Posted By Posting
Dec 19, 2008
b-girl
Mom to Jasmine aka: Jazz 01/24/2007
Dx with silent reflux at 8 months
FPIES, DGE, MSPI. Recently diagnosed with EC (Eosin. colitis and now Primary immune deficiency disease.
Also mom to Nathan. born Jan.20th, 2009, MPI . so far dx with reflux and has an extremely sensitibe GI system. Also dx with primary immune deficiency disease.
Gi called us back...
Actually, I called them again which makes it everyday this week that I've called....anyways, I am not very happy.

First they've increased Jazzy's nexium, to 10mg twice a day. Ok, so this MIGHT help, but her patteren is that she breaks through her PPI's every 3-4 months.

Then they want to stop the motilium and try erythromycin.......I don't think this will make much of a difference, execpt maybe increase her diarrhea...

Then they want to add Zantac at night, which we've tried twice before and both times she's thrown it up.

Both my GI and Ped are now off for the holidays, so this is where we stand.

I've figured out that she really cannot tolerate much solids, no protein or fat, just a few fruits, carrots, broccoli and some toast or potato. She does better on a liquid diet. So I am glad to have started the neocate.

Does anyone know how much she should be taking for complete nutrition? I'd love to know and won't be talking to her Ped until Jan. 2009...

Thanks for reading this far ladies.

Dec 19, 2008
engin117
My name is being used fraudently to ill represent me. Please be cautious of any information you receive with my name. including engi.nowaira.net, engi@nowaira.net, Engi@nowaira.us, anything from anyone claiming to be Engi Nowaira online. Otherwise, I will be representing myself in person so that everyone will have opportunity to identify me in person.
My previous drivers license was also stolen. The new one has extra security features on it.
I am sorry you were left hanging just like that. We were done the same way last year and did not appreciate it either.

How many calories per ounce are you mixing it and what is her current weight?

I found a calculator for an adult, but can't find a pediatric one.

1.) Calculate the minimum number of calories you need by multiplying your current or desired weight in pounds by 10 if you're a woman, 11 if you're a man. This number represents your basic calorie needs.

So since Meggy is 19 pounds, she would need 190 calories to maintain her weight if she were just sitting around all day.

2.) Calculate the number of calories required for your activity level (see tips, below) by multiplying your basic calorie needs (the calculation from step 1) by your activity level - 20 percent or 0.2, 30 percent or 0.3, 40 percent or 0.4, or 50 percent or 0.5. The resulting number represents your activity-based calorie needs.

I would say Meggy is moderately active so I multiply the 190 x .4 = 76 +190=266 calories to maintain her current activity level and current weight.

3.)Calculate the number of calories your body needs for food digestion and absorption by adding your basic calorie needs and your activity-based calorie needs (the answers from steps 1 and 2) and multiplying this sum by 0.10. These are the calories you need for digestion.

So I say 266+76=342x0.10=34.2+342=376.2

Megan needs 376.2 calories to maintain her current weight.

If I want her to gain 1 pound every 2 weeks, she needs an extra 250 calories a day. So, for Megan to gain 1 pound every 2 weeks, she needs to have about 576.2 calories a day, give or take a few.

This was performed by a calculator at Ehow

The calculator is meant for an adult, so I am not sure how accurate it would be for a toddler.

Hope something here helps.

Dec 19, 2008
emibug
Kathryn, Pager Volunteer and mommy to Emily Mia 02/04/07. 3 years old with GERD. 30mg Prevacid and Pepcid AC. Mylanta needed for flares. Failed prilosec med switch. Tried and failed many med weans but GERD and pain are well controlled. Functional constipation. Reoccurring SBBO. Suspected IBD or autoimmune disease. Resolved issues: MSPI, CSID (acquired), Stage 2 kidney reflux, Chronic diarrhea.
Audrey Meadow 06/20/08. born 34/35 weeks. Still b/f and eats everything! ftt and chronic constipation.
emily seems to do worse with fat too, it isn't a malabsobtion thing, i don't think, i think it just hurts her belly. she loves broccoli too but it is really gassy for her. emily can't do reglan and we were not allowed to try erythromycin b/c of her kidney. but if you try it i really hope it works better. I am not sure but i would think that minimally 20 ounces of formula per day but i would always shoot for more. I don't know, could you figure it out calorie wise? do you know her minimal calorie requirement?
Dec 20, 2008
b-girl
Mom to Jasmine aka: Jazz 01/24/2007
Dx with silent reflux at 8 months
FPIES, DGE, MSPI. Recently diagnosed with EC (Eosin. colitis and now Primary immune deficiency disease.
Also mom to Nathan. born Jan.20th, 2009, MPI . so far dx with reflux and has an extremely sensitibe GI system. Also dx with primary immune deficiency disease.
Thanks ladies.. I'll check out the calculator. Kat- did carafate help emily at all?
Dec 20, 2008
jedd'smommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
Zantac taste really gross BTW...EEWWWW, very yucky. LOL

We were always todl tha tJedd needed to take aorund 120 ish clas per kilogram of body weight. That was when he was FTT though.

A "normal" child should take in about 90-100 clas per kilo. of weight.

It's all relatve though. If a child is less acitve they may gain too much on that recommendation. And if a child is more acitve they will need more than recommended.

I would look for a good dietician and they can really do some good with helping with the diet amounts for intakes.

That was the best thing we did with Jedd. I also kept and still keep a food diary when I log all o fhis oral intake for each day and how many calories he takes in during a 24 hour period.

From food logs and then weight checks we knew if we needed to increase or decrease. (HAHA decrease, we never needed to do that.)

It was a very helpful way to see how many calories Jedd needed specifically.

Dec 21, 2008
emibug
Kathryn, Pager Volunteer and mommy to Emily Mia 02/04/07. 3 years old with GERD. 30mg Prevacid and Pepcid AC. Mylanta needed for flares. Failed prilosec med switch. Tried and failed many med weans but GERD and pain are well controlled. Functional constipation. Reoccurring SBBO. Suspected IBD or autoimmune disease. Resolved issues: MSPI, CSID (acquired), Stage 2 kidney reflux, Chronic diarrhea.
Audrey Meadow 06/20/08. born 34/35 weeks. Still b/f and eats everything! ftt and chronic constipation.
yes actually the carafate helped emily a lot, i am not sure exactly why or what was wrong with her that it made her feel better, but once we ran out two weeks later she was back to diarehea and pain again.
Check with your
doctor first!