Posted By Posting
Aug 27, 2009
mommy2k
liquid intake: need input
I am a little sad today because I have stopped bfing Kody eventhough I have supply to feed him it's time to stop. The only problem now is he's on neocate and he won't drink more than 3 ounces sometimes 4 at one time. He's only getting about maybe 15 ounces a day. That's probably a good day. I told the gi and he said as long as he has wet diapers and tears then don't worry about it. I shouldn't fret about it but it's driving me nuts. He'll eat his solids just fine but when it comes to drinking it's a different story. He's got dge, only empties 31% in one hour, so he goes really long times in between feedings but he's a really good solids eater. He'll eat solids all the time. His weight has no problem either because he's gained 3 lbs in 2 months. I just wish he would drink more. Anyone else have this issue? I can't figure out if it's the neocat that he's refusing too. I gave him some nutramigen (the liquid kind) mixed with splenda and he drank 4 ounces no problem. HHHmmm trying to figure this out. Any thoughts on this would be appreciated. Thanks!!
Aug 27, 2009
emibug
Kathryn, Pager Volunteer and mommy to Emily Mia 02/04/07. 3 years old with GERD. 30mg Prevacid and Pepcid AC. Mylanta needed for flares. Failed prilosec med switch. Tried and failed many med weans but GERD and pain are well controlled. Functional constipation. Reoccurring SBBO. Suspected IBD or autoimmune disease. Resolved issues: MSPI, CSID (acquired), Stage 2 kidney reflux, Chronic diarrhea.
Audrey Meadow 06/20/08. born 34/35 weeks. Still b/f and eats everything! ftt and chronic constipation.
emily went through her whole infant life drinking no more then 4 oz at a time and we were lucky if we got 20 oz in her a day and she did not eat solid foods. that's just want she needed she grew, she thrived and i worried and anguished but in the end she was fine lol

I think 3-4 oz at a time is a good starting point and 15 oz with solids is really not that bad. b/c of his DGE/reflux issues, and well the whole switch from breast to bottle and just change in general; it is probably throwing him for a little bit of a loop right now. give him a little more time and if it doesn't change bring it up again but imho if he keeps growing and eating solids i think it is probably okay to drink a little less milk
Aug 27, 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
The solids are probably passing though the system faster. They are mostly water. That could be why he like to eat them, maybe??? they also taste a bit better than plain non flavored nutramagin...LOL

I'd just keep a close eye on him, kids can be dehydrated and still have tears.

Aug 27, 2009
mommy2k
I guess I need to really remember that every baby is different. Just because the standards for what the doctors want them to drink is there doesn't mean I need to fret about it if it's not what he needs to be doing if everything is fine. I think I just needed to hear some other stories of kids being just fine without getting the liquids they need everyday. It's just really hard right now for both of us. I just worry about cutting out his bfing at night but we feel like we need to do this to see if his pain is something for sure in my bm. But I'll keep an eye on wet diapers for sure. This weaning stuff sucks right now. Thanks for the input!
Aug 28, 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
IF he breastfeeds well for you at night, can you still do those feedings??? BM is still the #1 best thing for a child to have esp, if you can eliminate things from your diet.
Aug 28, 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.
Most docs will tell you that if you offer a kid juice it will cut their formula intake...not so with Z..he will drink the same (really crappy) amount of formula whether he gets juice or not...so Z usually drinks 1 or 2 4 oz juice boxes a day. He also LOVES water...can you supplement with either of those? Sounds like his weight is good, so some water wont hurt him! We also LOVE ice cubes in the mesh feeder here...
Aug 28, 2009
vigilantmom
Ryan was born May 20th 2008. 9 lbs 2 oz. Ryan’s magic bullet was 30mg of Prevacid capsules mixed with Caracream from Marci-kids (I am forever indebted to the team at Marci-kids), Claratin for the mucos, and Mirlax for the constipation. Within 2 months of this combo he jumped from the 6% to the 50% for weight and continues to climb. Be strong, listen to your instincts. Read his story for more specifics that just might help you too - Karen
Are you pumping and freezing in case you change your mind or the neocate is not the magic answer for you? Sounds to me that you are not OK with stopping BFing so I would not put yourself in a spot that you cant change your mind. I did that early on with Ryan in regretted it. The doc thought I need to move him to soy from bf so I quit at 6 weeks. Turned to you have nothing to do with my milk but it was too late. OK for the fluid oz. Ryan like Z will not willing take much milk. Even now that he is on whole milk. I have even put strawberry Nestle Quick in it. He is 15 months old and he still gets one bottle after he falls asleep because that is how I get the most amount of milk in him. He will take juice and water especially out of a juice box. Now, early on getting him to take juice and water was a struggle. I had to start with a sippy cup with no plug, outside, when it was warm out. I let him make a total mess out of it. Basically.. made it fun for him. Little by little he would drink a little then a little more. Then I pulled him around in his wagon with the cup and the plug in it and again he drank more and more everyday. I had to take the stress and the focus off of it. It had to be on his own terms. I had to do that with finger foods too. Just putting him in a highchair would freak him out so I would start there, get a few bites till he freaked out, then took him outside and fed him or Allyson would feed him while I pulled him around the neighborhood in his wagon. (yeap the whole neighborhood knew when it was dinner time at the Kuhn household) Every day he would eat a little more at the table and I would have less to do outside. My goal was to getting him eating and drinking in doors before the snow started to fly. : ) First he ate all of his fruit, then his veggies then bread then we were just left to meat. Last week, we nailed the meat too. Thank goodness because it has been raining this week. Anyway the point of all of this was to remove the stress and the focus of eating and drinking. I know some people would say that is nuts but it worked and I had to do something different than what I was doing.

As far as the number of oz, yes, what they tell you is what to shoot for. I killed myself over counting ounces and to be honest I still count. Old habits die hard. What I finally resolved myself to though was 30 oz a day was where I was trying to get to, I didnt have to be there day one. I accepted that if he had a poor drinking day then I would make up for it with runny foods like jello, yogurt and applesauce. I just couldnt force the issue anymore.

Good Luck!!!

Aug 29, 2009
mommy2k
I'm currently not pumping. I didn't think I would have a hard time parting with bfing but it's just been almost 9 months of it and it's like been such a routine for us. I decided to stop for two reasons. I've been on elimination diet for almost 4 months now and he's not done any better. He also has a scope coming up on Thursday where he can't eat after midnight. Well he always wants to bf at night and I decided that it would be good now to stop bfing at night. I've been weaning him for over two weeks and haven't noticed a huge difference with the neocat. It is just frustrating to me because I thought it would help now he just doesn't want anything. I think it's his teeth though. I've been considering pumping at night until we decide if this is what I want to do. We're switching him over to nutramigen now. I think it's hogwash that his problems are allergy related when he's not doing any better on the neocate. Anyway I'm hoping I can get more than 10 ounces in him today. He ate at 3 ounces of nutramigen at 6 this morning and then decided to finally eat almost 4 ounces at 5. He bf a little this morning because he went all night bone dry. So that's only maybe 9 ounces all day. I'm hoping he drinks more before bed. Yikes! Trying not to stress about it because I know that'll make it worse.
Aug 29, 2009
johnniesnewmommy
I went through the same thing with Johnnie- he would only take 2 ounces at a time. I was worried sick. When we switched from nutramigen to the neocate he slowly started increasing the amount he would take. I doubled the scoops per ounce of the formula in an effort to get some extra calories in him and it worked great. He finally started gaining a little - or atleast not losing any. I had to give him a little pear juice mixed with his Miralax, so he was getting about 4 ounces of liquid in him as well as his formula. I was afraid to supplement with water or juice because I thought it would decrease his appetite but it really didnt change. The one thing that really helped was he started drinking in his sleep a lot. If you don't mind getting up several times a night to feed a bottle than he might take it better that way. I don't know why- maybe they are so out of it they can't taste it! LOL
Aug 29, 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
Did the GI tell you that going on an elemental diet now could skew the results of the EDG??? I would not change anything until the scope is done. JMHO...but I'd wait. That way you could know for sure if he is reacting to a regular diet, even if it's through your BM.

By doing the change now, you can clear up any EOS that could be present. Normally changes like that are done after an EDG is done. Then an elemental diet is tried and a rescope is schedule to see if there is improvement.

Aug 29, 2009
mommy2k
The gi was the one pushing me to put him on neocate and stop breastfeeding. He wants us to continue it. He didn't tell me otherwise which makes me mad. He's the nicest guy but he's frustrating me and the only reason we're still with him is because we have the scope coming up and he biopsied him for hirschsprungs. The second opinion was supposed to be on the same day of the scope. The gi seems willing to do the tests we want but keeps pushing the whole allergy thing on us. We aren't buying it because it's not correlating at all. I have only enough bm to give him in the morning and at night now. He's doing well on the nutramigen right now and drank almost 4 more ounces for me before bed. He's only had about 11 or 12 ounces of formula/bm and maybe an ounce of juice. I will try to feed hiim in his sleep tonight to get extra fluids in him. The gi did say he was going to test him for allergies but I thought that it wouldn't be accurate. Does anyone know what he would be looking for on a scope besides damage? He didn't really explain to me what he was looking for so I was wondering what I should be asking to be tested for or look for? Thanks
Aug 29, 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
With the EDO they will look for visible damage, EOS count. Celiac's Disease. They will also be able to test the BX for EE disorders. But....IDK......if your supply is down, you're really stuck....I'm soo sorry. I would just keep BF as much as you can.

We were always told not to change things prior to a scope except coming off of meds for it.

Also, things can "look" fine to the naked eye but the BX can tell a different tale.

Aug 29, 2009
vigilantmom
Ryan was born May 20th 2008. 9 lbs 2 oz. Ryan’s magic bullet was 30mg of Prevacid capsules mixed with Caracream from Marci-kids (I am forever indebted to the team at Marci-kids), Claratin for the mucos, and Mirlax for the constipation. Within 2 months of this combo he jumped from the 6% to the 50% for weight and continues to climb. Be strong, listen to your instincts. Read his story for more specifics that just might help you too - Karen
Likely he is looking to see if he has Eosinophilic Esophagitis. EE presents like GERD but different causes and different treatments. While the GI is doing the scope to look for damage he will snag teeny tiny biopsies along the way. Dont worry, they are about the size of a pin point. They will put the biopsies under a microscope and actually count the number of eosinophils. I forget the number cut off that they are looking for. They are also looking for rings in the esophogis. EE is allergy induced. If that is your culprit you will likely be changed to elemental formula and changes in what his is eating for solids.-- That is what I was told by my GI anyway when they scoped Ryan. He said they do that when kiddos dont seem to be responding to the PPIs and continue to have problems. Ryan was negative for EE. Here is a link for you to review. http://www.apfed.org/ Click on About EE. PLEASE do not stress out that this might be your issue. Its not very common. It is just easy for them to test for this while they are already in there doing the scope and it is good to rule it out. I am no doc but if I had to guess I would say that the teething is at the root of your issues. Teething was not kind to Ryan. We were where you are now with the low intake. Just hang in there. You are close to being on the other side on this thing. -Karen
Aug 30, 2009
jgbennett
Ginger Bennett
Mom to Stanton, 6/12/2008
dx with GERD at 7 weeks. dx with EE at 21 months
Past Life - Early Intervention Specialist and Eval Team Member
Every baby is different. I was only able to breastfeed for 9 days. I got a horrible staph infection after my c- section. I pumped and dumped for 36 more days, but when my iv meds were extended for 60 more days, I knew I couldn't handle it. My little one is 14 months old and still only takes 4 oz every 2 hours and does not eat solids! I offer him 4 oz of a smoothie (yougart, juice, water) on the hour every hour . It's exhausting and makes for really long days.
Aug 30, 2009
mommy2k
Jeddsmommy- I can't believe my gi wouldn't tell me to not switch things yet until after the scope. Of course he didn't even know that we were having a scope when we were at our appt on Tuesday. He's just too busy. I have him on nutramigen right now and he's drinking more for me and I bf this morning. It didn't even affect him that I had dairy yesterday. See no correlation on allergy related things. Karen- Thanks for the link. I doesn't sound like Kody has that but you never know. He seems to respond to the ppi's but I think it's the problem of being able to get his stomach empty enough. That rarely happens. I think it's definitely the teeth that our bugging him. I hope that they come through soon. They are really swollen today. But he's drinking for me which is a great relief considering I thought he was on the verge of dehydration yesterday. I hope the upswing will be here soon. It's a struggle and I know that you understand that because it sounds like Ryan did the same things.

thanks everyone for the input and stories. I hope to get some answers from the scope. This whole thing has been draining on us.

Aug 30, 2009
vigilantmom
Ryan was born May 20th 2008. 9 lbs 2 oz. Ryan’s magic bullet was 30mg of Prevacid capsules mixed with Caracream from Marci-kids (I am forever indebted to the team at Marci-kids), Claratin for the mucos, and Mirlax for the constipation. Within 2 months of this combo he jumped from the 6% to the 50% for weight and continues to climb. Be strong, listen to your instincts. Read his story for more specifics that just might help you too - Karen
If you are concerned that his stomach is not empty enough when you are giving the PPIs you should really consider ordering the Caracream from Marci-kids. It wont be an issue anymore.
Aug 30, 2009
mommy2k
Karen-How did you get in contact with marci-kids to get the caracream? I wanted Kody on a different ppi but the gi said that the prevacid was basically the same. It wouldn't make a difference. I've heard such good things from you about the caracream but I also see you said it's pricey. I'm not sure how to get this caracream and does insurance cover it?
Aug 30, 2009
mommato3
I can't stand the roller coaster ride. It is so crazy to be near dehydration one day and the next be drinking again. Big hugs to you. If it makes you feel any better, our new GI is like the guroo of EE. Like the best EE dr in the world. This is his specialty. Anyhow, Holden's formula was changed to elemental like 6 weeks before the scope. He wasn't concerned about it. Holden's scope came back clean as a whistle other than an open LES muscle. But even on an all elemental diet Holden was still having problems so he doesn't think EE is it at all. So I wouldn't stress about changing the formula before the scope unless everything was dramatically better after going to an elemental diet. Good luck. What time is his scope on Thursday?? Is this his first time to go under anesthesia? I will be praying for you.
Aug 30, 2009
mommy2k
Hey Tracy- That's good to know about the formula not messing things up to bad. He's on nutramigen and doing much better on that. He drinks it like a champ but still have to flavor it with splenda. I have no idea what time his scope is going to be on Thursday. I'm completely nervous about it because this is his first time under anesthesia. I'm also not sure how we're going to do with the not eating after midnight. He still wants to have a bottle in the middle of the night. I think it calms his stomach down because all I can hear is his reflux when he wakes up. I keep thinking this will give us some answers but it may not at all and then we're back to square one on trying to figure things out. I wish that he would be more comfortable. His sleeping is still horrible. I hope right now it's because he's teething but I'm not sure. Hopefully we'll be able to chat soo. Is Holden still doing well on the periactin? I'll let you know how the scope goes. I might be calling you frantic later this week before the scope. lol Jennifer
Aug 30, 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
(((HUGS))) GERD is a roller coaster NONE of us want to be on it is the hardest thing my DH and I have ever done, ever. It is draining beyond degree, you are right. Just keep doing what you are doing. It will be OK.

As far as sleep, do you have him elevated at all?? just to see if that will help?? It did with Jedd.

Aug 31, 2009
mommy2k
Jessica- Somedays I think that I'm not going to be able to keep my sanity and then we get some relief. I know you know all about how tough it is. I also know God doesn't give me more than I can handle so I know that I can do this. I just look at stories like yours and know that the light is at the end of the tunnel. It also puts things in perspective for me.

As far as elevating him, he's elevated right now but ends up in our bed most of the time. He ends up laying on his stomach or side so he doesn't stay elevated. He never sleeps any better when he's upright. I still need to find the trick to keep him upright. He's a mover when he sleeps so he won't stay upright most the time. Oh well just chugging along here. I'm just hoping that the day will come when he just decides that sleep is actually important. lol The hard thing is knowing if he's in pain or just behavioral. Something in my gut says it's pain because I can hear him refluxing when he wakes up. Yuck!!

Aug 31, 2009
vigilantmom
Ryan was born May 20th 2008. 9 lbs 2 oz. Ryan’s magic bullet was 30mg of Prevacid capsules mixed with Caracream from Marci-kids (I am forever indebted to the team at Marci-kids), Claratin for the mucos, and Mirlax for the constipation. Within 2 months of this combo he jumped from the 6% to the 50% for weight and continues to climb. Be strong, listen to your instincts. Read his story for more specifics that just might help you too - Karen
David's email address from Marci-kids/Reflux Solutions lab is stockd@missouri.edu. Shoot him an email with your sons current weight and age and how much Prevacid he is on day and if it is a split dose. Let him know tht he has DGE thus it is very difficult to administure his PPI properly on an empty stomache. Let him know that you heard that Caracream/Buffer Babies has worked really well for kids where timing the PPIs is challanging and ask if you can purchase it directly from them. Their website is www.marci-kids.com. Super super nice guy. No hassles at all.

As far as the cost goes... Ryan is on 30 mg of Prevacid a day. So one bottle of the compounded mixatures lasts 8 days. If Kody is on 15 mg a day then it will last you two weeks. One bottle cost $13.50 plus you still have to buy your prevacid from your pharmacy.

Prevacid. You will need to get your ped or your GI to change your prescription for the capsules from the solutabs as it does not work with the solutabs. Email me at karenkuhn@msn.com if you need advice on how to get that done. Would rather not post that here. : )

Insurance- Insurance didnt cover it for us but it is worth asking. Insuranace will cover Zegrid which is exactly the samething except that it is already compounded but I couldnt get my GI to make the switch because he "didnt study under that in school". Now that my pediatrian has seen what great results we have had she is willing to change the script to Zegrid if I want. I still have a bottles left of the caracream so I am going to use that up first.

Check with your
doctor first!