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pharmcat2000
Mom of 2 + 1
Member since 10/05 7395 total posts
Name:
Catherine
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Update on Erin - Just about out of options... UPDATED on 8/18
Not sure who remembers, but my DD has Failure To Thrive. She is not gaining enough weight because she is spitting up too much. So last week the doc added Reglan to her medications, hoping it would help keep more formula down. Well in 6 days she only gained 2oz, when she should have gained almost 6oz. So the doc said that we are just about out of options and that she will almost definately need to have a feeding tube put in. When he figured everything out, it was only about 3 full days that she was on the new medication at the right dose, so he gave her 5 more days -- until Monday. If she hasn't gained enough by then, she is going into the hospital for the feeding tube. I thought she was doing better, but now today she is spitting up a TON again. I'm so afraid my little baby is going to need this tube come Monday. I'm so afraid for her. I really just don't want her to get it. I know she is small, and hasn't gained a whole lot of weight, but she also isn't "skinny" or emaciated looking. I just don't know of they are jumping the gun on this tube. I just don't know if letting them do it is the right thing for her. I truly feel like it is not the right thing, but I'm afraid that if I refuse it and I'm wrong that I will be hurting her. I'm so afraid right now. 
UPDATE:
First of all, WOW is all I can say for all the advice, good wishes, suggestions and prayers that everybody has given me. I really appreciate it. 
She gained 3ozin 5 days. They weren't thrilled with it, as they said they really want her to gain an ounce a day so that she can begin to get back to where she should be on the growth curve. But it was enough to give her another week to try to gain.
I asked about a ton of possibilities including malabsorption syndromes and metabolic abnormalities. We're checking her for everything. I had gone a few weeks ago for a 2nd opinion at Schneider Children's Hospital. The doc we saw asked who we were currently seeing and when I told him, he said he knows our doc and that he is good. After examining my DD he said that he agrees with everything my doc was doing and recommending. But of course I am questioning whether it was a totally unbiased opinion since he does know my doc and said that he would call him to give him the report of my visit.
I also expressed my reluctance for the feeding tube since my DD is meeting all her milestones and appears healthy, just small. They said that she is ok for now but that they don't want to wait until she starts missing milestones to start doing something about lack of nutrition.
We changed her formula to Elecare and will give that a try for a bit. I'm also going to start feeding her cereal from a spoon (a few weeks early) but it might be enough to add weight to her and to her formula to keep it down better.
I'm also going this week for infant massage/craniosacral therapy to help reduce reflux.
So of course I'll be on pins and needles for the next week but I hope she start to turn things around. Supposedly reflux is supposed to start improving around the 4 month mark so I'm hoping all I need to do is buy us a couple of extra weeks until she starts improving. 
Again thanks to everybody who reponded, sent me FMs and just kept us in their thoughts. It means more than you know!
Message edited 8/18/2009 12:27:05 AM.
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Posted 8/15/09 7:54 PM  |
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Diana1215
Living on a prayer!!!
Member since 10/05 29450 total posts
Name:
Diana
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Re: Update on Erin - Just about out of options
First off, I'm so sorry that you have to go through this.
How old is she and how much does she weigh?
Is this your peds opinion or have you seen specialists about it?
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| Posted 8/15/09 7:57 PM |
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Re: Update on Erin - Just about out of options
Does she have a dairy allergy that is spitting up so much?
If in your gut you don't feel it is right then I would get a second opinion. I always felt that as long as my kids gained weight it didn't matter how much the gain was.
I'm sorry you are even going through this
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| Posted 8/15/09 7:59 PM |
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shazza211
My life is complete
Member since 9/07 1580 total posts
Name:
Sharon
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Re: Update on Erin - Just about out of options
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| Posted 8/15/09 8:02 PM |
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Re: Update on Erin - Just about out of options
I'm sorry you are going through this!
My son has had some medical issues. From experience I can tell you, If you don't feel it's the right thing, it probably isn't.
We have a nutritionist from EI, but I know she does private pay also. She is very good. FM me if you would like her info.
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| Posted 8/15/09 8:02 PM |
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dawnygirl25
Growing up soo fast..
Member since 1/06 14917 total posts
Name:
Dawn
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Re: Update on Erin - Just about out of options
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| Posted 8/15/09 8:03 PM |
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pharmcat2000
Mom of 2 + 1
Member since 10/05 7395 total posts
Name:
Catherine
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Re: Update on Erin - Just about out of options
She is 3 months and weighs 8lbs 13oz. She was 6-8 when she was born.
We've been seeing a pediatric GI specialist weekly since early July. I also took her for an evaluation at Schenider's.
They've been checking her stool for blood about every other week, looking for a milk allergy. It has always been negative.
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| Posted 8/15/09 8:05 PM |
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CkGm
They get so big, so fast :(
Member since 5/05 13848 total posts
Name:
Christine
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Re: Update on Erin - Just about out of options
I am sooo sorry for what you are going through with Erin. Please trust your gut and get a second opinion. She could just have severe reflux and need a different type of treatment or an extreme allergy of some kind. I would trust your mommy gut and go see another specialist. Hang in there
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| Posted 8/15/09 8:05 PM |
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mamasita27
OHANA
Member since 8/07 5974 total posts
Name:
MB
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Re: Update on Erin - Just about out of options
So sorry you are dealing with this! Many for you and baby Erin !
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| Posted 8/15/09 8:07 PM |
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Re: Update on Erin - Just about out of options
This might be a stretch, but I am going to throw it out their. What about an allergy to the bottle nipples she uses? Maybe a parasite in her belly?
2.5lbs doesn't seem like a little bit of weight to me in 3 months. DD was bigger at birth but she always had a slow weight gain.
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| Posted 8/15/09 8:07 PM |
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Porrruss
Nya nya nya
Member since 5/05 11618 total posts
Name:
Amy
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Re: Update on Erin - Just about out of options
First:
Second: I wanted to pass along my coworker's website. She is a "reflux mom" as both her daughters had SEVERE reflux (I think 1 needed surgery and had failure to thrive). She started the website as a source of support for parents with children who have GERD (as well as GER).
My girlfriend who has never physically met Jan emailed her and found her to be an incredible source of comfort as well as advice. I had minor GER issues with Eliza and learned SO much from her (I'm so lucky to be able to work with her!). She recently wrote a book on reflux, but her true love is actually talking with and supporting parents with children who have severe reflux.
There are also links on her site to another GERD messageboard.
Refluxmom.com
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| Posted 8/15/09 8:10 PM |
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Jodee
I love my girls
Member since 11/08 1510 total posts
Name:
Danielle
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Re: Update on Erin - Just about out of options
I am sure this has been thought of - and mentioned - but are there second opinions that can be sort after??
I will pray that you baby gains whats needed and avoids the feeding tube....and for strength for all of you :)
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| Posted 8/15/09 8:14 PM |
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BaroqueMama
Chase is one!
Member since 5/05 27530 total posts
Name:
me
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Re: Update on Erin - Just about out of options
Is it an issue with the valve at the top of her stomach? (I don't remember the real term). They have surgery to repair that if so. Not that surgery is great, but a feeding tubes seems rather severe. But I don't know much about it. I'm so sorry
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| Posted 8/15/09 8:20 PM |
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hbugal
Lesigh
Member since 2/07 15928 total posts
Name:
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Re: Update on Erin - Just about out of options
Posted by prncsslehcar
Is it an issue with the valve at the top of her stomach? (I don't remember the real term). They have surgery to repair that if so. Not that surgery is great, but a feeding tubes seems rather severe. But I don't know much about it. I'm so sorry
You're thinking of Pyloric stenosis. Im thinking that they would have already ruled that out. Most infants with Pyloric stenosis have projectile vomitting and are usually boys...
Does she eat well and then spit up? Or is she a slow eater as well? Have you tried the "old time" reflux fixes of burping after every ounce and adding rice cereal to her bottles?
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| Posted 8/15/09 8:29 PM |
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alexlynn7
Big brother to be!
Member since 9/06 6314 total posts
Name:
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Re: Update on Erin - Just about out of options
i'm so sorry you're going through this
i agree with the others - if you're not 100% sure that this is the right thing for your little girl, i would seek out another opinion.
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| Posted 8/15/09 8:33 PM |
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jinglemommy
I <3 my boys!
Member since 12/06 1389 total posts
Name:
Kelly
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Re: Update on Erin - Just about out of options
Is she on extra calorie formula? My first was (preemie) and it helped him gain. The only time he came off of it was when we were switching him to milk. I used to make it with the powder formula. Also it is a little thicker so a little easier to keep down.
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| Posted 8/15/09 8:43 PM |
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Lucky09
2017!
Member since 1/06 7537 total posts
Name:
DW
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Re: Update on Erin - Just about out of options
I am so sorry I would definitely seek a second opinion if you haven't already.
for you and your little girl. I hope she doesn't need the feeding tube. Poor thing.
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| Posted 8/15/09 8:44 PM |
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headoverheels
s'il vous plaît
Member since 6/07 42079 total posts
Name:
LB
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Re: Update on Erin - Just about out of options
no advice, just
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| Posted 8/15/09 8:45 PM |
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Blissful
Ultimate Expression of LOVE
Member since 6/08 4985 total posts
Name:
Maria
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Re: Update on Erin - Just about out of options
My Alexa was born 8 lbs 4 ozs... TODAY at 6 mos old she weighs 12 lbs 12 ozs.
THat is a 4 lb 8 ounce weight gain in 6 mos.
Your story sounds like mine... I've sent you an FM
PLEASE call me!!!
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| Posted 8/15/09 9:50 PM |
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ChrisDee
My Girls
Member since 11/06 9543 total posts
Name:
Christine
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Re: Update on Erin - Just about out of options
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| Posted 8/15/09 9:51 PM |
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dm24angel
Happiness
Member since 5/05 34581 total posts
Name:
Donna
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Re: Update on Erin - Just about out of options
Do they think its reflux? HAs she been on any meds for that yet? And is she on special formula?
Im so sorry your both going through this....I wish I had more advice, Ic an sense how scared you are.
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| Posted 8/15/09 9:53 PM |
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InShock
life is good
Member since 10/06 9258 total posts
Name:
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Re: Update on Erin - Just about out of options
How long would she need to be on the feeding tube for? If it's short term, perhaps it's the boost her little body needs to begin to gain weight.
Lots and lots of hugs and prayers!!!
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| Posted 8/15/09 9:58 PM |
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Eireann
Two ladies and a gentleman!
Member since 5/05 12165 total posts
Name:
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Re: Update on Erin - Just about out of options
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| Posted 8/15/09 9:58 PM |
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pinkandblue
Our family is complete, maybe
Member since 9/05 32436 total posts
Name:
Stephanie
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Re: Update on Erin - Just about out of options
I am so sorry you are going through this
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| Posted 8/15/09 10:02 PM |
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Bridex100
Two Under Two Mommy
Member since 3/08 10420 total posts
Name:
Momx100
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Re: Update on Erin - Just about out of options
DS was failing to thrive due to his heart, which required 2 surgeries. At 2.5 months, right before his second surgery, he also weighed about 8 pounds and was off the chart. DS just woudn't eat or would eat very little. It was extremely stressful. Lucklly DH works at a hospital and has decent benefits and we had pedi nurses come visit who would help us feed him. I watched them borderline force feed DS, which was also painful to watch. It's been 2 months since his surgery and DS has doubled his weight.
DS had to get a feeding tube 3x. Honestly it is hard to hear your DC scream when they put it in but it isn't a big deal once it is in. I sobbed outside the room while the nurse put it down DS's nose. I think it is far harder for the parents than for the child. 
I hope that they find out what is wrong with your DD so they can fix her. Don't lose hope.
I asked DH real quick and described your DD's symptons and he said it may be Tracheoesophageal fistula.
Message edited 8/15/2009 11:00:40 PM.
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| Posted 8/15/09 10:25 PM |
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