Amelia.

[Anonymous]

My daughter Amelia was born 5 weeks early on 12-7-12.

She spent a week in nicu and after she came home she had an “episode”. Not sure if it was apnea or brady but during a feed she went limp and I had to use CPR to get her back. We took her to the ER and they diagnosed her with reflux after doing a swallow test.

We learned valuable information that day on how to feed her properly and reduce the chance of another episode. She was put on Pepcid and Carafate and was sent home. We later saw a GI doctor who put her on Lansop and took away the Carafate. Since Monday, when we started the Lansop she has gotten progressively worse. She is screaming in pain and it’s really hard to watch. She arches her back and moves her head to the side, almost like having a seizure.

And as I was registering for this website she had another brady event. We are on a heart monitor now so we actually knew it was happening. She is OK now.

I have to get the lansop compounded since medicaid won’t pay for it any other way and I read about the potency, etc. But I have a 30 day supply and can’t get another for 30 days, so if it’s potency is questionable she’ll just be in increased pain in a couple weeks which I don’t know how I’m going to handle. Tonight we gave her a dose of the pepcid and we may just keep giving it to her until the lansop kicks in.

The pain is horrible, watching her squirm makes me feel sick myself but the biggest concern is when that alarm goes off and I look at her and she’s limp and I have to rouse her. It’s terrifying.

I don’t know what to do. tonight I called my doc’s exchange and am now waiting for a nurse to call back. I almost want her to go back to the hospital where I know she’ll be safe.

[hellbennt]

welcome!

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 pepcid, 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.

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…

since 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 pepcid by weight.

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

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

[Anonymous]

Oh dear! I am so sorry your little one is suffering so much. 🙁 I am sure that having her go limp is very terrifying. My children never did that and yet I was so worried with my first one that he would die in the night. I know just how you feel when you say it makes you feel sick to watch your little one be in so much pain. I too just wished that my child could be admitted to the hospital until they could figure out why he screamed in pain for around 20 hours a day and had blood in his stools. In the end, we found out that he could not tolerate any kind of dairy at all.

Hopefully later tonight I will have more time to give you some of my thoughts, but for now I just wanted to tell you how badly I feel for you. I’m sure you went through a lot with having a preemie and now to have this wrong too is surely really hard. (((HUGS)))

If you have time, you could take a look at my blog (see signature). I think you would find some helpful information on thereHappy Mom2013-01-12 18:43:29

[Anonymous]

Thank you guys so much, does anyone have information on dr phillips? I am about an hour away from the university and if he could see Amelia that would be amazing.

I am going to talk to my ped gi doc, he is very understanding. I may be able to fax him if I get to a machine.

Thank you guys once again.

[Anonymous]

I am sorry but I personally don’t have any info on Dr. Phillips.

I reread your post again and my heart truly aches for you. I have heard of numerous other parents that have to endure their babies stopping breathing due to reflux and I just can’t imagine how scary it would be. My boys choked a lot and I thought they would stop breathing but they never did.

I want to share a little info with you about what we found to help our boys the most. I am not at all presenting it as a cure-all but many babies and adults too with digestive problems have found some help and relief in the same way we have.

A couple of years ago 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.

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. A few days ago about an hour after my boys had eaten breakfast, they wanted a snack. Although I wouldn’t normally let them, for some reason this time I did and gave them some yogurt. I thought they would be ok without another pill beings it was pretty close to when they had had one at breakfast. Soon after they ate the yogurt they went outside to do their chores. Within about 2 minutes Quinton came inside crying that he was sick. I could tell he was in obvious pain as he curled up and laid on the floor. I quickly went to find the barf bucket as I thought he must have the flu. But in less than a minute Jackson came in saying he was sick. Then it hit me… the pill from breakfast was obviously used up already…. so I gave them each another Digestive Health pill. Within 10 minutes they were fine and headed out again to do their chores.

The brand of probiotics and enzymes we use is called “Digestive Health” sold by http://www.corehealthproducts.com/products/digestive

If you decide you want to try probiotics and or enzymes but want to use a different brand, you can go to my page (on my blog) 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 titled “Side effects of probiotics and enzymes”.

Some doctors are not extremely knowledgeable about probiotics and enzymes because it’s not something they are generally taught a lot about in medical school. But I would still ask your doctor about it and see what he/she says.

[Anonymous]

wow, thank you for all that information! I am going to check out those websites. How old were your children when you put them on it? My baby is only 5 weeks.

I know from the swallow test that her LES is immature and letting food get into her esophagus. Would probiotics help that too?

[Anonymous]

When I first started giving my boys the Digestive Health, they were ages 2 and 4 but I started taking them shortly before I became pregnant with Shiloh and while nursing so she was getting them all the time. Of course when she was first born I was SO petrified that she was going to have problems like my boys that whenever she cried for more than one minute I gave her a little of a pill. So the first time she had them directly herself she was 2 weeks old. Your child is not too young for them but I would certainly start with a very low dose and very slowly. Go to my page titled “pill dosage” to learn more. http://help4acidreflux.wordpress.com/dosage/

Here is something that I just wrote to someone else that was wondering about the immature LES….

Although it can be true that the “muscle” at the bottom of baby’s esophagus is loose or not fully developed, and it causes babies food to come back up, often times the truth is that when there is too much acid in the stomach it forces that flap/muscle to open up to let the acid/food back up. When this acid/food travels over the esophagus it will kill the probiotics which are the protective coating that lines the esophagus, stomach, and intestines. When this lining is poor or not there, then the esophagus will become raw, inflamed, and painful.

Probiotics aren’t going to make the LES become more mature but they could help ease the pain in the esophagus from the acid reflux/food that is coming up and irritating it.

Here is a link to an article about preemies with reflux and the side effects of medication. It also tells how probiotics can be beneficial. http://www.inspire.com/groups/preemie/discussion/for-those-with-babies-taking-ppis-prevacid-zantac-etc/

[Anonymous]

P.S. I like that article about the side effects of drugs but personally feel that it is a little too “strongly opinionated”. So take what you want out of it. 🙂

[hellbennt]

my baby had an immature LES and I didn’t try probiotics. BUT, knowing what I know now, YES, I do believe I would have tried them! we were DESPERATE.

what DID help were a high enough dose of PPI and ‘the products’

as for Dr. Philips, I’d go to the U of Missouri website and try to find him. He’s a PharmD, so he wouldn’t see your baby per se, but I sure would take his recommendation on who to see!!

look the the Looking for a Ped GI link, there might be someone he’s recommended listed there?

are you breastfeeding or formula? if formula, which one?

you can do this! as for a fax machine, you might have a local business that lets you use theirs and also some copy places, like Kinkos, have them for you to use…

my baby had apnea episodes, too! it’s scary!

he was put on a monitor. those things are LOUD.

the seizures you’re mentioning sounds like Sandifer Syndrome-

there’s a link from GROUPIE INTRO

Groupie Intro is looong, but keep refering back to it, like a table of contents.

USE the Sandifer symptoms to SHOW you know what you’re talking about. when my baby was on proper dose and form of PPI they lessened/ disappeared. when they would appear again, we’d know it was time for a med increase. it was THAT obvious.

you can do this!

[hellbennt]

any updates?

[hellbennt]

Update 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!

[Author]

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