Posted By Posting
Feb 16, 2009
jean9
jessica x2!
Thanks for both your replies! Just to answer your ?s and ask more... We have not done NG tube feeding--she's too old I guess.

When diagnosed (at 3 months) we tried prilosec. Seeing no change we switch ed to prevacid and have done that since... we've tried periactin with little results.

her primary nutrition is pediasure with duocal powder added.

we've done some feeding Tx, but seemed to come to a standstill re: progress, techniques, etc. maybe we need a new therapist? We're in southwestern New York (1hr south of Buffalo, 1 hr. north of Erie PA). How much can actually get done if travel somewhere for one session? Libby won't qualify for county early intervention because she has no other delays/probs. So she has to get worse to get help!

can motiliy be tested in esophagus? and intestines? separate tests? Libby's BMs vary with what she eats. I wouldn't say she's constipated or anything. She doesn't eat well if she needs to fill her diaper... but isn't that normal to some degree?

what is manometry? can it be done on a 20 mo.old? what's an impendance study? can she cooperate with these tests? would a ph probe be worth doing? would it tell us anything that would change our approach?

we've had upper GI showing severe GERD, scintiscans with GE test ('normal"), endoscopy with (normal) biopsy and no damage seen.

When you say g-tube us always "long-term"--- do you mean 1 year? 2? 3+? Is 1 yr reasonable? Do you have to do night feedings? is there a way to tube feed and not affect oral feeding? I mean, she eats---just not enough! we don't want her to stop completely.

But she's not gaining and may still be losing weight... how long do you wait? It seems we shouldn't wait until it affects her dev. milestones... Of course it doesn't help that she has a twin sister of average sixe that makes her look even tinyer!

THANK YOU!!!!! : )

Feb 16, 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

NG tubefeeding can be done at any age, even on adults, it is used for short term, less than 3 months, but can be used and is used much longer. G tubes are not used for short term feeding. Usually, children are tried on an NG tube first to see how they respond and if they will gain weight before gtube is done.

Motility can be tested by manometry in the esophagus,stomach,intestine,colon,rectum,etc..It is done by threading long tubes with sensors into different organs like the esophagus,intestines and moving it around as it senses the muscle contractions to see how the system is working, medications may be injected during this time. These are all separate tests, and very invasive, and there really needs to be a high suspicion of having a motility disorder when you are having them done as they can be traumatic and even painful for a child.They can be done on young children, Jessica and I,lol, have both had manometry done on our children.

Her bowel habits sound pretty normal to me

Most people whose children have gtubes, in similar situations as your child, have them for YEARS.It really does set you back. I mean, if you have to, then you have to. Are you sure she wont qualify for Early Intervention, have you tried?

We have to do 24 hour a day continuous drip tubefeedings because of my childs health problems he cannot tolerate any volume in his stomach, and he still weighs less than he did a year ago despite this!

One thing to mention is that although doctors may have in mind what schedule your child will be on before tubefeeding begins, it all depends on what the child can handle. They may think that only night feeds will do enough, but if she cant tolerate a high enough rate, then she will have to do more. Most children are able to do boluses, of several ounces at a time, several times over the day.

An impedance probe will be more valuable than a ph probe, since you already know her acid is under control since she has no esophageal damage. An impedance probe is similar to the ph, but it also measures non acid reflux.

Has she had a modified barium swallow study?

Any symptoms of food allergy? frequently it is found that food allergies will cause kids to be FTT, and not eat well,also cause reflux symptoms.

Have metabolic reasons for not eating well and FTT been ruled out? Frequently MRI's of the brain are also done in this situation to make sure there is nothing there casing the issue

Prior to this we had maxed out many medications,did months of feeding therapy,everything we could.Brent's tubefeeding was intitiated via ng tube while being hospitalized for failure to thrive and severe gerd,chronic dehydration , we waited as long as we could. He was tubefed a while like that but ended up having severe esophageal damage and stomach damage, he was aspirating reflux and was very ill from it, and developed a dangerous paraesophageal hernia from all the intense vomiting. He had to have the fundoplication surgery immediately,along with repair and reconstruction of the hernia and open placement of a gtube for long term feeding, and he has been going downhill since. He sustained vagus nerve damage during the surgery and has developed bad dysmotility everywhere,he also has dealt with dumping syndrome,gas bloat syndrome,severe retching,aspiration of food,he has also been diagnosed with having eosinophilic gastrointestinal disorder,secondary esophaeal dysmotility,developed a nerve damage related pain disorder, has continued to have severe reflux despite surgery,allowed nothing by mouth,and so on. Developmentally though, he is on track and meeting all his milestones now.

Feb 16, 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
Yes you can do tube feeds at any age. My Grandmother just had one in for about 4 days. She had a bowel obstruction that worked it wasy lose, strange but true...LOL She had hers to suction out her gastric contents so she wouldn't vomit.

Jessica covered everything I would have, LOL

As far as tube feeidng and being todl it will be short term....it is alwasy LONGER than the DR ever say it will be. You get stuck in a pattern of they won't eat enought so you tube then the child is not hungry. It's a really hard pattern to break. Jedd still doens't feel hungry. We just feed him water and food on his shcedule without fail.

Jedd's NG tube was placed because of his Heart Defect. He was just about FTT at that age as well. He was VERY tiny. His heart was working over time. You could feel his hole through his chest when he was laying still. It was NOT good. you could feel the irregular rythm being created by the hole in his heart.

As far as not getting Early Intervention for Feeding issues because there is no delay in another area, Have you been told that???!!!!!????

Jedd has NO dealy (curretnly) in any other area and yet he recieves 1 hour of OT a week IN my home for his feeding issues.

I would pursue this heavily and not take NO for an answer. We have even done 2 one hour sessions a week and up to 3 when we were trying to prove Jedd needed extensive feeding therapy from a clinic long term.

As far as clinics doing a better/good job. They will do an amazing job. I will try to add some links to some places that do extensive therapies with kids with feeding issues.

I was amazed at the difference with our small local clinic verses the one at Richmond's Children's Hosptial. We have transferred Jedd OT feedign therapy care to ther ein stead and will not be seeing our local clinic at all anymore. We still have EI though.

Most of the major clincs do it form a behavoural approach. They need to basically "retrain" the child to eat properly. KWIM. For us tha means getting rid of the head turning, the biting of the straw, the other issues he has with feeding as well. He also needs to work on self feeding as he does none of this and he needs to learn to suck up his own fluids. I squeeze them into him now and he swallows them.

How does she act when you feed her?? Dose she throw her arms around and bat at the spoon/bottle or other utensils??? Dose she throw food, or spit it out, dose she yell, kick or scream????? Shake, her head from side to side....ect.

The hard thing is all of those physical issues can be being caused by pain. That is why Jessica Lynn and I have both siad to do extensive testing first.

In order for a child to EAT proeprely all medical issues must be resolved. A child in pain will NOT eat. Period. We tried. Believe me, we tried for over a year and a half. We got NO succes until the NG was out the G was in and we were on high enough meds. I have described feeding Jedd as shear WAR because it was. It wsa NOT fun. I never go tto hold my baby and feed him. EVER. By the age of 12/15 weeks he was proficient at kicking the bottle rout of our hands and punchign it wiht his fist. We had to strap him into a bouncy seat just to keep him still. OH I wish I had a video camera so we could see how far he has come. He still has his issues. But nothing like that. He was in immense PAIN. And NOONE was listening to us. He could quite literally bounce the councy seat up and down on my kitchen counter to get away from the enemy, FOOD.

That makes for a child who has learned food is bad. That is how we came to be in the boat we are in. His heart defect compounded with the GERD just made it worse.

I've said all that to say this....Jedd has come as far as he has by have GREAT therapist who work endlessly with him. He also has one stubborn MOMMA who wouldn't take NO for an answer from him....LOL :)~

I literally quite working and devoted 24/7 of my time to getting his pain under control, fighting ins. co. to get proper out of state testing and endlessly did his therapies with him at every feed to get him to eat. It has ben the hardest thing I have ever had to do in my life. And you know what, it has been worth every minute and every tear I have shed om frustration.

We have got to the point that we just can't get him to do solids. So we are calling in bigger guns. I know my limitations, and I am at my limit. I admit I need help.

Off to look for those links for you.

Feb 16, 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
Feeding Clinci Links
Here is KKI they are in Baltimore MD

http://www.kennedykrieger.org/kki_cp.jsp?pid=1408

Here is Hershey's Program in Hershey Penn.

http://www.pennstatehershey.org/web/feedingprogram/home

Here is Richmond's Program in VA where we went.

http://www.childrenshosp-richmond.org/CMS/index.php/services/feeding/

There are other small places scattered around. These are the big 3 on our coast for long term intense therapy. I believe they ALL offer in patient if they deem it nescessary. Be glad your on the East coast, the west coast choices are more limited, sadly. There are also many short term facilities like the one at Nationwide Chidlren's in Columbus OH. they ahve a 2 week out patient program. We spoke to them in person when Jedd has his testing done. It wasn't going to be a "good fit" for Jedd becasue I really think he nees something longer than that to break all his tried and true BAD habits.

TBH, if I didn't have to worry about money at all, I'd go to KKI. they are known world wide as one of th eleaders in pediatric feeding disorders. They see pateints come in from all over the place.

If you think you want to go, get the ball rolling now. We waited 3 months for our eval at Richomnd. An eval at KKi will be a longer wait, they are busier. Then you still get wait listed to get in after being approved. We *might* be looking at the fall for Jedd. So by the time we get in to a clinic it will have ben about 9 months of waiting.

Now we have atube for back up, so since you DON'T have a tube, you'll get bumped to the top, I am assuming. It is run on a needs basis. So for tha tI am grateful. Kids who need it more than Jedd deserve to get in boefore us. KWIM

I hope this list hesps.

Feb 17, 2009
jordyn'smom
Erica
Jordyn 11/30/04 DX GERD at 1month old
I have been watching theese posts and if you don't mind I have a little to add. Luckily Jordyn was only ng fed in the nicu for a week but she did have a GI that wanted to do G tube. We fought to get into a feeding clinic and the team was great.This clinic may be even closer than the others in the last post and they will even do inpatient to try and avoid tube feeds so they can work closer with the family durring meal times. It is in Pittsburgh and the place is called The Childrens Institute. > > > Website is www.amazingkids.org > > > Phone is 412-420-2400 This is a link to the functional feeding PDF brochure > > > http://www.amazingkids.org/childrensinstitute/userfiles/File/1.5FunctionalFeedingBrochure.pdf Like the others above have said tho you need to be sure that the pain is under control first. Good Luck and If I can offer any more help let me know.
Feb 17, 2009
zack'smom
Zack born 09/28/07 @ 31 weeks. Dx silent reflux @ 6 mo. Now not so silent. Switched to Elecare @ 9 mo. On Prevacid 15mg 1x daily. Looking to stop the puke and gain some lbs.
Puke stopped about 24 months and he's learning to eat...very slowly.
Still on prevacid and periactin.
I wanted to add that, although we are in California, Zack qualified for Early Intervention based SOLEY on his feeding issues. His developmental assesment placed him at or above his adjusted age for all area except food. We now have a feeding therapist twice a week and OT once a week. There haven't been any real changes yet, but it's only beena month and a half...this is going to be a long haul. My son is a vomiter...I'm afraid that until we can get that to stop that his solid intake will not improve. He puts things in his mouth, then scrapes every crumb off his tongue (sigh) or gags and vomits.
Check with your
doctor first!