need help from bf moms with slow gainers

[Anonymous]

Thanks Christine I’m going to print off the PPI dosaging from the MARCI site.

[hellbennt]

have you looked into foremilk/hindmilk issues?

I’d visit your LC once again and ask about thickening…

that’s just me

[Anonymous]

Sorry Laura didn’t mean to not visit the hindmilk foremilk issue- there’s

just so much to talk about I didn’t get around to it yet…

During the first consult the LC did not think it was a hindmilk foremilk

issue for a number of reasons…

firstly the baby had yellow stools with only an occassional green one and

wasn’t gassy…

and the baby was nursing 40 minutes out of every 1 1/2 hour increment

of time, except for one three hour stretch of sleep-

She said when nursings are very frequent the fat content of the milk goes

up and the distribution of the fat is more uniform throughout the milk…

Also she saw two vomiting episodes the first visit where the baby threw

up curd and foremilk doesn’t curd so he was getting the hindmilk just not

keeping it down…still as a precaution she recommended one breast per

feeding rather than both breasts…Lastly she did not think oversupply was

the problem especially after two weeks of supplementation, and

oversupply is one of the reasons a baby can fill up on foremilk before he

ever gets to the hindmilk…

The baby was hospitalized subsequently and when he was made to fast

for an ultrasound and then again for a barium swallow the LC pointed out

how fatty the pumped milk was, even at first …

there wasn’t the normal obvious difference between the watery foremilk

that you see when nursings are more spaced apart…all the milk looked

the same from start to finish during the pumping…

Now that the baby is off the breast the difference between foremilk and

hindmilk is apparent but of course who can pump as often as you nurse a

baby…

I feel very confident at this point that the LC is right that it is not a

breasfeeding issue so much as a vomiting issue…unless the baby is

allergic then I guess it is a breastfeeding issue…

The LC is the one who told me about Simplythick but she only sees it as a

stepping stone…she doesn’t think I should settle for pumping, thickening

and bottlefeeding until every stone has been turned over in trying to get

the vomiting stopped so he doesn’t have to have thickened feeds and he

can nurse directly from the breast…

The doctor stopped the Reglan today but is skeptical about upping the

Prevacid because he thinks the halflife is 12 hours…I saw something on

the MARCI site about babies metabolizing the drug more quickly so I’m

going to look for that again to see if I am remembering that correctly…if I

can prove to him the pediatric half-life of prevacid is under 12 hours I bet

he’ll agree to prescribe more…

Again feeling more hopeful about the very long term result thanks to this

forum,

[hellbennt]

well, I’m w/ the LC, but I must tell you the vomitting may never stop– so for her to say she’d like the vomitting to stop…the meds help with the pain, they do not stop the vomitting. like I’ve said above (I think I did) that vomitting in & of itself isn’t necessarily a ‘bad’ thing- lack of weight gain is…so, if baby is vomitting and still gaining and is not in pain, well, all is ok. I hope I’m making sense? anyway, the way to find out if there’s anything in your diet that’s affecting your baby is by the elimination diet- a tell tale sign is the stools and if they’re ‘normal’ mustardy seedy stools, then most likely it’s not your diet- but I did the elimination diet anyway, just to make sure- it’s just 2 weeks of inconvenience, but it was totally worth it to us!

so, to be blunt: I’d just try nursing from the breast as much as you can and see what happens- maybe just offer the breast again a short time after a feed is vomitted and see how the weight gain goes?

as for your doctor- email dr.philips of the U of missouri & he’d be more than happy to explain everything to your dr- he’s not a MD, he’s a PharmD but he’s done extensive research about PPIs and infants and he ‘created’ the stable way for babies to get the drug (zegerid) and he’s been in contact with many doctors of parents from this board!

~laura

[Anonymous]

You could alternately email joel and ask him to send you something to take to your doc. I emailed Dr. Phillips and asked him three times for something and he didn’t reply. When I spoke to Joel he said that Dr. P. had prepared a draft document explaining the dosage. He emailed it to me, and I took it with me to my doc. Unfortunately, the doc was too arrogant to read it. Joel was working on updating what he sent me, so I’d suggest you get it from him directly. Otherwise I can email you what I have. Good luck. I hope things work out for you soon.

[Anonymous]

I hope this doesn’t sound dismissive…

its so hard to convey tone on line…

but I was a human IV for 5 1/2 weeks and my baby was only 1 oz over

birth weight at 5 1/2 weeks old…

“just put the baby to breast” sounds like the other side of the coin of “just

put your baby on formula”

With the LCs help and the scale I know it was not a lack of breastfeeding

or lack of breastmilk or an inability of the baby to withdraw the milk…

I know his problem is that he vomits so much he can’t grow…

So now i’m really down learning that acid reducers don’t do anything for

the vomiting…

The vomiting is what I need cured if I am going to be able to nurse this

baby!

Why don’t the doctors care to find out WHY the baby is vomiting?

I’ll tell you why because thickened feeds cure the weight gain issue and to

them that’s all that matters!!!

Cereal may put weight on the baby but it doesn’t grow the brain…

I can only imagine the havoc, being cereal fed, wreaks on a body

designed to be breastfed…

To me a CURE would be getting my baby growing while nursing at the

breast!

Do they tell men with ED to go to a sperm bank if they want to be fathers

or do they look for the cause of the problem and try to solve it?????

All I want is to be a mother in the normal way, by breastfeeding!!!!

OK I’ll quit crying online now

What test does the baby need to establish if he has DGE?

Thanks Laura and Lori for the tips about getting the doc to prescribe

Zegerid, sorry if I sound angry…I’m not just terribly sad and frustrated…

[Anonymous]

I’m so sorry you’re in such a bad place right now. I’ve been there, and I feel your pain. In the end I had to stop BF b/c my daughter wouldn’t suck, and it made me so sad. I really felt awful about it but in the end I did the best I could. I know how you feel about being ignored by the docs who don’t care about the cause. No one I’ve seen throughout the course of this has agreed to do testing to find out what’s wrong with my child, and that has been the most frustrating thing. Not knowing why she is sick is so awful. I really hope that your doc will listen to you and that you can continue BF if that’s what you want to do. I have no words of wisdom for you, just tons of sympathy and hugs. Hang in there. We’re here to support you.

[Anonymous]

I’m so sorry about what you are going through. I feel your pain and truly understand your frustration. I know what it’s like cry over breast feeding issues. I couldn’t nurse any of my three (for different reasons) and I could fill a swimming pool with the tears I cried over it. I resorted to pumping and feeding, so difficult. I hope you can continue to breast feed. I know you want to give your baby the very best, and you are doing everything a mom can do.

Why don’t they do something to fix the vomiting?? I’ve asked myself (and God) this question many times. I was told that the surgery to correct reflux can make things worse later on. I guess they only do it in the most extreme cases. The best they can do is treat the acid problem…..

A ray of hope….for my son the proper medication at the right dose reduced the acid in his stomach, and ultimately did reduce his vomiting. Maybe once the acid is gone, the baby feels better and throws up less. I hope this will happen for your son, too.

Laura’s right, Joel will help you if you email him. He knows what he’s doing and he’s kind enough to take the time to help us. If you could just get the right dose of PPI…

And, I know what you mean about cereal putting weight on, but for brain growth the baby really needs the breast milk. I worry about that, too. The only thing I could think of was/is to thicken only some of his feedings and re-feed him when he throws up his breast milk. It’s so terribly time consuming and frustrating, but at least I know he is gettting mostly breast milk. For some reason my baby always keeps it down the third time. Who knows why??

Is your baby gaining now? Hang in there.

[Anonymous]

Grrrrrrr! Some of these docs really make me mad. Here’s a list of journal article citations for you to take to your doctor to educate him on the need of higher, more frequent doses of PPIs for infants and children. Hopefully he won’t be like Lori’s doctor and be too arrogant to even look at it. Good luck! Email me if you need anything else: andrewsjj@health.missouri.edu.

Clinical studies showing that higher PPI doses are required to achieve healing in pediatric patients:

Gunasekaran
TS, Hassall EG. Efficacy and safety of omeprazole for severe
gastroesophageal reflux in children. The Journal of Pediatrics
1993;123:148-154.

Hassall E, Israel D, Shepherd R, et
al. Omeprazole for treatment of chronic erosive esophagitis in
children: a multicenter study of efficacy, safety, tolerability and
dose requirements. The Journal of Pediatrics 2000; 137:800-807.

Iarocci
TP, Tan H, Singer, J, Barron J, Pilzer E, Patel D, Bakst A. Proton pump
inhibitors in infants. [Abstract] American Journal of
Gastroenterology. 2005;100 (suppl.):S273.

Clinical study of pharmacokinetics of omeprazole in children

Andersson
T, Hassall E, Lundborg P, et al. Pharmacokinetics of orally
administered omeprazole in children. American Journal of
Gastroenterology 2000; 95:3101-3106.

Pharmacokinetic
study showing the relationship between lower age and higher dosing
requirments in pediatric patients: younger children require higher
and/or more frequent doses due to shorter PPI half-life. The first
author is employed at Astra (company that makes Prilosec.)

Reviews of PPI use in children: pharmacokinetics, safety, efficacy, and dosing information

Israel
DM, Hassall E. Omeprazole and other proton pump inhibitors:
pharmacology, efficacy, safety, with special reference to use in
children. Journal of Pediatric Gastroenterology and Nutrition. 1998;
27:568-579.

Specifically states that on a per
kilogram (weight) basis, children require higher doses of omeprazole
than adults due to different pharmacokinetics of omeprazole in
children. Discusses at length the use of buffered PPI suspensions in
children as a preferred dosage form.

Litalien C,
Theoret Y, Faure C. Pharmacokinetics of proton pump inhibitors in
children. Clinical Pharmacokinetics 2005;44:441-466.

Abstracts
by Jeffrey Phillips, Pharm.D., describing use of ChocoBase and
CaraCream in pediatric patients; includes some dosing information

Phillips
JO, Bettag ME, Parsons DS, Wilder B, Metzler MH. Use of flavored
lansoprazole or omeprazole suspensions in pediatric GERD. [Abstract
A1292] Gastroenterology 2000; 118: 5904.

Phillips JO,
Parsons DS, Fitts SW. Flavored lansoprazole suspension in pediatric
GERD. [Abstract] Journal of Pediatric Gastroenterology and Nutrition
2000;31:S181. [Abstract No. 707].

[Anonymous]

Thanks for the sympathy Lori…Christine thanks for the ray of hope about

the acid reducers helping with the vomiting may be some day…Thanks Joel

for the bibliography….I think I can work with this doctor, but if not I’m going

to doctor shop. Evidence based medicine is what I will demand. I think I’m

ready to take you up on the offer of pumping help Christine…

Thanks again for all the support and information,

[hellbennt]

Edith,

I truly appologize if what I said came across the wrong way–

you definitely seem to have a handle on everything! that’s impressive, especially at a time like this!

I hope the PPIs work wonders for your baby, as they did for mine!

~laura

[Anonymous]

Edith, I’d be happy to help in any way I can. Please email me anytime. I’m not an expert, but I had to pump and feed three times, so I’ve definitely been there. I’d be happy to share helpful hints, and give your encouragement, or just be someone there for you when you need to vent. ndakotarose@yahoo.com I hope your doctor works with you on the PPI dosing, or if not that you find a better doctor. Your baby (and you) deserve nothing less than the best. Good luck. I hope to hear from you soon.

[Anonymous]

I’m just going to share my experience with diet. I havn’t had a chance to read all of the replies, so please forgive me if I’m duplicating something someone else has covered.

With DS#1, he spit up a lot. Finally after having been told to eliminate dairy, I did. At first I only cut back on dairy, and didn’t read labels very well. Once I got serious about it and cut it out 100%, he stopped spitting up completely. One day I cheated with 1 tiny little mint ball (milk chocolate)….the very next feeding he started spitting up buckets again.

With DS#2, he had colic and reflux, so I immediately cut out dairy, and also a whole list of other foods. He was very food sensitive. His colic was gone within 2 weeks (it takes about 2 weeks for the gut, etc. to heal) He was still a little fussy from the reflux, but getting the food sensitivities under control made all the difference. I had cut out red meat (we saw a colic reaction to that one day after I tried some salami), citrus fruit, wheat (I’ve since discovered that’s a big one!!), my pre-natal vitamins (very sensitive to the iron in them), ….I’m sure there are a few more, but I can’t remember right now.

I tried rice cereal when he was about 5 months, but he couldn’t tollerate that. At 6 months when we were ready to try solids, he reacted to many foods. I thought he was going to stop breathing when I tried sweet potatoes. That’s when I discovered the blood type diet (“Eat Right for your type” and “Eat Right for your baby”.) They have a list of foods that you should avoid and a list of beneficial and neutral foods depending on your blood type (A, O, B, AB) DS#2 was type A (I am type O) , so I started him on the recommended foods for type A, and he did very well with them. Every time I tried an avoid food, he had a reaction. You might want to figure out what your blood type and baby’s blood type is, and try to follow that. See if it helps with the reflux. The hospital should have the records of the blood type, and your OB should know yours. You can order a test, if you can’t find out from the records (for about $10).

Let me know if you want any other diet help. I have a lot more info about foods!! My DS#1 we’ve discovered is high-functioning autistic, and reacts to foods pretty severely in the form of behavior. My DS#2 is the one who reacts physically. We just got back some food allergy tests, and DS#1 is highly allergic to eggs, and had a low reaction to just about everything else. DS#2 is allergic to almonds and honey. However, sensitivites can be there even if an allergy is not. When it’s not an allergy, it’s called an “intollerance”, and there is really no test for that. Good luck, and I’m hoping you are able to breastfeed. I stuck with it through all of the problems we had (although very challenging at times), but I’m so glad that I did.

[Anonymous]

Hello All,

Laura no need to apologize I knew I was in an emotional state and

just wasn’t ready to hear the reality that some babies with reflux never

make it to direct breastfeeding…I knew even as I was typing my reply that

what I had heard from you was truth, and I needed to deal with it, and

dealing with truth can be hard, but ultimately it’s the only way to stay

sane- so thank you for having the courage to tell me the truth and I’m

sorry if you have been having any bad feeling on my account…

Thanks MaryK for the info about allergy and blood types..I’ll google it

today…

Got the MARCI-kids PPPI info including Joel’s bibliography all printed out

and ready to take to doc…

[hellbennt]

edithelizabeth2 wrote:
I knew I was in an emotional state and
just wasn’t ready to hear the reality that some babies with reflux never make it to direct breastfeeding…I knew even as I was typing my reply that what I had heard from you was truth, and I needed to deal with it, and dealing with truth can be hard, but ultimately it’s the only way to stay sane-

Ok, now I’m confused, LOL! Anyway, chances are GOOD that you can breastfeed your baby!!!! There are WAY more sucess stories than not! Let us know how we can help!

~laura

hellbennt2006-3-20 16:45:57

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