Posted By Posting
Jan 12, 2009
jean9
G-tube? PEG-tube? fundo? both or none?
Hello to everyone! I'm new to this posting thing, but already am thankful for finding this website! My daughter Libby is 19 mos., 18 lbs, FTT, GERD, on Prevacid only, severe food refuser. She is a twin (sister is healthy), born only 4 weeks early, developmentally normal, but GERD diagnosis finally came at 2 mos. Since then she's limited her intake and until recently had followed her "own curve" beneath the norm on the growth chart. Now there's concern her weight gain is plateauing. Testing has shown significant GERD, but normal Gastric emptying, dilated lower esophageal port (which can be "normal" for some people), but normal biopsy results from endoscopy. I realize we're lucky to not have no other major health issues and to have avoided other GERD complications (ie. aspiration, dehydration, etc...), but given that blessing we're struggling with the current decision: to tube feed or not? to do the fundo or not? Is it necessary given no other health probs? The GIs insist she will benefit and 'thrive' from tube feeding, but which one to do?? G-tube? PEG tube? And we're wanting to avoid both. Then there's the fundo. Does she need it? Will force feeding with a tube make the GERD worse and then she'll definitely need it? So do both at same time? What are the possible complications from one or both? Do the risks outweigh the potential benefits? How long can/should we put it off? We certainly don't want it to affect her cognitive development. We're lucky that she's generally content --- unless you try to feed her beyond her "quota" (usually 2 oz. at a time of pediasure with DUOCAL powder in it, and/or 3-4 swallows off her limited accepted foods list-bananas, cheese, cheerios/certain crackers, vanilla ice cream). She even requests food/drink at times, but then usually just tastes it and doesn't actually swallow much. We've tried many approaches out of frustration/desperation/direction from feeding therapists. Still praying she'll "outgrow" it as we'd been told, but it's looking doubtful. Hence the tube feeding/fundo. discussion. Anyone been in this sort of situation? Advice? Stories to share? Can't wait to hear from anyone! THANKS!
Jan 12, 2009
katiesmommy
Tracey, mom to Katie diagnosed with GERD at 3 week.
Is there a particular spot that she will eat at/in? Katie went for the longest time with only eating in the bathtub or only eating if a particular show was on and she could watch it. She's 15 mos. and does have developmental delays and just put on a few pounds so she's up to 20 lbs after much feeding difficulty. She also can't take much at one time, usually 3-4 oz. of formula and a stage 2 fruit. She literally eats all day since she can't take in enough calories at one time. Hopefully other moms will jump in on the fundo and tube issue. Welcome!
Jan 12, 2009
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.
Hi and welcome. has anyone suggested removing all dairy from her diet? Often dairy and soy can cause reflux to flare or worsen. I wondered also if prevacid may not be working for her. A lot of us have had babies who don't respond to prevacid at all, and need to try Priolosec, nexium etc... to try to find one that works. Sometimes a combination is needed. It would be nice if they could try a variation of these meds before resorting to a tube feed, esp. since it sounds like it is something you don't want to rush into.

Jasmine was never a great eater because it hurt so much. We tried 5 different meds before we found Nexium, which really helped. She also wanted to eat, but refused to swollow food. Sometime she flares up still and we use maalox/mylanta to help with the pain. Has your Dr suggested that you guys try anything like this?

This is a great board for resources, it has helped me enormously.I hope it helps you along the way too.

Jan 12, 2009
jeddsmommy
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
Hello Feeding Therapy Info.
From someone who has a child with a tube, I'd avoid it honestly.

I would however GREATLY suggest you get into some type of feeding program ASAP. They can do wonders with kids with medical issues. I suggest this in stead of a tube (I know others will be shocked I am not saying get a tube...LOL) because she is willing to take in multiple types of textures. Unfortunately children really don't tend to "outgrow" a feeding issues. If it is not addressed, it gets worse over time and THEN you end up on a tube.

NOW, if hydration has been an issue in the past medically and sickness has taken there toll.....a tube would be good. I DEF. would NOT do a Nissen that's for sure. IMHO a Nissen is a last resort after all medical interventions have failed AND on a child how is having life threatening issues due to their GERD.

Jedd has gone from 100% tube fed to 100% oral in the last year. He has been mainly tube fed for the vast majority of his life. He got his first tube at 9 weeks old.

We have done MAJOR feeding things at home through Early Intervention and a local Rehabilitation Clinic. We are getting ready to see Richmond's Children Hosp. for a intense therapy eval session at the end of the month.

WHAT are the therapist having you do for feeding sessions, What toys are you using, what exercises are you doing??? What kind of approach is being used, is it a behavioral approach??? How long have you been doing the therapy?? Is your therapist certified to work with feeding aversion kids???

Alot of questions from me, I know. It's hard to answer without more of info from you...sorry.

More intense therapy is they way I'd go first, if that fails look to a tube. Provided that Winter has not been particularly hard.

The best feeding centers are:

Herseys in Philly.

KKI in Baltimore, MD

Richmond's Feeding clinic in VA.

There is also a 2 week day program at Nationwide Chidlren's Hosp in Columbus OH, I talked with them in person when Jedd had out of state testing and they seemed real good. Jedd just needed something more intense than that.

There are some on the west coast but they are not as good as the East coast, sorry, west coast people... I know the West coast doens have a program called Clinic for Kidz. It's in CA.

There are more of them. Satellite programs are popping up everywhere.

Can you tell we've researched this alot.

Alot of time kids with feeding issues need a behavior based program. They need to be, for lack of a better word, re-programmed. They need to learn to eat, plain and simple. ALL of the programs I listed will never do force feeding. They are behavior based but they do positive reinforcement for good eating behaviors.

Let me know if you have any other questions, Jessica

I am going to do another post about G tubes so it will be an easier read. I'll try to add pictures to that one as well.

Jan 12, 2009
jeddsmommy
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
Types of Tubes
Let me start by saying you will NOT get a choice as to what brand of tube you get or how it is placed. The hosptial that places it will have a standard procedure they will follow for all procedures.

A PEG tube is also called a long tube. I have NO pictures of those becasue Jedd had a straight Mic-Key insertion. The long tube is basically what it sounds like. The child is sedated and edoscopically a hole will be made and a long tube with a disk on BOTH sides is placed and stitched into place.

A Log tube is a PITA BTW.....it gets in the way and gets yanked on quite frequently. Surgeons like to place a PEG first because it allows for a very stable stoma tract. A stoma is a fancy name for the HOLE the DR will make in the stomach all the way through to the outside. It also has less infections too, sometimes....it depneds on the kids.

After about 6-8 weeks the child goes back into the OR is sedated again, and the disk on the inside is cut off and the PEG tube is removed and a Mic-Key button (or what er your hospital uses) will be placed.

Now, we had a straight Mic-Key insertion. So is was done in the OR but instead of placing the LONG PEG tube Jedd came out of th eOR sproting his Mic-Key button from the get go. WHOOHOO for us!!!!!!

His Micky was to stay in for at least 6-8 weeks before we coudl repalce it. His was reaplced sooner than that due to excessive Granulated Tissue. (I explain that in a min.) Thank heavens I made them do it becasue one of the disolveable stitches form the inside sutrues was coign out his stoma tract and was CAUSING his tissue issues.

Granulated Tissue (GT) is baisclly the body trying to heal itself. It is tissue tha tgrows in an attmept to close up the hole. OF course witha G tube you really don't want that to happen. It can literally grwo in less than an hour and continue to double in size in some kids. After Jedd's wayward stitch was removed, we had very little issue with GT. I used an RX steroid cream on his site 3-4 times per day until it was completely healed and we were good to go.

For us, the G tube literally saved JEdd's life. It is a decision we BEGGED for. He had been 100% NG tube fed down his nose for months, so for us, it was a nobrainer.

I will warn you, that if you make a consult for a G tube to speak with the surgeon to hlep you out on your decisin they will try to scare the daylights out of you. DON'T let them do this!!!!!!! They will tell you that it is MUCH better to do a Nissen and the G tube at the smae time and that is there standard procedure. Well, just ecaus that's what they "normally" do, doesn't mean they HAVE to do it.

We were told they wanted to do one on Jedd and we refused. When we told the surgeon that he said we would make his job "harder" if Jedd needed to go back in to get a Nissen and instead of doing it closed they would need to open hin completley up. DUH, they would have to do that anyways, Jedd has LOTS of scar tissue due to his Open Heart Surgery....

BTW we met the surgeon a few months ago in the halls of th ehosptial and he agreed that DH and I had made the correct decision for our son. THAT my friends felt GOOD!!!!!!!

May I ask WHY are they wanting to do a Nissen???? Does she vomit ALOT all day or something???? Jedd did and I mean he vomitted ALLL day long and ALL night long on his pump feeds.

Jedd was also a gagger and retcher. Children who do that will have a GREAT chance of the Nissen failing and then you are stuck in a worse situtaion than you were before. Stastistics show this. As well as children with Neurolgical issues, they do poorly as well in the long term outlook.

Sorry about the typos, I switched form Firefox to IE in between posts so I can add pictures to my next post...LMAO....Let me know if you have any tube questions. My e-mail is onion95@gmail.com

Jan 12, 2009
jeddsmommy
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
Photobucket
Jan 12, 2009
jeddsmommy
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
Let's try again. Here's a slideshow.
Jan 13, 2009
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
First of all, HUGE HUGS! I don't usually post here anymore, but I felt compelled to reply to you. My daughter had GERD and major feeding issues from birth. She is now 22 months old and is not quite 19lbs. She has had quite a few daycare bugs that have caused her to lose and gain, lose and gain, which is quite scary. I struggled with the decision to put her in daycare, because of this very risk, and I am still struggling. HOWEVER, she is very bright and has never had any of the complications that you have mentioned.....and she now eats, after therapy, tips from the lovely ladies on this site, and some peer modelling at daycare. NO ONE, not one of her doctors is concerned. I am the only one.

It is a hard decision. One I've never had to face. It has been explained to me that, absent of aspiration, dehydration, and other significant health concerns, weight issues are such a concern because of the development of the brain, and the brain's requirement for fat and nutrients to develop. If your daughter is on target developmentally, then you might consider waiting it out. At the same time, were she to acquire a nasty virus, such as Hand, Foot, Mouth Disease, or the flu, it could be quite devastating on her, weight wise.

I would definitely go the route of therapy first, and if you have, consider your progress. I know that, if it were me, I would wait, because feeding issues aside, toddlers come in all shapes and sizes, and some are extremely picky. I am NOT, at all, saying your daughter is picky!!! Oooooh, I hated that. Trust me, I'm not.....but miracles DO happen, because I see my little girl eat every day, and I am STILL astounded....and still traumatized by the whole ordeal, lol.

All that being said, there is a small part of me that thinks you are lucky that your doctors are at least taking your concerns about her weight seriously. I have an appt on Monday for a full weight/height/head check, and asking her doctor STRAIGHT-OUT if I need to be concerned. The answer has always always been NO, but Rory will be 2 years old in 2 months, and it's unlikely she will hit 20lbs by then.

Okay, I guess I wasn't much help, but I wanted you to know that you are not alone in this situation, as far as weight goes, and I pray that whatever decision you make will be one that you are at peace with. Good luck. Oh, how much does her sister weigh??? I think that is the hardest part for me, comparing other lo's to my own.

Jan 13, 2009
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 also wonder if it's possible for you to get her together with other little ones for a meal or snack, a few times a week. Like a mommy group, or something? I don't suggest daycare because of the coodies, but something for a short period of time so she can see other kids eating. I SWEAR, this worked for our daughter!! Maybe her therapists could suggest a group therapy setting or something. It might be worth a try. I know she has a twin to share meals with, but she doesn't get any "peer pressure" from her, kwim? All the best. HUGS!
Jan 13, 2009
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

I would like to warn you, fundoplication will not fix feeding aversion, it can make it worse.If there are no complications, why on earth are they wanting to do a fundoplication, that is nuts!!!???Fundoplication is not even reccommended children with feeding aversion/swallowing issues

Brent had his fundoplication due to failure to thrive,severe esophageal damage and aspiration of reflux/breathing problems, plus he had a very very large trapped paraesophageal hernia, some potentially life threatening complications.He had the fundo over a year ago, and he has retched and retched(which is horrible), he has had many post operative complications, possible nerve damage,and his reflux is almost back in full force and he is having complications from it again, he never came off reflux meds, we have had to increase, and is now also on pain medication,muscle relaxers and zofran..

this is retching, a complication

[URL=http://s304.photobucket.com/albums/nn161/Jessicalynn26_photo/Brent%20feeding%20videos/Brent%20choking/?action=view¤t=004.flv][IMG]http://i304.photobucket.com/albums/nn161/Jessicalynn26_photo/Brent%20feeding%20videos/Brent%20choking/th_004.jpg[/IMG][/URL]

The point that I am trying to get across is when you have a fundo, you are trading the complications from reflux for potentially a new set of complications like dumping syndrome,retching,gas bloat syndrome,slippage of fundo,nerve damage, possible dilations, and so forth.. which is why normally it is only done in life threatening situations, it makes it worth the risks, understand? Sometimes there are good results, sometimes there are bad, you just never know how it will turn out. It cannot be reversed.

I have found that many doctors sugarcoat the procedure and make it out to be nothing, when in fact it is major surgery and there can be serious complications/risks.

A fundo is NOT a cure for reflux, many kids are not able to come off meds, and reflux frequently returns. It is most useful and needed when it comes to lung protection, lung damage, etc. when all other treatment has failed.

__________________

Jan 13, 2009
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
Jan 13, 2009
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

SOme fundo/gtube pics

<

Jan 13, 2009
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
Jessicalynn
I just wanted to give you a cyber hug Jessicalynn (((HUGS))). That was very frightening to watch.
Jan 13, 2009
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 second the trying to remove all dairy from her diet.

I would suggest gathering her growth charts from all her doc. offices, unless u already know the weights, heights, ect. and looking at it for yourself.

If she is growing, just slowly, I have been told it is less of an issue. Some kids just follow their own growth curve. Also, what ethnic background does the child have-u don't have to answer that-just a thought.

My daughter's dad is Egyptian and she is considered failure to thrive here. However when charted on the Egyptian growth chart, she is about 50% for everything.

Another thing that a well trained pediatric allergist pointed out to Meggy's dad and I just recently was to take their diaper off and look at their little bottoms. If they are rounded, however small they may be, it is more likely they are doing okay nutritionally.

Some kids just don't need as much to grow as others. Some just have to have very small feeding spaced graciously throughout the day.

Meggy is 31 inches tall, 18 pounds, 44.5 inch head circumference, 20 months old. While she is not at the size doctors prefer her, she is following her Egyptian heritage. She will just be tiny and I am okay with that.

The other thing is consider daily pain levels. My daughter suffers greatly in pain on a daily basis. Not all day mind u, but every day especially at night.

I have heard too many horror stories to ever consider a fundo for my little one. I also think if her nutrition were compromised again, I would resort back to NG short term before going to a G-tube. I do remember the NG when used previously was like torture for her. She was in constant pain. She could not tolerate the extra calories or food. Her body just could not process it.

Meggy is allergic to dairy, soy, strawberry vanilla, she is sensitive to corn, and a few other things. We learned this through food and symptom diaries. We would journal everyday on everything she ateand the timing of eating it, then how she was doing at what time of the day.

Please do all your research and try everything possible before resorting to fundo.

Jan 13, 2009
jean9
THANKS!
THANKS to all who replied!! Katiesmommy- I think if I allowed Libby to walk around with food/drinks all day she'd graze on and off. That's part of the prob. too--she's a "mover"-- always "on the go" type of kiddo. So off she goes burning the few calories we get in her!The feeding therapist we've seen feels we should keep her eating only in her highchair and to keep meals/snacks timed 2 & 1/2-3 hours apart. This past month I've done away with some of these "food rules" to see what happens... So, do I just not worry about developing bad eating habits just to keep her eating?? And how do i explain to her twin and big sister that they can't eat how she's allowed to (ie.in front of TV, walking around instead of at table, etc..)? Also, we tried prilosec 1st--when diagnosed at 2 months. After not seeing change for months and months, switched to prevacid, but it didn't seem to matter. Been told it's the 'best' choice. Tried Reglan right after diagnosed GERD (2 months) but one GI really opposed it and felt it would do more harm than good. But it's been brought up to try again... How do you know when to give maalox.mylanta? Is Katie crying/complaining from pain? Libby doesn't seem to be in pain.. just annoyed that we want her to keep eating. She's just begun to verbalize when she "burps" and periodically will blow bubbles with saliva like she's trying to get something out of her mouth. But she's yet to say "ouch" in anyway that we can tell. Jeddsmommy-Boy I would love to talk to you!! IYHO what's the best therapy approach? We're 1hour between Buffalo, NY and Erie, PA. Most recently we're following the 'food rules' --- as described a bit above, but they also include 1-no commenting negative or positive on her food intake. The idea is that she should want to eat for herself to satiate her hunger and not to see us do a big cheerleader dance. 2-no distractions/games/toys, etc. 3-Offer solids first then sippy cup then bottle 4-limit time in highchair for either meal/snack to 30 minutes exactly-no more than that. 5-overall try to keep it pleasant experience! Good luck when she keeps handing the food back to you/throwing it off her tray and saying, "No! and All done!" or crying for her bottle and then when you give it to her she'll maybe take 2-3 oz. and then she's really all done. I like the OT we've seen, but she's said she's out of 'tricks' and it's really just up to Libby re: how much she'll actually swallow. We were only getting OT 1x/week on consult basis one hour away at Buffalo Childrens' Hosp. Libby actually likes pretending to feed dolls, etc. and even herself so long as there isn't anything to swallow. I referred to the County for EI eval to get in-home service, but I'm thinking she won't qualify. In NY you have to show developmental delay in 2+ areas or severe in one. Not sure if eating will be considered an area of 'delay' given she doesn't seem to have texture, sensory issues. So I agree we should push the therapy, but not sure how to get it. I would LOVE someone to be with me at every meal/snack to help decide what's best to do at every moment of food refusal, crying, and even food acceptance. How did you possibly get Jedd to do so well this past year? The GIs we see are not in favor of the fundo., but have warned us that when we meet with the surgeon who does g-tubes, he promotes fundos. and may think we should do it, given that it appears the lower part of her esophagus dilates beyond 'the norm.' But no--she's not throwing up regularly. She can get herself to vomit pretty easily if she gets to crying hard enough. That's been fun at night trying to decide if she's crying from GERD issues or just because she wants us to come back in and spoil her. Whatever the case, she learned quickly thjat we'll fly back in to the room if she starts to throw-up. She almost always gets hiccups after only and few giggles and that seems to make her 'blow bubbles' more (as explained above.) Our GIs will place a PEG if we prefer that over g-tube. I'm just afraid of doing anything... thinking it'll make things worse. I mean if we fill her tummy beyond what she's used to limiting it to, won't that make the GERD worse? That'll probably be one of the surgeon argumentss to do the fundo. I'm terrified of tube feeding at night... hearing about kids being strangled with tube around their necks! Michelle&aurora- Libby's twin sister is proabably about 5 lbs more than her. She was 1 lb less than Libby at birth, but since 2 months. old has weighed more and is always widening the gap between their weights and heights. As in most cases, she's the extreme opposite in that she LOVES to eat! what type of feeding therapy have you done for your little girl? What has worked? I'm afraid if I remove dairy from her diet there'll be nothing but bananas and cheerios left! And she doesn'e always want those! I'm just so glad when she eats cheese--for the fat, protein, etc. Her primary nutrition comes from the pediasure (mostly in a bottle) - -- (think she'll take a bottle to kindergarten?), and it took alot to get her to accept that and switch from Neutramagin formula (YUCK!). Can't imagine switching that again. Anyone have any ideas for high calorie finger foods? Or Highest calorie foods that kiddos can easily self-feed with spoon/fork? I've tried making pancakes, mac-n-cheese, french toast, etc.--all drenched in butter... Anything easier--that I can buy and not have to make or doctor up? Thanks to whoever actually took the time to read all this! : )
Jan 13, 2009
jean9
sorry!
sorry the above message is so squished together! When I typed it I had spaced it all out well. not sure how to fix that!
Jan 14, 2009
jeddsmommy
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
Type < p > without the spaces and it will make the paragraphs for you.

If you have a choice over a PEG versus straight G palcement, I'd go with a straight G...JMHO...LOL It's easeir and Jedd tract healed pretty good after about 3-4 months.

BTW we tube fed at night for about 1.5 years and Jedd never got the tube around his neck, ever. I know it's hard NOT to worry about it, but I wouldn't. I know a Mother who uses a pool noodle, she thread the tubing into that and then conncts her child. NO issues there....GENIUS idea if you ask me...LMAO

Talk to your Ped and see if there is a rehabilitation Center in your area. If you live close to a children's hospital you should have one near by. They can get you in to a feeding center.

For us, we see the Rehab center affliiated with our hosp. thye were happy to leave Jedd on purees and call it a day, DH and I were NOT up for that, we want him to eat "normally" KWIM....real food. That is what we define as success in the feeding arena.

That said, we talked to the GI who put in the referral for us to go to Richmond for the eval. He was more than happy to do it. He understands completely. Now we may get there and they may say to give him 6 months, we'll see. IDK, we'll probaly schedule the times while there JIC. Trying to get in is next to impossible and wait list are a mile long. I'd rather got ON the list and cancel then wait and have to wait longer.

Do YOU feel her pain from the GERD is under control??? I am of the opinion that a child will not successfully eat until the pain is resolved. As long as the child is IN active pain they will not WANT to eat.

We do the behavioural approach. Fully. Jedd sits in his highchair and eats. It is to the point now tha tthe TV doesn't get turned off at all during feeds. I still call them feeds...LMAO....just can't get out of that mode....LOL He has a strict schedule and we stick by in day in and day out. IF not I will caus e him to vomit as we are trying to get him to take in orally ALOT of food and water for hydration. So he has to stay on schedule.

don't get me wrong, he has hiss issues. He won't suck up on his special "bottle". I'll have to post a pciture of it..LOL S yo uknwo what I mean, it's not a baby bottle. I have to squeeze it and he still bites the straw of it really hard to block the flow of milk. that is due in part to low muscles in this jaw.

He also really only accepts food off of a spoon and only takes purees really well. Solids are REALLY iffy. They go in get shcewed and get spit back out. He will swallow some meltables.

Back to the behavour stuff. When ever Jedd did something we did NOT want him to do while eating, we told him sternly NO NO we DON'T DO THAT!!!! and corrected him.

that goes for hand swattign and kicking to. I would hold his hands and tell him NO NO....you get the picture.

All the while we would praise praise praise bites and swallows. It was a VERY slow process for us. It has taken from around Nov of 07 until today. And it is a work in progress everyday. He will STILL challenge me at feeding times.

We have been under the direction of the Rehab Cednter here and Early Intervention that whole time.

For you, if you don't have one IN state to go to, I'd go to Hersheys in PA. They should be close by to you somewhat. Not sure about the geography in that area...LOL

the trick with ins. co. is to exhaust your options IN your area prior to going OUT of your area for help. We were able to say Look, we've been doign the rehab center, we've been doing EI x's a week forever......we are wasting MONEY....basically it was time to brin gin the BIGGER guns.

The one thing that worries ME greatly is....not to toot my son's horn...BUT he's a smart cookie for his age....We are worried that by doing the feeding therapy OUT of my house he will reliquish and DO it whiel there and once intorduced back into his old environment, he'll go back to his old ways quickly....a BIG worry for me.

We just don't wan tto amke a mistake and loose ground. KWIM. So that is on my list of ?? to ask the clinic when we get there.

I'm kinda rambling tonight..it's late. Let me know if you have any other questions. You can star a new thread if you want so I won't miss it. Just put my name on it. Here's my e-mail. onion95@gmail.com I have done some cell phone calls after hours so that it's free....LOL I don't charge....HAAHAAAHAAA :-)

Off to find th epicture of tha tbottle thingy the OT made us.

Jan 14, 2009
jeddsmommy
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
[IMG]http://i268.photobucket.com/albums/jj22/mom2jedd/Gifts%20Christmas%202008/006_19A.jpg[/IMG]
Jan 14, 2009
jeddsmommy
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'm bad at picutres....let's try again...
Photobucket
Jan 14, 2009
jeddsmommy
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
Here's a slide show...LOL
Jan 14, 2009
jeddsmommy
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
It's a retrofitted Hari Applicatin Color Bottle made by Sally Beauty Supply Company.

The top has been cut down and the straw is ice cube amker tubing bought at Lowes or Home Depot. We first used fish tank tubing for the straws....LMAO The ice cube maker tubing is much stronger. You can tell that I am squeezing in the pictures and tha tJedd is biting the straw.

Jan 15, 2009
molly's mom
Hi, I was so happy to see your post. My daughter (almost 6 months) sounds very similar to yours. She is off and on an ng tube. We are struggling right now to decide if we need to do a g-tube. Our daughter basically refuses to eat. She is not gaining enough weight on her own. She is on prevacid (7.5 mg 3 times per day). No one has any answers for us. We ust keep going day to day trying to get her to eat and thrive. Recently we started rice cereal and now she has white patches (no pigment like) and very dry patches on her arms and chest. She also had odd bowel movements. The doctors want to do a scope, but I am so nervous...she is so young. I will tell you that the NG tube is nice, because we can take it out/put it in when we want. I do not like the fact that it is very noticable to strangers (a lot of unwanted questions and staring), and it is difficult to keep it in her-she pulls it out a lot. If you have ANY advice/help for me please let me know. Thanks!!!
Jan 16, 2009
baby quinn's mommy
Mom to a 3 year old baby girl with severe reflux: g-tube, nissen fundoplication. dx: RAD, failure to thrive, DGE, epilepsy, sleep apnea, paraesohphogeal hernia, high lactic acid there's more "unknown disease"... Hospitalized 12 times, PT graduate! ST graduate! OT graduate! Current Meds: singulair, zopeonex, pulmicort, reglan, Keppra, Trileptal, vitamin B6, Veramyst. Current weight: 34 lb. Current height: 39". g-tube dependent, oxygen 1-2LpM all day and night PIC: Ms. Quinn
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I'm late and havnn't read responses so this might be a bit redundant. I think that in your case, your daughter is still eating. Granted it might not be much, but given the fact that she has not suffered from severe and chronic illness directly related to her lack of appetite and you have not specified a delay in development, she still has some time to develop more appropriate eating skills without the use of tube feeding.

I think that in her case, putting in a feeding tube presents a higher risk of taking steps backwards instead of moving on to the goal of being able to eat orally and sustain a healthy weight.

on the other hand, if illness played a role in her lack to eat such as chronic dehydration resulting in numerous hospital stays (as in the case of my daughter) or aspiration risk resulting in pneumonias, In my opinion, you are still on the safe side and (in my opinion) should avoid a tube until the situation becomes life-threatening. enrolling her in a good feeding program would probably benefit her greatly! i wish you the best of luck! -Sarah

Check with your
doctor first!