Posted By Posting
Aug 05, 2008
michelle&aurora
Aurora born March 17, 2007
3 years, 8 months old
Weighs 25.8 lbs
8 lbs 11 oz at birth.
Recovered Chronic Projectile Vomiter
Prevacid Free since September 08
Egg allergy diagnosed Jan 26/09
Has a Pectus Excavatum
Has an Epipen
Don't feed her....
soup every day for lunch, don't feed her right before bed, don't feed her if she wakes at night, don't feed her the bottle, let her do it herself....if she misses a few bottles, it's no big deal.....this is what I was told at the feeding clinic today.

So what if she's only 18lbs 5 oz, so what if she's only gained 2 oz in two months, all the while eating soup, eating at night, and mommy making sure she drinks her bottles......

She's going to lose weight!!!! I know it's important for her development to start drinking her own bottle, and to try new things (y'all KNOW I have tried EVERYTHING) but it just seems so counter-intuitive. I am going to need strength for this.

As far as the choking, they told me what you gals told me...just a piece or two at a time. She did well today. She ate a couple pieces of banana!!! They think once I take her off formula she is going to be hungry and want to eat. It's like they don't LISTEN!!!!!! She can go all day without eating and drinking and not give a poop!!! Ugh. I think I'm about done with them. I understand the concept of positive reinforcement, and that's all they care about and all they can offer us. Sorry to vent again. I'm just sad she didn't gain much weight, even after the good week we had last week, and eating again at night. :(

Aug 05, 2008
ceramom
Sarah
mom to Mila 2-20-2007
and Robby 4-22-2004
Mila is on Peptamen JR 30 cal by NG tube. Open Heart Surgery 2/08/08. Captopril, Zantac, Losec, Lasix.
Michelle, you sound so upset. I am so, so sorry you are going through this.

This is probably the worst Mommy thing to do EVER ( I will not win mother of the year ) but... can you do exactly what they say and have her in for a weight check / update in 1-2 weeks? So they can see exactly how poorly she'll do? You'll have to keep an eye on her hydration, and she may end up in the ER... but honestly, it sounds like the only way.

Please don't bash me... I've had to do this with Mila... take the bad advice and let her suffer for a bit before anyone would take us seriously... Like going home from the hospital when I knew she wasn't right yet, only to have her spike a fever and have to go back.

Honestly, though... whats left to try???

Aug 05, 2008
daniejo
Mom (Danie) to Adam (9-4-03) & Nate (3-7-07) Nate was diagnosed with silent AR at 2 months old. He was on neocate, prevacid 30mg per day and couldn't start solids till he was almost 8 months old. He started cow's milk at 14 months and is currently off all meds!! So far so good :) PIC: Disney trip 2008. Nate didn't know Piglet was there, he didn't like the characters too much.
This saddens me to no end. I have to say...I agree with Sarah. I can't imagine having to do it this way...but it seems it's the only way to get the dr's to see what YOU see. I am so sorry about all of this. Please keep us informed...we are here for you.
Aug 05, 2008
amber f
I kinda have to say I'd go with what Sarah said. As hard as it is maybe following the directions will show them that it won't work. It is scarey to limbo with her weight but it looks like you are running out of options. Even though you think it won't work maybe if she gets really, really hungry she could eat. You never know and I'm sure you have never let her go more then skipping a meals or a bottle. Like Sarah don't bash me but I think it could be worth a try.

This is all easy for me to say but I know I probably couldn't follow through and I'd give in and feed her what she'd eat. So I know how you are probably struggling internally. I'm so sorry that they had NO helpful suggestions then starve her. (((HUGS)))

Aug 05, 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
I would try it for a couple of days 2 max and document everythign she eats and all of her bahviorus. That way when and if she looses weight you have proof that is WON'T work.

If you don't make any head way after that...I'd look for a second opinion.
Aug 05, 2008
mdbarbagallo
Melissa - Mommy to Sebastian, born 9/28/07 @ 7 lbs 7 oz and 20.75 in. At docs at 12 months: 27 pounds and 32 in! Good grief! GERD - currently on Prevacid suspension (liquid equivalent of 45 mg a day). Allergic to dairy, soy, eggs, wheat, all treenuts, peanuts, fish, shellfish, peas, sesame, bananas, barley, coconut, dust, dust mite, dog, cat, latex. Seasonal allergies. Oral Allergy Syndrome (OAS). Neocate only - no solids - until further notice (drinks and loves water, too). Loves his doggie, our rescued Treeing Walker Coonhound, Louise, even though he is allergic to her. Louise will make your doctor a homemade pie if you would like her to. PHOTO: We couldn't do a cake on Sebastian's birthday, but that didn't stop him from tossing around the contents of a big bowl of popcorn! He now tries to eat it when we play with popcorn, so no more of that game.... :(
If I had taken most of Sebastian's doctors' advice, I don't know where we'd be right now. We're already a mess...even though I sought 15,000 opinions. My advice is to do what in your heart is right for YOU. They see your kid once in a while; you live with her. Any chance there is another clinic you can try? Can you they refer you to some mommies who have had success at that clinic? I'm really sorry. This seems so unfair to all involved (except the clinic).
Aug 05, 2008
katiesmommy
Tracey, mom to Katie diagnosed with GERD at 3 week.
Michelle, as I write this I have tears in my eyes for you as I feel your frustration! I agree with the others to give it a try if only to prove that she may not be ready. It is hard when we know the dr.'s advice is bad but sometimes taking their advice to prove that they aren't correct is the only way to make them see. Big Hug to you!
Aug 05, 2008
michelle&aurora
Aurora born March 17, 2007
3 years, 8 months old
Weighs 25.8 lbs
8 lbs 11 oz at birth.
Recovered Chronic Projectile Vomiter
Prevacid Free since September 08
Egg allergy diagnosed Jan 26/09
Has a Pectus Excavatum
Has an Epipen
thank you for the support, girls. I'm definitely going to give these new suggestions a try (except for the soup, she's getting that!!). I'm probably being overdramatic, it's just that I had all these expectations from the clinic and they don't share any of my concerns.

Maybe she will start to eat better if I let her get more hungry. I know you guys are right. And as of tomorrow I am going to document everything, just in case.

I would NEVER bash any of you here, lol. I highly value your opinions and honesty.

The fact is, Rory has come leaps and bounds from a few months ago, but I'm just afraid to risk the "formula" crutch I have....if she doesn't eat, we've always got the "formula".....and actually, the "formula" isn't doing a whole heck of a lot lately anyway.....2 oz in 2 months!!!!

Aug 05, 2008
mom2halleyann
Donnessa, mom to Halley born 3/10/07
Reflux (mostly) resolved at 14 months
and Addison born 8/17/09. Currently exclusively bf and on 7.5mg Prevacid
I agree with the others - try what they say for a few days. Best case scenario (which I doubt), they are right, worst case scenario, maybe you can finally get someone to listen to you. Trust your instinct - you know Rory better than anyone. Sending big hugs.
Aug 05, 2008
kmom
Worry Wart mom to
27 mo. reformed "happy spitter"
34.8lbs , 37in tall(oct)
Diagnosed A/R at 6 wks
Zantac until 1yr then Prevacid
Med free since February 08
peanut & egg allergies...still
Zoo Boo Trick-or-Treating (pic).
Ok, not to bash anyone (love everyone here) but I would never let my kid get sick to prove a point. Granted, my son never had a tenth of the problems as some of the LOs have so I have not "been there". However from my perspective, I would try what they say for a little while. I would make sure she got plenty of liquids: water, juice, milk. Dehydration is too dangerous; don't intentionally go down that road. If she even seems like she has lost weight, stop what you are doing, take her for a weigh in. If you have to wait, feed her whatever she will eat. If they give you a hard time, try another clinic.
Aug 05, 2008
slimfast13
This is our dd, Alessandra. Dx with GER 10/07. Ran the gamut with meds and now done with them (crossed fingers). Using magnesium, probiotics and prebiotic supplements. With the exception of teething and general sassy attitude, all is well now. They really CAN grow out of it!
My heart is aching for you and Rory. This kid has so much fight in her, and you have so much strength to have been able to go through this with her. Even though I can't really add anything to what all the other moms have said, just know that prayers and mental hugs are flooding your way. Keep us updated, and we'll keep bein here for you!
Aug 05, 2008
mom2coy
Coyle Eagan. One Year Old. Doing well on Cow's Milk flavored with juice :) Drinking two bottles of Go&Grow daily. Eating solids better but still have rough days. No More Silent Reflux-that I can hear anyway.. but puking again. Zantac 2ML 2X daily.
Hey michelle, sorry you are going thru this. First let me begin by saying you are not alone. I've been told so many things by friends, family, doctors that I'm just plum sick of people not listening to me. I spoke to a GF on the phone today and I happened to mention that Coy is waking @ night for bottles again. {11 and 3}.. she told me not to feed him/let him fuss because he could become dependent on those night feedings. hmmmm. well, she's never had a child FAIL to gain weight! no matter what U do! I, like U, have done everything in my power to kid my ds to eat and even when he does have great eating days he STILL does not gain! it is so, so frustrating and i want you to know that I understand.

let me ask, what do U want to do? can you set yourself maybe some goals and timeline for those goals? if you don't want her to drink formula anymore then you should set a timeline to wean her off of it. same with feeding her @ night or right before bed. but, these should be things you are comfortable with. maybe you could start by cutting out 1 night feeding and seeing if that actually makes her more hungry during the day? i don't know...

has she had bloodwork done? you know, thyroid checks etc... coy had his last week and we are waiting on the results. i wonder if there is a way to test metabolism?
Aug 05, 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
Michelle
The reason I stated the 2nd opinon is just confirmed by what you stated in the last post. A good clinic would work WITH you and you would make a plan TOGETHER.....HUGE HUGS!!!! You know your child the best and that is why theyshould work with you to make th eBEST possible plan. these kids are not "cutter cutter" what works for one will not work for all. It's about getting an individulaized plan for each child. In orde rto do that all parties must be willing to work together.

With our clinic it was a give and take to figure out what would work best. I gave and did somethings there way and they caved and did soem things my way....

Not sure how many options you have up there like we do here...again BIG HUGS!!!!!...????

Like I said earlier, try there way for 2 days. If it is not working give them a call and tell them as such. I have before.
Aug 05, 2008
ceramom
Sarah
mom to Mila 2-20-2007
and Robby 4-22-2004
Mila is on Peptamen JR 30 cal by NG tube. Open Heart Surgery 2/08/08. Captopril, Zantac, Losec, Lasix.
I wanted to mention to all those following this post that Michelle and I ( among others ) live in Canada. The health system is *very* different. Sometimes the only way to get any help at all is to follow the bad advice. I am not ( nor is anyone else ) suggesting that Michelle let Rory become dangerously dehydrated.

That being said, here in Canada, often the ONLY way to get a child & parent taken seriously is to have them admitted to the hospital. At least, that has been *my* experience, and that of fellow Canadian moms I've spoken too.

Michelle - I *always* ** always** say trust your gut. You above all know what she needs.

Another note... my pediatrician has recommended the starvation protocol for children before. Child goes into the hospital, and they simply ** stop feeding them **. Nothing by tube, no force feeding, no bottles. He says within 3 days, all children without medical issues eat. All of them. ( I would never, ever allow my child to do that, but thats how it works in sweden )

Aug 06, 2008
michelle&aurora
Aurora born March 17, 2007
3 years, 8 months old
Weighs 25.8 lbs
8 lbs 11 oz at birth.
Recovered Chronic Projectile Vomiter
Prevacid Free since September 08
Egg allergy diagnosed Jan 26/09
Has a Pectus Excavatum
Has an Epipen
Hi Ladies, I appreciate ALL the input. I think I was a little harsh yesterday. Really, the clinic has only made these "suggestions" for the benefit of Rory's development, so she's not waking at night, and learning to feed herself the bottle. My anger came from the general vibe I got while there, and the fact that our initial visit, I made it clear that I needed a "plan", and we haven't gotten one. I went to 13 schools, had 3 fathers, and lots of childhood "drama", so to speak. I have a personality that REQUIRES constancy, consistency, and a plan to follow. If I am given directions, I follow them perfectly to achieve maximum success.....that is, until Rory came along. There is NOTHING consistent about her. I just feel "let down" by the clinic and the medical community in general, not just because of Rory, but others, like Mila and Jazzy.

I realize that if I want things to change, I have to "try" changing things up. My fear of her "failing to thrive" has kept me from using normal practices with getting her to do things she should be. Like holding her own bottle, drinking cold bottles, using a cup. She needs a bit of tough love. Part of me has become soooo defensive with the doctors, because I'd have to admit that my way might not be best for her.

So, my new plan, my own plan, is to re-institute positive reinforcement at meal time, to stand firm on the cold/drink it yourself bottles for two or three days and see how it goes. I certainly won't let her dehydrate. These were suggestions, not rules, and ultimately I am the guide. Our hope is that if she refuses her bottles, she'll be hungrier for meals. She HAS to learn to self-regulate and self-preserve, by satisfying her own hunger and thirst. I haven't allowed her to do this. Many of you understand why.....she's little. But I'd hate to think that while I've kept her growing physically, I've also stunted her development. :(

I'll keep you all posted. Many hugs.

Aug 06, 2008
michelle&aurora
Aurora born March 17, 2007
3 years, 8 months old
Weighs 25.8 lbs
8 lbs 11 oz at birth.
Recovered Chronic Projectile Vomiter
Prevacid Free since September 08
Egg allergy diagnosed Jan 26/09
Has a Pectus Excavatum
Has an Epipen
I should add that it's not that I haven't "tried" to get her to do it on her own, I've just never followed through. I give in and feed her myself, to keep her on schedule, so she gets maximum intake for the day.
Aug 06, 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
MIchele and Sarah
I totally agree with you. Trying for a few days won't jurt inthe long. I mena we yanked Jedd's NG tube and tried a couple of times before we realized it just wasnt' going to work KWIM??? There is NO harm in trying. That way you can com eback to the table so to speak and say I tried it didn't work can we try something else.

To be honest the last tiem the cklinic changed Jedd form Peptamen Jr to whole milk. I told them I soooo didn't think it would work at all. Thye said just try it and see you never know. I made sure to tell them that I would call if he was not tolerating it and we were all cool with that.

That was actually one of the months where he gained the most ever!!!! So goog things can happen.

I hope this is one of those times!!!

Check with your
doctor first!