Posted By Posting
Dec 22, 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.
Neocate question
So is it normal that I am going through a can a week????? 18-20 scoops per day is 1200 cal, a whole days worth nutrition.....Is that normal??? Seems like an awful lot!!! And it costs a fortune!!!!
Dec 22, 2008
jessicalynn
mom to 4 kids with probable
Mitochondrial Disease
http://ourbeautifulchaoticlife
.blogspot.com/
Dealing with Fundo, J tube feedings,Severe Dysmotility,Aspiration,Asthma,
FTT,CVS,Dysautonomia,Resp.Distress
Connective Tissue Disorder,
GERD,EGID,
Visceral Hyperalgesia, and more
Many meds
When we used neocate for a while, we went through about 11 cans per month, although some was wasted because he didnt drink it it. 2-3 cans a weeks would be normal. WIC would cover 9 cans a month at 20 cal per ounce. Now, Brent gets 18 cans of Elecare per month for total nutition at 30 cal/ounce, they are about the same size. Honestly, one can a week sounds like too little.
Dec 22, 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 Jessica. Your right, we go thru more like 2 cans a week, but she's still on some solids, I am trying to wean her off most foods. I have a few more questions to ask you, so I'll be posting more after, Thanks!!
Dec 22, 2008
katiesmommy
Tracey, mom to Katie diagnosed with GERD at 3 week.
/p/We use Elecare and go through a can every 3 days but we don't always do 30 cal an ounce. A can a week doesn't sound like a lot to me either./p//p/ Have you seen if you can get assistance through the company? I know that Elecare offers assistance, you might want to check it out./p/
Dec 22, 2008
molson1525
Mary & Nicholas 7-17-03 (non-refluxer)allergies, asthma on Singulair and Flovent & Aidan 1-28-07(my refluxer)Nissen Fundoplication on June 20, 2008, FTT, MSPI, DGE, ear tubes, allergies and severe GERD now currently taking just Prevacid and drinking Elecare Vanilla 1+.
We use Elecare but
We get 12 cans from our insurance a month and we use about 1 and a half cans a week but Aidan is eating table food again now. When he was solely on a liquid diet we used like 3 cans a week.
Dec 22, 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'm looking into getting gov. assistance for the neocate.
Dec 22, 2008
mollybeth
Cooper was born 12/19/07. Birth weight: 7lbs10oz. Weight as of 2/11: 8lbs9oz. 6/23: 14lbs12oz! Struggling again 12mo: 18lbs. Breast Fed exclusively, on strict elimination diet until Dec 08. MSPI as well as other food intolerances Diagnosed w/ GER at 5 days following barium swallow. Choking with apnea spells. Ftt. dx w/ Laryngomalacia following brochoscopy 1/29. Aspiration. apnea monitor until 5mo. pH probe 1/29 showed severe reflux. Sandifers Syndrome. lbrady and tackycardia. echo and EKG 2/18: Came back normal! Swallow study 2/29: some NG reflux. Unexplained seizure 4/1. Negative CF sweat test 4/4! EGD 11/19: reflux damage in esophagus. pH probe 11/19, reflux improved. Safe foods: pears, apples, peas, rice, small amounts of chicken, potatoes, and carrots.
Currently drinking Elecare vanilla 30cal/oz and breastmilk.
Meds: Nexium 10mg 2x daily. Carafate as needed, miralaxx as needed, probiotics daily
This is our first month on elecare and we are doing 30cal/oz and we go through about a can every 3 days. We're on wic too, and they only cover 9-10 cans a month, it rotates back and forth. But this month, I have had to pay out of pocket, b/c we were still on the breastfeeding plan and they couldn't switch it since I had got some cheese. I didn't even eat the cheese. It cost $4, but I ended up having to spend over $200 in formula b/c of it! I don't know what we would do if it weren't for wic.
Dec 23, 2008
jessicalynn
mom to 4 kids with probable
Mitochondrial Disease
http://ourbeautifulchaoticlife
.blogspot.com/
Dealing with Fundo, J tube feedings,Severe Dysmotility,Aspiration,Asthma,
FTT,CVS,Dysautonomia,Resp.Distress
Connective Tissue Disorder,
GERD,EGID,
Visceral Hyperalgesia, and more
Many meds

Mollybeth,Brenda, there are programs that will cover the rest of what WIC wont provide if you need more. We had CAP/C(Katie Beckett waiver) for Brent. I am not sure if Cooper or Jazzy would qualify but it is worth asking about if you need it, there are probably other programs as well.

http://www.ncdhhs.gov/dmA/medicaid/capchildren.htm

I get all Brent's formula along with all his other medical supplies through my insurance now because he is tubefed only. Brenda, I hope you are able to get some assistance, it is very exspensive, I know. Hugs!!

Dec 23, 2008
3blues21pink
DS #1 (7/05) - Just ReDX'd Refluxer! Prevacid Solutab starting 4/8/09. Lots of food and environmental allergies. Autism, Sensory Processing Disorder, Speech Delays, Developmental Delays, Severe Muscle Tone Weakness.
DS #2 (1/08) ReDX'd refluxer. Milk and soy allergies with Soy Lecithin allergies. Oat milk drinker, Rice protein powder, DHA, and vitamins added for bulk and needed nutrition. Weak muscle tone, slightly developmentally delayed, SPD confirmed.
We have a can last about 2 - 2 1/2 days around here. My son, until this week, was eating 48 - 60 oz /day because he was refusing solids. It's 1 scoop per ounce (approximately) for an 8 oz bottle. It's ridiculously expensive. I am amazed you are only using a can a week. Wow!
Check with your
doctor first!