Infantreflux.org | Frustrated and Tired

This topic has 8 replies, 1 voice, and was last updated 14 years, 2 months ago by hellbennt.

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August 2, 2012 at 1:37 am #70600

Anonymous
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My daughter is 6 weeks old and has been in pain for most of that time… I am confused, frustrated and exhausted from so much conflicting information and spend hours a day researching for an answer.. I am hoping for some guidance here if possible..

She was diagnosed with MPSI after blood in her stool and has been on Elecare for one week now which has cleared up the diarrhea and blood.. We are still struggling with possible gas on and off but her stools are much better..

She was also diagnosed with reflux at about 3 weeks old and given Zantac. We saw a little bit of improvement but not much… Surprisingly, we saw the most improvement on Zantac and Alimentum RTF but the Alimentum was causing the bloody stool and diarrhea.

The GI just saw her for the first time on Monday and said to stay on Elecare. He switched her to a Prilosec compound which I just had filled at a compounding pharmacy yesterday. They said it was good for 30 days but I am questioning that as I research. It is also flavored… He also recommended thickening formula using rice cereal..

As soon as we started rice cereal on Monday, she started acting in a lot of pain with maybe both gas and reflux. On Tuesday, I switched to oatmeal instead and still no change. She has been crying and in the most pain we have seen her in. She is exhausted and can’t sleep because of being woken up with pain.

At this point, I am giving her the Prilosec and have stopped thickening her bottles completely.. I don’t know what is causing her pain – the cereal, reflux, gas??

I know I am all over the place – I guess my questions are whether or not I should be giving her Zantac still while we wait for Prilosec to kick in? Also, would cereal cause her this much pain? Should I stick to not thickening the bottles? Is this compound even going to be effective for her or should I request something else? If so, what medication should I request? Called GI today but didn’t get a call back.. Hopefully I will hear from him tomorrow 🙁

August 2, 2012 at 4:14 am #70605

Anonymous
Inactive

Well, you sound just like me… 5 years ago!! Searching and hoping for answers and wishing my baby could just be well! I am so sorry you and your little one have been struggling. HUGS!!!

In a nutshell I will tell you the answers I eventually found. You can read my blog (see signature) for details.

My son had blood in his stools, cried and screamed in pain for hours from stomach pain, gas, and reflux. He took Prevacid and drank Nutramigen. When he was 4 years old he was still struggling. 🙁 And then I discovered the root cause of all this!! His pancreas was not making enough digestive enzymes to break down his food. In turn his stomach made excess acid to try to break it down. This acid was pushed up into the esophagus and down into the intestines. It killed off much of his probiotics which are the good live bacteria that coats and protects the entire digestive tract. Without this protection the esophagus and intestines became raw and inflamed. This caused bleeding and pain.

So, by taking a probiotic/enzyme supplement his digestive problems were reduced almost 100%. Today he eats any foods that he wants to and is able to break down and digest them. 🙂

I can not promise that this is something that will help your child but many babies have been helped with it. It is something that isn’t going to hurt your child and it can be given right along with the other meds and formulas. So it just might be worth a try for you.Happy Mom2012-08-02 04:16:37

August 2, 2012 at 10:36 am #70607

hellbennt
Keymaster

yes! give the zantac, too!

telll me how much baby weighs & I’ll help you calculate!

make sure to give zantac 4hrs seperate from prilosec

please research– your prilosec compound most likely isn’t properly made

please take the time to read/skim/scroll through

https://www.infantreflux.org/forum/forum_posts.asp?TID=853

I have a LOT to say and most of it’s there, the link (above) is called ‘groupie intro.‘
it’s looooOong but TRULY will help you!

Refer back to it;You’ll find yourself coming back to it!

and: PLEASE 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

August 2, 2012 at 4:02 pm #70615

Anonymous
Inactive

Thanks for the response! I will read those… The compound was made with the prilosec, sodium bicarbonate 9%, stevia, and flavoring according to the pharmacy…. They are still insisting that it is a 30 day stable life when I called them this morning but did admit that flavoring reduces it.. I don’t want to wait out the 2 week period for Prilosec to take effect and end up giving her something that isn’t even effective 🙁

She weighed 8 lbs 10 oz on Monday so probably closer to 9 lbs now.. she has been gaining almost a pound a week which seems like a lot to me.. the GI thought so too but his solution of putting in rice cereal to make her fuller longer didn’t work.. I work with a nutritionist who thinks it’s fine.. who knows?

August 2, 2012 at 4:42 pm #70616

hellbennt
Keymaster

I would NOT want to add rice, not because of weight but because she already has an immature/sensitive digestive system & why add more stress to it?

as for the pharmacy, yes, they will defend their compounds…

there have been studies (and mothers HERE speak from experience) that show that compounds done at the pharmacy are NOT STABLE. I’m sorry.

you do NOT have to take my word on this!

please research all you can!

https://www.infantreflux.org/forum/forum_posts.asp?TID=6026

August 2, 2012 at 9:20 pm #70621

Anonymous
Inactive

Would you just do formula without thinner or would you try something like Simply Thick? I figure I will do nothing for now until we give it a couple weeks..

I have decided that I don’t want to put my hope in this compound… If I am waiting it out a couple weeks to give it a chance to work, I don’t want to be giving her something that is possibly ineffective.. I have emailed the site that sells the mixing buffer and am waiting for a response… does it give you all the information on mixing and dosing with it also? I am nervous to do it myself and don’t want to cause her any harm..

August 3, 2012 at 10:58 am #70624

hellbennt
Keymaster

you will NOT cause any harm! seriously!

they will help you!

WE used the product, when it was sold by a different company- but same thing- mixing it ourselves

simplythick is ok, but I wouldn’t use a thickener unless you’ve been told to after a SWALLOW STUDY.

THIS is what determines the the need for thickening…

It’s a study where the actual mechanism of swallowing is looked at and also to see if baby is aspirating any liquid into her/his lungs. THEN you are prescribed an EXACT consistancy of a thickener…

yes! give the zantac, too!

telll me how much baby weighs & I’ll help you calculate!

make sure to give zantac 4hrs seperate from pr ilosec

hellbennt2012-08-03 11:00:25

August 3, 2012 at 6:10 pm #70629

Anonymous
Inactive

8 lb 10 oz last Monday so probably add a few oz

August 3, 2012 at 7:47 pm #70630

hellbennt
Keymaster

ok, well, I’ll calculate for 8lbs 10 oz

please don’t just take my word on this!

read here:

Zantac dosing– my/other’s question (has axid & pepcid doses, too):

https://www.infantreflux.org/forum/forum_posts.asp?TID=8288&PN=1

so:

8lbs 10 oz = 3.910 kgs

I’ll round up to 4 kilos

maximum dose of zantac by weight is 10mgs per kilo, so

4 x 10 = 40

that’s 40mgs of zantac, total for the day, that you can administer to your baby

your bottle of liquid zantac says 15mgs/ml

this means that for every 1ml of liquid you give, there’s 15mgs of the medicine zantac in that 1ml of liquid

so you take the 40mgs and divide by 15 = 2.7

that’s 2.7mls, total for the day, of zantac you can administer to your baby

you can give in 2 or even 3 ‘uneven’ doses, with the higher portion given at a more difficult time of the day, typically that’s in the evening/night
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