Posted By Posting
Jul 08, 2011
diana
NEED HELP weight gain w/ elecare and reflux
I need some help. My 3 year old daughter has severe reflux, recently in april had her second Nissan done and this time they stretched out the bottom of her stomach to be wider so when she does reflux there would not be so much pressure on her Nissan. Right now my major concern is I can not get her to gain weight. For the past year and half she has been around 24lbs. She is currently on Elecare 38 cal. mixing it 1 1/2 cups plus three scoops to 22 1/2oz water. Her rate is 55ml per hour for 11hrs plus two 90ml bolus's during the day. The 55ml per hour seems to be a good rate for her to handle and trying to increase it makes her reflux more. To get to my point the volume that she gets now is about all she can handle without getting to much reflux. Is she getting the correct mixture of formula with water considering everyone seems to have a different opinion on how to make this stuff? Is there something else I can add to it to give her more calories without increasing volume? Does this formula seem to upset her stomach at such a high calorie rate especially after a surgery, because she did have a minor procedure done two weeks ago and her amount of volume she is able to spit up has increased. HELP, HELP, HELP I am a very capable mother who has been dealing with this for a very long time but this issue now has got me stumped.
Jul 08, 2011
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 am at work, so I will get back to you after dinner once we get home.

Have you had any motility testing or a Gastric Emptying Scan to see if her stomach empties slower than normal?

Also, have you had any testing done to see if there is any type of malabsorbtion happening?

Jul 08, 2011
diana
We haven't had any testing done yet with her except one to see how her stomach was emptying. That test produced normal results. She was gaining weight just fine until about a year ago when we found out we got the wrong recipe for mixing elecare and switched to the correct way of making it. Since then we had multiple surgeries and two Nissan repairs. I was able to talk with her dietician today and we are going to go back to a 32 cal formula but add an amino acid powder to add more protein to the formula to help with weight gain. She seemed to handle the 32 cal just fine before her last surgery a few weeks ago but just was not gaining. If the addition with the amino acid powder does not work then yes I will be taking her in for some testing. Thank you for your suggestions.
Jul 09, 2011
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
Sorry it took a bit for me to get back. Life got hectic.

Since you just had a Nissen repair done, it might be a good idea to have motility testing done again. Just to make sure no nerves were damaged while re doing it. It an happen. I know a young boy who had motility issues directly related to his Nissen...rare but it happens.

more probable is that you have just had some major surgery done, and, you may be trying to push it too far too soon.

Jedd's motility was always worse after a surgery. After his G was placed it took about 6 weeks just to get him back to his pre surgery baseline. We were on continuous as he would just not tolerate any bolus feeds at all.

Just about right after we got him back to baseline, he caught hand foot and mouth and that really really really threw him for a loop. Took another long while to get back to baseline feeds, it was just terrible timing.

I don't know but it seems like you have the formula concentrated really high. You are starting out at the 32 Cals per ML and then adding boosts on top of that. That's pretty high and the more cals per ounce, the longer it's going to take to get through the system.

Also, since they were Nissen repairs, did the surgeon say anything about stomach size? Was it affected at all? Sometimes it can be.

I'm sure I'll have more questions as we chat back and forth.

Jul 10, 2011
bellysmom
is it possible to add duocal?
Jul 11, 2011
diana
The 32 cal formula is working alot better for her with the reflux. She is still refluxing but not formula and only secretions. Her reflux always seems to get worse for her if she is doing alot of crying. Especially after a surgery she is afraid when I leave the room after she falls asleep that something is going to happen to her. She's old enough to know what is going on. Her boluses are even staying down now that we went back to 32 cal. Hopefully with adding this protein powder this will help her gain some weight. It is such a hard balance between trying to give her the volumn she needs to gain weight but not making her stomach upset that it comes back up.:( To answer some of your questions, when they redid her last nissen they also stretched out her pieloris (sp?) at the bottom of her stomach to allow formula to go through easier and help when she did reflux not so much pressure would be put on the nissen. Stomach size after this last nissen was reduced a little but not to the point that it effected how her feedings were going at the time. Yes usually after a surgery her too would take awhile for order to come back into her life. I am fortunate that we have a dietician that works with our GI to discuss options for her. I do think I might have pushed the calorie increases a little to fast. I was giving her a week between each time we had changed them, but with surgery healing time it was hard to decide if she was having pain from healing or if it was the formula bothering her. Thank you for all your help.
Check with your
doctor first!