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TCA

Tried Neocate 1+ In Feeding Tube Last Night

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Well, we are still on a quest to find a formula that would work in case my milk supply goes down. (I only have 7 oz. ahead in the freezer). The nutritionist is really pushing this since I am Megan's only source of food and sometimes after you've been pumping as long as i have the supply will dwindle. I have to work so hard at having enough for her and it gets soooo discouraging sometimes. I am gluten-free, dairy and casien free, and egg free. This all seems to be helping her and I am so thankful, but I am sooooo tired. A tired that I cannot even begin to explain. I still want to continue pumping, but it would be nice to have something as a backup so that there's not so much pressure. I don't know what would happen to her if something were to happen to me so that I couldn't pump and that scares me.

Last night we tried Neocate 1+. She started vomiting after 3 hours. We halved the rate to 25 ml/ hr (she runs at 60 on breast milk mixed with avocadoes and prunes) and she continued to have horrible reflux and vomit every 2-5 mins. I even gave her an extra prevacid dose to try to help with the reflux and saw no difference. I finally just turned it off at 5 this morning. She was able to fall asleep for a couple hours about 10 mins. later. I was up all night with her and she is so lethargic this morning. The nutritionist stressed that we need to try this 3 nights in a row to give it a chance to work. My husband said that if she wants to try it that bad, she can come out here and walk the floors with her all night. I think I agree.

Has anyone out there had to give Neocate a chance for 3 days before it worked? We're fighting so hard to put weight on her because of her upcoming open heart surgery and I'm afraid this would set us back so far. She also gave us Neocate Jr. to try if the 1+ works, but she seemed to think the Junior would be harder for her to tolerate. I don't really think either are going to work, but want to give it all a fair try.

She gets sooooooo sick on all the formulas. The one common ingredient among all of them is corn syrup solids. I wonder if this could be her issue. She's been tested for corn allergies and it was negative. I've eliminated it from my diet with no change, but then realized her heart meds have corn syrup and I can't skip those. Any thoughts?

Help!!!!!! I'm just too tired to think anymore.

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Wow, TCA. Bless your heart, you have a lot on your plate here. I'm going through a scary situation too, just different. I don't have an answer for you, but I just wanted to tell you that I've said a prayer for you and your little girl this morning, for guidance, comfort, peace.

Hugs,

Mart

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She might have an intolerance to corn, which won't show up on allergy testing. Especially if the reaction is delayed.

She may need to get her heart medication made specifically made for her by a compounding pharmacy, so it won't contain corn starch. I think you're onto something here.

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T--I wish I could help here, but I just have no experience with these things. I want to say that I'm thinking about you and Megan, and praying that you find the answer to her feeding problems. I can't even imagine the stress that all of this puts on you, physically and mentally. Bless both of you :)

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Oh, how awful for you, T! Do you think it might work better if you mix a little Neocate with a lot of your milk, and gradually increase the amount over several days (or weeks)? That's how we were able to get my oldest son to tolerate cow's milk. I think changing what's going into her tube cold turkey might be problematic whatever you put into it if she is so sensitive, but maybe you can avoid rousing her sensitivities by doing it little by little?

Is anybody available to help you out at all? You need to make sure you're eating and drinking enough. I know rest is something you get very little of, but it sure helps milk production. Could someone from church or a neighbor come over for a couple of hours so you can snooze with the baby, or can someone help you with laundry or housecleaning once a week or so?

If it gives you any optimism, I nursed/pumped with my first for 2 1/2 years, nearly 2 years with the second, and 2 1/2 with the third before I gave out--and my milk productioin didn't give out, my sanity started to. I know that beyond-tired feeling.

Hang in there just a little longer. I'm sure something will work if you introduce it very slowly (say, one part New Formula to 10 parts Your Milk, all mixed up before you put it in the tube--if that works, don't increase the ratio for at least a week).

Thinking of and praying for you...

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Thanks for all of your prayers and support. All of you really do help me to keep my sanity on days like this. My sister in law was here today, but I'm trying to use the time to get caught up on housework since it is totally out of control with everything I've had going on. Then the bathroom sink drain stopped up, so I spent most of the day working on that, unsuccessfully. She keeps the 3 year old busy, at least.

Meg started feeling a bit better later today. I've thought about what you suggested about introducing something slowly Fiddle Faddle, but I have reservations. My gut is telling me this might be corn related and I don't have enough breast milk to risk mixing it and then having to throw it out. I guess I could try a little. Her eczema is soooo much worse today, which again leads me to think food allergies/intolerances that might be overlooked. I called her allergist again today, but the last batch of blood work has not yet been sent to him from the hospital. Hopefully I will hear from him tomorrow.

I talked to the nutritionist this morning at length. We were already mixing the formula at a weaker concentration than recomended to get her started and she was very surprised that she couldn't handle it. The only other baby she has seen that couldn't tolerate Neocate has a corn intolerance, so maybe I am on to something here. She said to go back to what we were doing before and she is going to regroup and talk to some collegues. At this point, though, our main priority has to be getting her to gain weight for surgery. We can't keep monkeying around with things and expect her to gain. She is gaining nicely on my current concoction. I told her we might do one more round of trials if she finds something else, but I'm scared to push it any closer than that to surgery. We just have to get her fattened up because this is going to take so much out of her.

Please pray and pray hard that I can keep up with her with my milk production. If I stop and think about it I just get overwhelmed and I am not usually easily discouraged. I guess it's just the exhaustion catching up with me. My husband helps all he can, but he has to be able to function at work the next day, so I try to take all I can off of him. He's also a diabetic and needs his rest to help keep his sugar under control. We definitely need him to stay healthy. My dad has mono and my mom just broke her foot, so they aren't able to help right now. Friends from church have been offering, but we try to minimize exposure to a lot of people because Megan's immune system is so compromised right now and a cold could do more harm than I even want to think about. I know this too shall pass. I just have to wait for God's plan to unfold! :)

Thanks for letting me vent. I feel better now. If anyone has any other ideas, please let me know!

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TCA I think your on to somthing with this corn, have you looked into , as Ursal mentioned a compound pharmacy for her haert meds? We had to do that with our son's priolsec when he was on it. Find a great one near us... but its a bit of a hike for you, Im sure theres one closer to you....

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TCA I think your on to somthing with this corn, have you looked into , as Ursal mentioned a compound pharmacy for her haert meds? We had to do that with our son's priolsec when he was on it. Find a great one near us... but its a bit of a hike for you, Im sure theres one closer to you....

A lot of her meds are compounded. I'm going to call in a minute and ask about it. It's about 40 mins. away, but we live out in the country so everything is quite a drive. Is your son corn intolerant or was it just because of gluten?

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A lot of her meds are compounded. I'm going to call in a minute and ask about it. It's about 40 mins. away, but we live out in the country so everything is quite a drive. Is your son corn intolerant or was it just because of gluten?

Niether :D At the time it was the only way to get the only med that was working for him in the dosage that was needed. Pluse they flavoered it, heavly (it was about the worst thing I ever tasted!)

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Would it be too crazy to asak the people from church who want to help if they could wear masks and gloves and help you house-clean and deal with the toilet? I know, I know, I'd have problems asking something like that, too--but that is what I would do for you if I lived near you! Besides, if they are helping with the cleaning, then whatever cleaning products they use might kill the germs, and you would be spending time with the kids, not them, so exposure might be minimized?

I'm thinking you're probably right about the corn, not because I know anything about it (I'm clueless about allergies and intolerances), but because you have such good instincts about Meg. If you are right, then we need to be thinking of ways you can rest and keep up your milk production. I know it probaably sounds like torture, but would it be possible to add one or two more pumping sessions a day--just for a few days? That might be just enough to get you producing a few more ounces--and then you could go back to the regular pumping schedule and you'd get more per session. Do those herbal teas that claim to promote lactation help? I think Yogi Teas makes one. Are there any potential allergens in something like that?

Let me know whatever I can do to help.

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That is a good idea, to drink something that helps with milk production. I heard that raspberry tea will help with lactation. You never know, it's worth a try (and at the very least, it tastes good and would be something nice to do for yourself).

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yudsmom - Thanks for the suggestion, but Megan couldn't tolerate that one either. I just got a can of it out and it has casein and she has a milk allergy, so that won't work. maybe that was her problem with that one before. I guess I'm grasping at straws here. So far she's tried: Human Milk fortifier, Enfamil, Isomil, Pregestamil, Nutramagen, Alimentum (both premixed and powder), Elecare, MCT oil with Polycose, Compleat Pediatric, and Neocate 1+. We've tried varying concentrations of most of these too. She vomits with each of them and I mean a lot, like ever 5 mins.

I was able to check all but 3 of her meds today and haven't heard back from the others. so far, they're corn free. I am still eating corn for now, but if all of her meds check out to be corn free, i'll start eliminating that tomorrow. I just don't think it would be a good trial until I figure that part out for sure. She's not on as many meds as she was the last time I tried corn. Plus we weren't aware of her milk and egg allergy at the time. I guess it could be all of those things superimposed on top of each other. I'm just thinking while I type here.....

As for the herbal teas, good idea, but I'm already doing it. I can't tell it makes any difference, but I'm doing everything right now. I've tried to just step back and be objective. We have enough milk for tonight. If I can just get some rest tonight, then I'll have a better day of production tomorrow. She hasn't gone without yet, and I just have to have faith that she won't. God will provide. Not trying to get religious on anyone, neccessarily, I just really need to lean on my faith right now!!!!

I'm also pumping 2 extra sessions now, 6 instead of 4. By tomorrow that should help more. time is my enemy with 2 kids and a house that is falling apart. I've just got to get back on top of things and have mind over matter. BTW - I finally fixed the drain tonight, so now I can call the plumber and cancel saving us $$$ we need right now. there's one victory for the day!! :D I can just see our preacher bent over it with his gloves and a mask on, though..... :D Seriously, though, thanks for offering all these suggestions. I did get one girl from church to come help some just with folding laundry. I'm like 15 loads behind with folding, but getting caught up now. It's so hard for me to ask, but I guess I'm being humbled.....

My house is still embarrassingly dirty, but improving a bit each day. I'm trying to tackle one project a day. I just need a little order in my life and this is helping me to get it.

thanks so much for the suggestions. I really do appreciate it. I'm just so thankful that we have found a combination that works for Megan. If I hadn't been so adamant about breastfeeding I don't know where we'd be now, but I know she wouldn't be as healthy as she is. Hopefully we can figure out the rest of it soon. For now, though, I just need to take a step back and breath. I hope you all have a good night and keep the ideas coming. I'll try just about anything that's legal at this point. :blink:

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My step Mom mentioned goat's milk. anyone tried this? I checked it out and the calories are about the same as human milk. I e-mailed her nutritionist about it. Just wondering what you guys think....

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Thanks for the advice. So far Megan's slept peacefully through the night, so the past 4.5 hrs has been restful sleep. I'm pumping, then back to bed to rest some more, hopefully!

I'm open to any recipes, but she is allergic to milk, so I doubt she could do the dry curd cottage cheese. I've never heard of this, so correct me if it is not a dairy product.

Thanks for the input on goat's milk. I'll let y'all know what the nutritionist says. I'm very tempted to try it to have a backup, but I'd like to have at least a little input from anyone who's tried it first. I've seen it in cans and cartons at the grocery store before and even tried a little once when df/cf with my son. I wasn't impressed, but who cares what it tastes like going through the tube, anyway?

BTW - what is Keffir?

Thanks!

Gosh, I feel for you.

Take all the help that people are offering you. No one will be coming round to judge your cleaning, and if they can offer practical help I really think you should take it. I can understand wanting to whizz round cleaning everything before letting anyone in the house, but you really need your rest. There are times when you just need to let go and take the help that's offered. If that means having your pasteur mend your toilet so be it!

I can't offer any advice on feeding babies. I'm sure you're doing all that's humanly possible. I know goats' milk is generally less allergenic than cows', and it works for me as yoghurt or keffir but I haven't dared try it neat. I hope your nutritianist will be able to give you more help. There's a recipe in the SCD book for a disaccharide free infant formula which involves dry curd cottage cheese, safflower oil, and unpasteurized honey. I will send it to you if you like, although I'm sure you're worried about making major changes in her diet without medical support at this stage.

Best wishes, I'll be thinking of you, and hoping you've got all those willing people running around helping you.

Matilda

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TCA,

Some internet sites calim that goats milk is close enough to cows milk to cuase a reaction in those that cant tollerate dairy. I do ont know if its true or not, but figured you would want to know!

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Hmmm, I wonder if you can talk to your nutritionist and see if she can come up with a recipe for a home-made formula, maybe with goat's milk, or even rice milk, though I don't know if it has the necessary protein. Depending on the brand, it should have calcium, but you need to be on the lookout for any kind of barley malt or malt syrup.

I know you're crunched for time, but perhaps the best way to tell if she's allergic to goat's milk is to add a tiny bit to what she's getting now and see if she reacts (please check with your doctor or nutritionist first, though--I can't think of any reason why this wouldn't be a good idea, but I'm not experienced in this sort of thing).

Kefir is similar to yogurt in that it contains friendly bacteria, but it's more liquie, and drinkable. I think it can be mde from cow's, goat's, or sheep's milk.

I know it's humbling to ask for help, but you know you would give someone ini the same position whatever help you could. If your health and sanity depend on getting help then get help, because your daughter's life depends on your health and sanity!

Are the extra 2 sessions with the pump helping? When a baby increases their need for milk, they nurse about every hour for a day. Can you manage just one marathon day with the pump, and maybe that will do it? I'm sorry to suggest such an extreme thing when you're already so exhausted, it's just kind of a last-ditch idea if nothing else works.

I'm glad you got a few hours of rest. Keep hanging in there!

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if she's got an anaphylatic casein allergy, you'll be advised to stay away from goat's milk. all dairy (all mammalian milk) has the same components (various types of casein proteins and other proteins and fats), but in very different proportions. some people who are casein intolerant are actually only intolerant to one subtype of casein, and can handle a different species' milk that has very little of that subtype. if she has an anaphylactic allergy, however, _any_ quantity, however, will be a problem, so you'll have to avoid all dairy.

I wonder if some sort of put together mix of liquid vitamins, protein powder (like a rice based or hemp based one), coconut milk or flax oil (for fat), and so on would work. something really engineered from base ingredients. I'm sure it'd be expensive.... maybe it'll just be a corn issue, and they'll have an idea from past experience that'll work.

good luck! *keeping fingers crossed for you*

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That's a good idea for a homemade one. I guess that's kinda what I'm doing with the avocados and prunes. The nutritionist replied to my e-mail this morning and she's calling her gastroenterologist. Meg goes back to him next week and we'll form the next plan from there. She feels great today, though. I know I don't want to stop pumping, I just want to make sure I don't run out since she's literally using it as fast as I can pump it. I guess that's ok as long as I can keep up. I think I'm going to double the amount of avocado tonight from 2 oz. to 4 oz. and see how she handles that. That would help a little as far as volume goes.

I've been on the phone ALL morning with pharmacists. It turns out the Prevacid solutabs she's been on contain lactose. Who would put lactose into an acid prevention drug?????? I don't get it. this may be causing some of her issues. There is an oral suspension that we can give her, but it has to be mixed with about an ounce of water to get it down. She can eat so little and this replaces a feeding for her, but I guess we'll have to go with it. only one of her meds has corn syrup, but we can change that one easily.

It's all coming together a bit at a time. I feel better about things today. Sorry for having a panic attach on all of you yesterday! :(

I think the production is increasing some, but it usually takes a couple days of the extra pumping to get the supply to increase. I don't know that I can do every hour becuase her care alone requires so much time, but I'll do alll that I can. Thanks for the support. It really means the world right now! :)

Hmmm, I wonder if you can talk to your nutritionist and see if she can come up with a recipe for a home-made formula, maybe with goat's milk, or even rice milk, though I don't know if it has the necessary protein. Depending on the brand, it should have calcium, but you need to be on the lookout for any kind of barley malt or malt syrup.

I know you're crunched for time, but perhaps the best way to tell if she's allergic to goat's milk is to add a tiny bit to what she's getting now and see if she reacts (please check with your doctor or nutritionist first, though--I can't think of any reason why this wouldn't be a good idea, but I'm not experienced in this sort of thing).

Kefir is similar to yogurt in that it contains friendly bacteria, but it's more liquie, and drinkable. I think it can be mde from cow's, goat's, or sheep's milk.

I know it's humbling to ask for help, but you know you would give someone ini the same position whatever help you could. If your health and sanity depend on getting help then get help, because your daughter's life depends on your health and sanity!

Are the extra 2 sessions with the pump helping? When a baby increases their need for milk, they nurse about every hour for a day. Can you manage just one marathon day with the pump, and maybe that will do it? I'm sorry to suggest such an extreme thing when you're already so exhausted, it's just kind of a last-ditch idea if nothing else works.

I'm glad you got a few hours of rest. Keep hanging in there!

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((TCA)) big hugs for you! Will say a prayer for you and your little girl!!

I know the stress of feeding your child and then watching them be sick all night and walking the halls w/them. Hang in there and do accept any help that you can.

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I have a friend that used goats milk for her son and it worked for him. It wouldn't hurt to try. I used to be an RN in the NICU and it is true that whatever adjustments you make to her feedings need to be gradually. This is always how it is done. I am sorry you are having such a hard time. My son was sick for so long and my older son had two surgeries on his skull for craniosynostosis. It sounds like you are at your whits end, but God can take care of your little one. Try not to stress about your milk supply. So far it is working for her. There are human milk banks, but it may not work for her since she has so many allergies. We have used it in the NICU, but it is very expensive.

What is your daughters heart defect? HOw old is she? I will be keeping her in my prayers and you of course.

Monica

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Key - thanks for the advice. I have been doing just as the doctors and dieticians have told me on her feeds when it comes to the formula trials. She is 13 mos. old, but very tiny. she looks like about a 4 mo. old. She has pulmonary atresia with a large VSD. Everything was rerouted last April. She had a lot of complications and I now think celiac was triggered by the surgery causing most of them. they went back in to do a 2nd heart cath in prep for another surgery and the femoral artery in her right let collapsed. At that point, they just wanted to save her leg. They were withing hour of amputating when it finally started getting a tiny bit of blood flow. Her whole leg was just black. A bacterial infection then set in and she had 8 weeks of antibiotics. Surgery was postponed because they were afraid to mess with the leg. Thankfully, she now has a full range of motion. Her PAs are now shrinking becuase of the large pressure gradient to her lungs. This surgery was supposed to be just to close the VSD, but now they have to patch the PAs and replace the shunt because it is starting to clot. She suffers from SEVERE choking and gagging spells about a doz. times a day. She had a fundo due to severe reflux, but it only got worse and it came undone within 6 weeks. I then went on a gluten-free diet and dropped all supplementation and she finally started to gain weight and have some energy in Sept. She is doing soooooooo much better overall, but the choking is still violent and not one dr. has a clue as to why. She has developed a sliding hiatul hernia from the damage. I think the choking and retching might be food related, but no drs. really agree. Her allergy testing shows a slight allergy to milk and eggs (not severe) so I'm now eliminating them to see if it will help. Any ideas of what might be causing it? It's probably a combo of things. I'm just racking my brain. She also has an oversensitive gag reflex and had an Ng then and NJ tube for 4 mos that didn't help.

Sorry so long to explain. She's just complicated!

I was at my wit's end yesterday, but I decided it's going to get better. Not sure exactly how, but I'm determined! :) God is in control, so I'm letting him take over all this worrying and i'll just keep pumping because it's helping her soooooooo much. I'm jus so thankful that I can provide the breast milk that she can tolerate. I'll just have to accept that barely keeping up is still keeping up.

I do hope your kids are doing better. It sounds like you've really been put through it too. I'm not familiare with craniosynostosis, but surgery on alittle one is always scary. Take care and thanks again.

Tarnalberry - good idea on the mixture. I'll write all of this down and think about it and talk to the GI about it next week. For now it's avocados, as crazy as that might sound!

Thanks to everyone for your support. You really are a great group of people.

I have a friend that used goats milk for her son and it worked for him. It wouldn't hurt to try. I used to be an RN in the NICU and it is true that whatever adjustments you make to her feedings need to be gradually. This is always how it is done. I am sorry you are having such a hard time. My son was sick for so long and my older son had two surgeries on his skull for craniosynostosis. It sounds like you are at your whits end, but God can take care of your little one. Try not to stress about your milk supply. So far it is working for her. There are human milk banks, but it may not work for her since she has so many allergies. We have used it in the NICU, but it is very expensive.

What is your daughters heart defect? HOw old is she? I will be keeping her in my prayers and you of course.

Monica

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Tanya, don't apologize for panicking yesterday! Anybody would have panicked, and this is the best place to come to for support. And maybe you got some great ideas as a result, that might actually work.

My reaction to eggs is much the same as to gluten, so maybe cutting out eggs would be a good idea after all. If it makes no difference, you could just eat them again, and see if there is a reaction.

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