tummy pain and she likes the taste just as much.  She ate 6 oz just last meal!! I couldn't believe it.  And I put her on her belly after she eats and it gives her relief.  You'll never guess that my pediatrician recommended I let her sleep on her belly.  

[Callysmommy]

If you are like many of us today, heartburn or acid indigestion is a recurring problem. And for most of us the tried-and-true remedies are great products like Tums or Rolaids. But there is a possible problem for those of us who use these calcium carbonate containing antacids. I'm referring to the phenomenon called acid rebound.

Antacids are used to neutralize the effect of the acid in your stomach. Basically, they simply make your "stomach juices" less acidic to make you feel better. There are a number of ingredients that can be used in various antacids such as sodium bicarbonate, calcium carbonate, sodium, magnesium hydroxide or aluminum hydroxide. All have their pros and cons.

But products that are calcium carbonate containing antacids can also stimulate a release of gastrin from the duodenum and distal stomach. This hormone is mainly responsible for the stimulation of acid secretion in your stomach. Once these types of antacids are finished working in your stomach, the stomach actually begins an overproduction of acid, hence the term acid rebound!

Now, at this point there is no medical research indicating that this acid rebound is actually detrimental to your health. However, doctors are concerned that this overproduction and over stimulation of stomach acids can eventually be harmful in the long run.

But you have to wonder, if stomach acid was the cause of your problem in the first place, how are things going to improve if you'll eventually end up with more acid in your stomach! More gastric acid would also seem to indicate more heartburn.

And there is more. Some people with heartburn also experience acid reflux, where the stomach acid is actually forced up into the esophagus. This is where you experience that feeling like a chemical burn in your chest and throat. For some people this acid reflux actually becomes quite frequent and is called Gastroesophageal reflux disease. Adding more stomach acids can only mean increased problems in this area. And what can this mean for your health in the long run?

Well, you should know that there is a link between this acid reflux and a particular type of cancer. For some people, if acid reflux results in stomach acid reaching the esophagus repeatedly over the years, then there is also a possibility of a change in the lining. It is gradually replaced by a tissue similar to that found in your intestine This is known as Barret's esophagus and a small number of people who have this condition develop esophageal adenocarcinoma, a cancer which is often not curable. Obviously, not something to take lightly.

There are many people who suffer from acid reflux and want to get off the proton pump inhibitor drugs (PPI drugs). The main action of this group of pharmaceuticals is the long acting reduction of gastric acid production. These include Prevacid, Prilosec, Nexium and Protonix.

These drugs are convenient to use and can be initially useful, but many find that the side effects outweigh the benefits. When it comes to quitting them, one will find that it is not so easy.

PPI drugs are supposed to be used for a restricted period of time, however most patients continue their use indefinitely. Not only do patients abuse these drugs, but also the physicians who prescribe them. Unfortunately, there are no studies regarding the effects of the long term use of these drugs. One has to question whether the prolonged use of PPI drugs is really safe.

We do know that by reducing the production of stomach acid, the proper digestion and assimilation of food is restricted. Are chronic users of these drugs suffering from a form of malnutrition. It is important to keep in mind that stomach acid also keeps potentially dangerous intestinal bacteria in check.

When one stops these drugs, after prolonged use, the acid pumps turn on again and come back with a vengeance producing more acid than they did before. This is referred to as "acid reflux rebound". This is often such a terrible and frightening experience that most people become quickly discouraged and immediately get back on the drugs. This "catch 22" situation has proven to be a virtual gold mine for the pharmaceutical companies, who make billions of dollars in profits each year.

It is a horrible position to be in. You know you want to quit these drugs. They stop working and you are instructed to double the dose. You make an effort to stop, but it all backfires on you. Your throat burns like its on fire and your doctor tells you that if you don’t take the drugs you may develop esophageal cancer. Who wouldn’t be frightened?

Now for the good news; there are non-pharmaceutical things that one can do to survive "acid reflux rebound" and get back on the right track.

At this point there is most likely damage to the esophagus. One cannot hope to improve until the esophagus is well again.

In order to heal the esophageal damage, there are a few things to be considered. First and foremost one must temporarily change their diet. By now everyone should be aware of what foods and beverages trigger their acid reflux. Replace these offending foods with mild, easy to digest foods.

Instead of a slice of pizza with acidic tomato sauce, have a salad. Substitute that morning cup of coffee with a cup of tea.  It’s just a matter of common sense, but these changes are necessary during the acid reflux recovery period.

In order to defeat the acid reflux syndrome, one must attempt to become as alkaline as possible. Anything which has an acidic effect on the body should be eliminated. Smoking is perhaps the most acidic thing one can do. Eating too much at one time causes an over production of stomach acid. Aerobic exercise actually causes the body to become more alkaline in nature.

Drinking copious amounts of clean fresh water will help flush out the acidic toxins which accumulate in the body. A body which is properly hydrated is rarely acidic in nature. A glass of water after a meal is a good idea, but drinking much of anything with meals is counter productive. This dilutes the digestive fluids, causing the stomach to produce more acid.

Believe it or not, chewing gum between meals is beneficial. Chewing produces saliva which is very alkaline. Chewing gum after meals puts more alkalinity in the stomach to counteract the over production of acid. (sucking on a pacifier would be a good substitute for a baby!)

There are many natural ingredients found in grocery and health food stores, which can help during the acid reflux recovery period. Herbs, such as marshmallow and slippery elm have wonderful healing properties. Licorice, natural honey and aloe vera juice can sooth the esophageal lining and assist in the healing process.

There are very few cases of acid reflux which can’t be successfully treated if one understands what causes this condition. Simple things like eating slowly and chewing food thoroughly, in a pleasant relaxed atmosphere, can reduce ones chances of having acid reflux.

We do not have to be prisoners of this drug oriented "acid reflux rebound" effect. It is unfortunate that most doctors rely on pharmaceuticals as the only solution to the acid reflux condition.

With a little education regarding the causes of acid reflux and the knowledge of natural medicine, one can survive "acid reflux rebound" and go on to live a normal life. We are at the brink of a new era where the patient must sometimes also be the healer.

[ChitChatNine]

I agree with the wonderful information contained in the above post.  If you have tried all of the above along with your pediatrician and you still have issues, then there most likely is something else going on in my opinion.

Most do not know about the calcium Tums connection!!!

Most do not know about the allergy food connection!!!!

Most do not know about the long term possible effects of PPI .. there is an aritcle in our health pages on that very subj. quoting Dr. Hugh Sampson, Mt. Sinai Hospital .. he is a leading allergist!!!!

We have to remember that most who remain on the reflux communties are those whose children do not fall into the vast majority % who outgrow reflux by year one.  Those are the minority and may need further medical treatment above and beyond a reflux pill ... to see exactly what is the underlying cause.

Also, since many meds are now approved for use in infants many dr's over-prescribe them vs. listening to a parent.  But it is those who are on the communities like these who usually have "other" issues going on (not necessarily serious I may add) that keep the reflux from being solved.

Maybe add your post to the Health Pages as Testionial and/or FAQ's?  I'd like to see it up there .. you took alot of time and effort which will help so many people!!!

Cheryl

[ChitChatNine]

How is it going tonight?  Still good?  I hope so!!!

Vanilla is another option for flavoring . that works well when babies transition on to specialized formulas from regluar ones as they are older and the taste is absolutely awful.

I am going to do some searches on sugar ..........................

The one thing that comes to mind is a Fructose Intolerance but i don't think sugar is fructose .. that is more in fruit I *thnk* ???

Cheryl

[Callysmommy]

hmm....According to this page though vanilla is slightly acidic http://www.rense.com/1.mpicons/acidalka.htm...She's doing really well so far with the black strap molasses and stevia.  But I might try it if I run out of ideas.  She got a little gas but that's understood with trying a new thing.  It takes about two to three days for a new formula to take effect so we'll see how she does.  Fructose is sugar...anything with ose on the end is a sugar.  It's just fruit sugar and a "good" sugar...but only when you are eating fruit itself.  The table fructose isn't the same.  Thanks for asking...so far last night was difficult but she did eat (small meals) one meal she even downed 6oz, that was incredible.  I will keep you all posted about her new diet.  

[ChitChatNine]

The other thing for all of us to watch for with severe milk allergy is CARAMEL ... that is something to dbl. ck on the vanilla, too ....... if anybody adds it.

Is the molasses ok as far as preservatives .. kind of like the honey not for a year ?  That was one other thought as we brainstorm here.  Dark Karo syrupt always concerned me in that regard even when the docs said A-OK to put into a bottle for constipation.

I am so happy it is working ....!!!!

Keeping fingers (and toes) crossed!

C~

[ChitChatNine]

Also, I was wondering if the molasses is coating her esohpagus at all and acting as a nat'l protecterant?

[Callysmommy]

So far Cally is doing great.  She has eaten all of her meals.  WOO HOO! She still fusses after she eats but she's probably just getting used to the new food.  BS molasses does have alot of iron and that could be irritating but she used to not tolerate it at all.  She's eating great, only had one instance of reflux today, and it cleared up very fast...and she didn't cry.  Will keep you all updated.

[ChitChatNine]

YOOO HOOOOOOOOOOOOO
Doing the HaPpY  DaNcE !!!

Cheryl

[Callysmommy]

I get donated breast milk from a couple friends of mine.  She does REALLY well when she eats that.  I give her one bottle each night.  It really helps her sleep and wind down.  I noticed most babies on formula have reflux :-( I really wish I could've given her the best.  Goat milk is second best I suppose.

[ChitChatNine]

Don't feel bad at all ...................my #3 had problems on Breastmilk & ended upon Nutramigen ---

A year later, my son was born (only 14mos apart) and his surgeon Dr. (he was born with an unrelated duplication intestinal cyst that was removed via bowel resection at age 12 weeks by another fine surgeon btw)  tried to belittle me  bcz I couldn't produce breastmilk for my son (due to having passed a gallstone during a C-Section I was very sick after the C-section and my body just could not produce, let alone heal properly grrrrrrrrrrrrrrrrrrrrr)  

He nastily said to me, "Well, if you could have given him breastmilk, you wouldn't be here today" ...

yep, fired.

C~

[momoftwo378]

I am not sure if you checked out the posting labeled.....To all with Children that have Acid Reflux- dated May 21st.   See what you think

[Callysmommy]

wow I cannot believe your doctor said that to you! People just act like you're a lazy mom and you don't feel like breastfeeding.  I too had a c section, I lost alot of blood and had alot of trauma on my body...let alone being able to let down to a pump with my FIRST baby who was in the NICU for a month? I remember the nurses making comments too, it was really annoying.  I just wanted to get my baby out of there.  Sorry that happened to you.  I tried so hard to get my milk to come in but nothing.  I never got engorged, nothing.  To this day I cannot stand to look at a breast pump.  While running back and forth for a month and sleeping on the floor while getting violently ill from food poisoning, I still tried to pump for my baby.  I still deal with guilt by not being able to have breast fed her.  Fortunately there are friends that I have who had compassion on Cally, and is donating some milk.  I would have another baby just to have another chance at breast feeding! That's how bad I wanted to do it, but sometimes it doesn't work out.  Some people who haven't been there don't understand.  

I found that with using goat milk, it's hypoallergenic and non allergic...my baby couldn't even tolerate nutramigen.  Made the reflux worse believe it or not.  She's doing so well btw, eating all her feeds, and even eating more! This recipe did the trick.  Making the diet more alkaline worked....so far...and it was my fault, because I had been adding brown sugar to her bottle to sweeten it (for extra calories).  The brown sugar is very acidic, and of course it's sugar so how healthy can that be.  

[ChitChatNine]

WOW..............you are such a great, devoted mom ................stick around this community .... we will all make a difference for everybody who reads our posts who has a refluxer.

Don't look back.  Not once.  Did I mention my son is 9.5yrs old and thriving!  No allergies like his sisters; no arthritis, a tad of asthma when ill but not true asthma, plays football and is a happy kid .................the what "if's" in life .............not worth going there ever again.  Could have, should have, would have and what 'if" ... not in my vocabulary anymore.

C~

[Callysmommy]

Devoted? I wish! There's times where I just about lose it! But I'm sure alot of people do with the reflux issues.  People that have babies who don't have true reflux don't really know how much of a serious condition it is.  I also was bottle fed as a baby.  When I was born I had that staph infection from the vaginal canal.  So I spent a week in the hospital.  They didn't have the cool pumps they have today like Medela makes (medela by the way is a better pump than the one at the hospital).  My mom tried to give me goat milk but I didn't like it...so she put me on cow's milk.  I didn't have health problems until I turned 23. Then I came down with allergies, ITP (bleeding disorder) and asthma and sinus problems.  What's awesome since I gave birth my asthma and sinus problems have improved by 95%.  Sorry for my life story there.  Just getting to know you all.  

http://sites.bundleofjoys.com/cally/videos.php?id=1408#video
Cally's Story

[Callysmommy]

another update on Cally.  Only reflux ONCE yesterday during a feeding.  It did go into her lungs but didn't last for the whole feeding.  I remember when we had her on formula in the beginning, she cried in every feeding, and stopped breathing.  She's come such a long way.  

[momoftwo378]

Did you happen to check out the posting about Colic Calm?   That has been a lifesaver for my family and my son.  

[ChitChatNine]

This is fantastic to hear!

I haven't tried the colic calm as my older one is doing better finally but your info is great!

Cheryl

[Callysmommy]

Thanks Cheryl.  Cally is still doing well.  Just as soon as her reflux goes "into remission" as I like to put it...because sometimes it comes back; she started teething again.  Gave her a warm bath with olive oil and gave her teething tablets.  This is the first time today I had a break from holding her.  Being a mommy is like being a detective!

[ChitChatNine]

Is the olive oil good for the dry skin?

[Callysmommy]

oh yes.  Draw yourself a bath, then put about 1/8 cup in the water.  Just get in and do your normal bathtime stuff.  It will coat the outer layer of your body that touches the water.  It's great.  

[jeowen]

I'm so glad to hear she's doing better.

I tried pumping for Nathan.  I'd pump then feed him as he had problems with latching on.  Only he'd nearly instantly vomit. He would sometimes have blood in his vomit.  His bms were bloody and filled with mucus.  That's when the gastro did some testing and determined it was best to put him on the rx formula after trying the otc hypoallergenic formulas.  He had a dairy and soy protein problem.

And yes the olive oil does wonders for dry skin.    We did infant massage with Nathan using olive oil. Did great for his eczema.  Also still use it b/c he has really bad dry skin like me.

[Callysmommy]

wow! that stinks you weren't able to breast feed.