I am so bummed about my son right now. He used to be so huge and has taken a plummet down to the bottom of the chart just in the past few months. He has silent reflux and it does not *seem* to bother him because he takes 15 mg of prevacid, but it is pretty evident to both me and his ped after she looked at my journals of his intake amounts and patterns over the past few weeks that he has DGE. I lost my breastmilk a month after he started solids because he preferred the solids and did not have room for both. I was forced to start giving him formula and the only one he will drink he is showing a mild allergic reaction to :mad: . He is also only taking in 16-18 ounces per day with one 4 ounce jar of pureed foods. He is so skinny and he used to be so chunky when he was breastfed only!!!!! I am currently pumping every hour and a half to get my milk back and taking a bunch of supplements and so far I get drops. The plan is to feed him all breastmilk again with the hopes that because it digests so much quicker, he will take in the right amount to thrive. He isn't a complete failure to thrive, but his peds words exactly was "He is not thriving, this is not good, and I am concerned". So we see the GI on the 20th. My daughter is a VIP in their office (which is why we have a new patient visit with only a two week wait), so I plan to call him on Monday to ask for tips while we wait. Anyone know where to get those breastmilk fortifying packets? Prescription only maybe? If we have to stick with formula, we will have to change to a milk/soy free one that he hates and probably consider motility meds to help him out but I refuse reglan. I am just so frustrated :( .

Carla I am so sorry that you are having to go through all of this. The packets we got for Shanea were from 1st the NICU then the companie directly, I know that the pharmacy across the street there form CHOC sometimes has it or can if they are in a good mood get some for you. Another good place would be maybe the CHOC pharmacy. I know it's scary down there and all but worht the plumett to the basement :) (I hate that basement it creeps me out)

Oh, and I have been having great luck with email communication with Dr.G. I can forward you his address if you don't have it, he or N. review them daily and reply pretty promptly.

Carla I posted a reply to you over in the DGE board :) I'll spare you and not put it over here too :)

I would LOVE that!!!!! I want to pick Dr. G's brain about what to do in the meantime with Gavin. We see him for Gavin's first appt with him on the 20th. I made it for Chelsea though, so I want to give him the heads up for what it is really for! (He gave me permission to do that awhile ago if needed!!! hee hee). Please email his address to me. I will check the pharmacies, so would G have to write a script for it?

I'm not sure if the human milk fortifier would be helpful to your son because its milk based. Since your son is MSPI, have you tried a milk/soy free formula ? I too have been breast feeding(expressed) and I have to add formula to increase his calories to 27 kcal per oz. My son is and has been having weight issues for a few months now. He also limits his intake. We have to resort to sleep feeding and force feeding him. I think he has DGE but my GI doesnt think he has a problem since he doesnt vomit. I'm not sure I believe him. I think the stomach emptying test would be beneficial to confirm a dignosis. Especially before any meds are given. I agree with you about reglan. I dont want to ever have to use it because of the fear of side effects.

As for your milk supply, have you tried drinking Mothers Milk Organic Tea. I drink several cups a day and it has helped my supply. Also, the biggest thing I have done to increase my supply was to pump in the middle of the night. Your prolactin levels are highest at night (roughly from midnight to 5:00 a.m.). Pumping during those times helps to increase the prolactiin levels even more, thus increasing your milk supply. I just started pumping at night a couple weeks back and it has helped me boost my supply. Granted I'm not making 30+ oz a day like I once was. But I'm also building back from only making 12 oz a day.

Here's a link for human milk fortier: http://www.meadjohnson.com/professional/products/humanmilk.html

Best of luck with increasing your milk!

Hi
I am so sorry you are going through this. Sarah also doesn't drink alot. I give her expressed breast milk and fortify it to 27 cal/oz. Like lisaann said the breast milk fortifier is milk based. We use nutramigen to make the breast milk 24cal/oz then add oil to make it up to 27cal/oz. You have to be careful with the amount of formula you add to the breast milk beccause the kidneys can have trouble with a higher solute load. About the DGE Sarah didn't vomit very much either- like once a day sometimes twice but she was( and is) hardly ever hungry. Sometimes she would go a couple days without vomiting. She definitley has DGE. She had he gastric emptying scan done to diagnose it. I hope you can get your breast milk back but if you can't I don't think it is the end of the world. Did you try nutramigen or maybe neocate- those are easier to digest since they are broken down.
karie

Thanks to all of you. I am going to call our GI tomorrow to ask about what are good options for Gavin.

I emailed you that info Carla. Ask him when you email about the fortifier he'll know where to get it.

Please keep us updated, will you? I don't have any advice, just know that I am here and listening :-D

I am bummed that the fortifying packets for breastmilk are milk based. My GI's NP confirmed that today. Another frustrating thing is that when I hand express milk, I get some squirting out but when I pump, I get nothing squirting, just drops. It feels like it is coming back though. Yet more frustrating things, he wont latch on even for a second to help out with this process so I am wondering if he will ever drink from my breast again! Pumping all the time is sure a lot of worK!!!! I fed him a bottle at 3:45 this morning although he normally sleeps through the night, thinking he would get closer to a normal intake, but the little stinker just compensated by drinking less throughout the day. He just does not want to drink. He actually asks for solids and is starting to want more table food. I know it is probably him less hungry for fluids but he will flat out refuse the fluids sometimes. How I can I say no if the only thing he wants to eat is a banana?! Yes I realize how slow a banana digests and how constipating it is. What is it about kids only wanting what is not good for their little bodies?!:???: :shock:

The plan is to get him an upper Gi and a blood rast testing and an evaluation with a feedng therpapist, then bring the results to his updated GI initial consult on February 1st. It was changed from the 20th to the 1st because Dr. Grant wanted an hour long appt as opposed to the 15 we would have gotten if we brought him in for an appt scheduled for Chelsea's check up (even though he typically spends longer with us most days).

That's all for now!!!:-D

I am bummed that the fortifying packets for breastmilk are milk based. My GI's NP confirmed that today. Another frustrating thing is that when I hand express milk, I get some squirting out but when I pump, I get nothing squirting, just drops. It feels like it is coming back though. Yet more frustrating things, he wont latch on even for a second to help out with this process so I am wondering if he will ever drink from my breast again! Pumping all the time is sure a lot of worK!!!! I fed him a bottle at 3:45 this morning although he normally sleeps through the night, thinking he would get closer to a normal intake, but the little stinker just compensated by drinking less throughout the day. He just does not want to drink. He actually asks for solids and is starting to want more table food. I know it is probably him less hungry for fluids but he will flat out refuse the fluids sometimes. How I can I say no if the only thing he wants to eat is a banana?! Yes I realize how slow a banana digests and how constipating it is. What is it about kids only wanting what is not good for their little bodies?!:???: :shock:

The plan is to get him an upper Gi and a blood rast testing and an evaluation with a feedng therpapist, then bring the results to his updated GI initial consult on February 1st. It was changed from the 20th to the 1st because Dr. Grant wanted an hour long appt as opposed to the 15 we would have gotten if we brought him in for an appt scheduled for Chelsea's check up (even though he typically spends longer with us most days).

That's all for now!!!:iconbigg:

Merged the other posts from DGE board with this one.

Carla,
Glad to hear you have testing scheduled. I hope it gives you some answers. Have you had a stomach emptying study done? What symptoms of dge does he have?


Oh yes I know how fun it is to pump around the clock. I've been doing it now for 6 months. The last time Noah nursed was 5 months ago. Its sad for me, but in the long run I had to find an easier way to get food into him since he wasnt latching on right at the breast. I would spend over an hour trying to get a complete feeding into him. He would fall asleep constantly! Its just too bad that the bottle hasnt proved to be any easier. Now I have to force feed him. Well hopefully your supply comes back with all the extra pumping. What kind of pump do you have? That can make a huge difference in maintaining your supply.

Thats great that he is asking for solids. Atleast he is showing interest in food! And bananas have lots of calories. I feed Noah pureed bananas all the time. Thats the only food he seems to like. I even add a little formula to it or even a tad of butter to boost up his calorie intake. Since he still gets breast milk he hasnt had an issue with constipation from the bananas.


My little guy is verging on FTT too. How much does Gavin weigh?

Gavin is almost 17 pounds-- a few ounces short. He is 27 inches long. He seems to be having a growth spurt yesterday and today as he seems so much more hungry than normal--I like that! It's bringing his intake to near normal all of a sudden, hopefully it will continue for awhile!!! :-D

I like the idea of adding something fattening to the banana, except that he holds a whole one in his hand and eats it like a popsicle. He is allergic to milk so butter wouldn't work, but the breastmilk idea is great if I ever get it back. :shock:

He goes in for an upper gi with a small bowel follow through tomorrow morning. Next day service, I was very impressed!

I have the pump in style by medela and it's okay...I may rent a hospital grade one next week f I don't have results by the end of the week.

I'll let you all know how tomorrow goes....I just hope whatever it shows is reliable. If there is something, I pray that it shows---my daughter's first upper GI did not show a large hiatal hernia that was seen on an endoscopy 6 hours later. I just want it to be reliable, then it would be an ideal test! No gastric emptying test yet, we are starting with this. With the small bowel follow through, they keep taking pictures every 15 minutes until it is gone from the stomach. Same idea, just not quantifying amounts like with a gastric emptying scan.

Glad you are getting some tests. Hope they go well. You might need the hospital grade pump to get your breast milk back. I have been pumping for almost 7 months now- yuck! and I use the hospital grade one. They said you need to use that one to maintain your milk if you are not nursing.
karie

Let us know how the testing comes back.

I too have the Pump N Style, and have had good luck with it. But like Karie said, a hospital grade pump might work better for getting your supply back. Lactina is a really good and compact hospital grade pump. I used it with my other two children if I couldnt nurse. It had major suction! I think the disclaimer on the pump says to beware of saggy boobs after use :razz: .

Good luck tomorrow!