Jump to content
  • Sign Up
Celiac.com Sponsor:


Celiac.com Sponsor:

Archived

This topic is now archived and is closed to further replies.

TCA

Tried Neocate 1+ In Feeding Tube Last Night

Recommended Posts

My oldest (the one who had open-heart surgery) had what I suspect was a mild version of Meg's choking/gag reflex. I had to make all his foods very soupy so that he could swallow them without gagging. Things like cheerios, raisins, hot dogs, and peanut butter were impossible until he was at least 4 years old, and I cut grapes in slivers til then.

I didn't even realize that this was unusuall until my second child.

Anyway, you are doing a fantastic job for little Meg, and you needn't apologize for panicking--we were all panicking right along with you!

Hang in there! Do you have the Medela double pump?

Share this post


Link to post
Share on other sites

Thanks guys. I started eliminating eggs and milk last Monday (5/15). I finally got to talk to the allergist's office this afternoon. They said I should eliminate eggs and milk for 2 weeks, then add one at a time back to see what reactions she has. I need to add them one week apart. I already see an improvement in her eczema, except the day after the Neocate. So far, no change in the choking. I find it interesting that your son had a similar condition, Fiddle-Faddle. One intern had a theory that the Vagal (sp?) nerve was irritated due to the open heart surgery and the fundo and once the irritation cleared the spasms would stop and thus the choking would. I asked some drs. about this and all of them dismissed it. It might at least be a contributor seeing that your son had a similar issue.

For a while I was concerned that if she had these spells after her next surgery that it could rip sutures, especially inside the heart. I have been assured that there's no way that could happen, but the retching is just so violent. I know it would have to hurt soooo bad after surgery. Plus she will have so many tubes that will probably make it worse. I just shutter to think about it. Have any of you ever had a really bad case of the flu and just vomited until there's nothing left and then you're left retching and dry heaving? Her spells are kinda like that. She just collapses where she is and it goes on and on. She's seen 4 GI drs. and none have ever seen anything like it. They all have just said that she might outgrow it when she's around a year old. Well, here we are and there's no improvement.

She was also tested for corn allergies and all was negative. The allergist thinks I should just stick with eggs and milk right now, but I still wonder if I should go ahead and eliminate corn, or if this might confuse the other results. Corn has absolutely no logic behind it except that corn syrup solids are in 99% of the formulas she's tried and I thought there might be a connection. I have eliminated corn for a week before with no visible change at all, but wonder if this was long enough. Do any of you have an opinion here?

All the ckoking started around the time her projectile vomiting started. The vomiting stopped when i went gluten free and took her off the formulas. The retching improved a bit, but not much. Maybe this is because of the physical damage done by projectile vomiting for so long before I figured out the gluten thing. I'm just going in circles on it.

As for foods, you name it and we've tried it. We exhausted all our efforts, then Early Intervention sent a team out here to assess her. They were completely baffled. She will put toys and even an empty spoon in her mouth to play and chew on things, but you can put the tiniest amount of any type of food on the spoon and she starts gagging. Since she will put toys in her mouth, it is not a true oral aversion. One of them thought it was a physical response to food because of all her negative experiences, but she also does it when no food is around or even in her sleep. She was getting to where she would kinda chew on a Meringue cookie a little, but those are out now. We have been twice to a feeding clinic where people have been dealing with kids with feeding issues for over 20 years. There a team of a nurse, PT, OT, speech pathologist, social worker, and nutritionist do a group eval on her. We've been twice over the past 6 weeks and all of them are completely baffled. They've never seen anyone do what she does.

Sorry to get off on that..... I'm just soooo baffled and I'm usually able to figure things out. I have researched Eosiniphilic Espophogitis (sp?) and wonder if this might be a contributing factor. That's what led me to the allergy testing. If EE is diagnosed, the cure is to find the offending food via allergy testing and eliminate it completely. My thoughts were that if that is her problem, why not just do the allergy testing and eliminate foods and see if she improves. Putting her to sleep for the biopsy is not so simple with her cardiac issues. We'll just have to wait and see if Milk and eggs are it, I guess. Her GI at vandy is planning on doing a scope during her open heart surgery since she will be asleep then anyway, but I'd like to get it resolved before surgery.

As for the pump, I was using a very old Pump in style, but in Jan. I rented a Symphony. this is what they have at Vandy and it is now considered the Cadillac of pumps. It helped to increase my production a bit. I just had to have the hospital grade to get by. thankfully, Insurance is covering at 80%.

Share this post


Link to post
Share on other sites

T, does she gag on spoon-fed liquid? Maybe it's just a learned swallowing kind of thing, where she needs to go very, very gradually from total liquid by mouth to liquid with something mixed in (is she already doing that with breastmilk and a little avocado mixed in, or is that allthrough the tube?), to avocado with a little milkmixed in, to plain avocado?

I know it's a long shot, especially if nobody has ever seen it before, but that's how Michael was.

Glad you've got a good pump.

I'm thinking about you all the time...

Share this post


Link to post
Share on other sites

TCA,

I am so sorry that you are going throug this with your little one. I didn't mean to sound as if I have the answers, because I don't. I am just grasping at straws! It sounds extremely frustrating. It is awesome that she is doing good on your breastmilk though. You have really done great by pumping all this time for her. Have you ever had a pastor come pray over her for healing or answers? We had our pastor come pray for my son when we didn't know he had celiac and that evening was when I found it on the internet and knew that is what he had. HIs blood work had been negative and I knew nothing about celiac at the time. Miracles happen, so hang in there. Sometimes I believe that we get little answers to prayers just when we need them most.

The choking and retching sounds aweful. IT must be very scarey for you. I wonder if now that she is older you could try some natural healing things. YOu are using avocadoes for her which is great. There are other things that help digestion too. Maybe this would improve her ability to handle more foods.

My prayers are with you. I know how aweful it can be to worry yourself sick over a child, quite literally. My youngest that has celiac, also has a genetic disease called Neurofibromatosis 1. He is at risk for all sorts of things, cosmetic, tumors, etc. So far he has birthmarks from it and he is very short and small. He is 24 lbs and 32 inches at 26 months. He actually eats awesome now that we found out about celiac, but it hasn't really helped his height. He is healthy though now, so we are thankful for that and pray for his future.

Currently the kids are "healthy" and I am the one with digestive issues! All brought on probably from the stress of worry over my children for almost 7 years now.

Take care and we are praying for you,

MOnica

Share this post


Link to post
Share on other sites

She gags on ANYTHING that doesn't come through a bottle. She can suck the bottle and do fine, but it has to be a certain nipple or she gags on it. I mix rice ceral, bananana or avocados in with the milk for extra calories and she does fine with this. The thing is that she gags when food is nowhere around too. There's no ryme or reason to it. She also gags if her stomach gets empty. I guess I've been using gag, retch, and choke pretty interchangeably. It's just hard to describe. We're still trying different foods, though.

As for prayer - that is the ONLY thing that has gotten us through. Her GI here once said that I had an uncanny gut feeling when it comes to my kids and figuring out what is wrong with them. My reply was that I pray a lot. He laughed and said that would do it! My husband is youth pastor at our church and we even stayed with our pastor for a while when we had to have our house fumigated. Prayer is why she is even alive. She almost didn't make it through last summer. She has come sooooo far. We just still have a ways to go. Iknow god will bring us through, I just get impatient sometimes!!!!

Key - I hate you have had so much worry over your kids too, but I'm glad they're doing better. I hope you feel better soon too. Are you gluten-free? I have found it to help my health. I thought we had been through a lot with my oldest with all the testing for being so small. He was about the same size as your son at that age. It too turned out to be celiac, but now that he's on the diet he's doing great except for all the tooth enamel defects. He's going into the hospital next friday to get those fixed. His teeth are literally rotting from the inside out. It doesn't seem like quite a big deal compared to Meg's problems, though. i can see him learning so much compassion from all of this. He says all the time he wants to be a doctor. It really wouldn't surprise me....

Thanks to everyone for all the prayers. Where more than 2 are gathered together, God will hear, even if it is over the internet. :)

Share this post


Link to post
Share on other sites
She gags on ANYTHING that doesn't come through a bottle. She can suck the bottle and do fine, but it has to be a certain nipple or she gags on it.

Is it a slow nipple that works for her? Does she have a very narrow esophagus, or something that limits the amount she can swallow at a time? Or maybe the other nipples aim the milk at her gag reflex spot? I'm just trying to think of anything, ANYTHING that might be helpful or give you new ideas, sorry if this is all stuff you've already thought of.

Michael was 17 pounds at one year old. He was in the 75th percentile for height when he was 2--but he was only 22 pounds. Hope that gives you some hope!

Share this post


Link to post
Share on other sites

That is good she drinks from a bottle. I was under the impression that she was on tube feedings. It is so hard to know why kids have issues with feedings and eating sometimes. I have seen other kids have problems. I have a friend in town here and her 11 year old lives on ENsure. He hardly eats anything else. HE has all these food aversions, etc. He is very skinny, but smart and doing great otherwise. I did tell her he should see a GI doctor, because he never has. THere is no one to help him they say, because he is too young to be treated as an anorexic and no one will take him, but he has had issues with foods and gagging on certain foods from the time they started feeding him. Pediasure was what helped him gain some weight, but he hasn't out grown all the issues with food.

I am glad that you have some support there for your family. Hang in there. I always think to myself that the stress can't go on forever.

Take care,

Monica

Share this post


Link to post
Share on other sites

She's had 4 barium swallow tests and all have shown her anatomy to be normal, with the exception of the sliding hiatul hernia. Both my fahter and my mother in law have very sensitive gag reflexes, so part of this may be inherited. The nipple she will take is the cheap hospital ones. It's strange, but I guess she learned to take a bottle on those and just won't have the others. I've bought about 50.00 worth of other types to try and finally gave up. We used a Haberman feeder for a while, but it has a very long nipple and seemed to make her gag worse. I really do appreciate the ideas, though.

Meg was 13 lbs at 1 year, but she's up to 14.5 lbs now! She was born at 7-4, so she started off a good size. She's gaining really good on my concoction of avocado and prunes with breast milk in her tube at night. She only takes about 4-6 oz. a day by mouth, but I'm determined for her to take some by mouth every day. She gets 60 ml per hour at night with the mixture. This is the first thing to make her gain at a pretty good rate, so I'm glad about that.

Her eczema seems to be doing better, at least, on the milk and egg free diet. Maybe the gagging will get better soon! She was better today with it so far now that she's got all the formula out of her system. She seems to just feel great today and that helps me. She's only gagged 3 times so far today and that's really good. i think the prayers are helping as much as anything!

We sit her down at the table with us at each meal and give her something to eat. She usually just throws it in the floor, but we're trying to give her positive conotations with food. I hope we will make progress with this, but our primary concern at hand is to stop the gagging and get weight on her before August.

I hope the little boy you mentioned will be able to get some help soon.....

Share this post


Link to post
Share on other sites

Yeah, the haberman feeders have a long nipple. It is good you are getting her to eat some from a bottle. When did you start the feedings at night? I have heard of kids not being very interested in eating meals during the day when they are fed at night, but this is probably not the case with her. It is a catch 22! That is awesome she has gained some weight. My son was 7lbs 6oz at birth and then just was slow to grow after the first week. ONce he hit 9lbs it was slow from there, but he never had normal bowel movements and in my mind I felt they were runny even for breastfed babies. It wasn't like my other two kids. He was always cranky from day one until 14 months old when we found out he had celiac. He has been a different baby and child. Thriving for sure. He is still small for his age. His height is very low, but we think it is do to genetics and NF1.

Have you looked into supplemental colostrum?? I met this lady that had a son with a severe egg allergy and she gave him colostrum and it cured him of it. So she said anyway. I hear it is supposed to be good. You would have to research it though, because I am not up on it. Just an idea. SHe may out grow the feeding problems. My son never ate until we got rid of wheat. He would gag when we put food near his mouth, but once he was gluten free this stopped. He didn't have much vomiting with it. Just minor spitting up even at 14 months still. He was a good breastfeeder though. That was all he wanted to do. The GI doc had me wean him at 13 months and put him on formula and that was when he got even sicker. I was so mad I quit nursing. I was very desperate for him to gain weight though, so wanted to do anything. It didn't help at all of course.

Have a good rest of the day!

MOnica

Share this post


Link to post
Share on other sites

Okay, here are a few thoughts that came to me as I read all of these posts.

#1-Breastmilk is exactly what she needs right now. She has proven that. Have you thought about doner milk from a milk bank?

#2- YOu are doing great with the pumping. What a hard schedule you are on with that! You go girl! Do you have a support group you can lean on like La Leche League?

#3- Do you have a vitamix? This will save your life. We LOVE ours. You can liquify ANYTHING and still keep the whole food. CHeck it out.

#4- Have you tried freederm for her excema? My son has it. He is allergic to eggs and is celiac. For his breakouts the ONLY thing that really works is freederm. www.freederm.com

#5- Cashews, lax seed oil and cocnut milk are great for adding fat to the diet.

#6- Soy milk. Silk Soy makes one that is enriched for kids. I know soy is controversial, but it really cant be any worse then what they put in some of those formula's. My kids drink soy and are thriving. You can get a really cheap case at costco.

Hope this help and I am praying and thinking about you!

HUGS

Taffy

Share this post


Link to post
Share on other sites
Yeah, the haberman feeders have a long nipple. It is good you are getting her to eat some from a bottle. When did you start the feedings at night? I have heard of kids not being very interested in eating meals during the day when they are fed at night, but this is probably not the case with her. It is a catch 22! That is awesome she has gained some weight. My son was 7lbs 6oz at birth and then just was slow to grow after the first week. ONce he hit 9lbs it was slow from there, but he never had normal bowel movements and in my mind I felt they were runny even for breastfed babies. It wasn't like my other two kids. He was always cranky from day one until 14 months old when we found out he had celiac. He has been a different baby and child. Thriving for sure. He is still small for his age. His height is very low, but we think it is do to genetics and NF1.

Have you looked into supplemental colostrum?? I met this lady that had a son with a severe egg allergy and she gave him colostrum and it cured him of it. So she said anyway. I hear it is supposed to be good. You would have to research it though, because I am not up on it. Just an idea. SHe may out grow the feeding problems. My son never ate until we got rid of wheat. He would gag when we put food near his mouth, but once he was gluten free this stopped. He didn't have much vomiting with it. Just minor spitting up even at 14 months still. He was a good breastfeeder though. That was all he wanted to do. The GI doc had me wean him at 13 months and put him on formula and that was when he got even sicker. I was so mad I quit nursing. I was very desperate for him to gain weight though, so wanted to do anything. It didn't help at all of course.

Have a good rest of the day!

MOnica

I've never heard of the supplemental colostrum. Where can I get this. What is it, really? My guess would be that the boy outgrew the allergy, but if the colostrum helped him gain weight, I'll try anything!!!!!

My son was also a poor eater before going gluten-free. Now he eats like a little pig. I nursed him until he was 20 mos, but at the time it was because of a dairy allergy, or so we thought. I wonder now if it wasn't celiac disease that went undiagnosed. He had D 4-6 times a day and was soooo small. he's still little, but he's a healthy little, if that makes sense. I'm only 5-2 and my husband is 5-8, so he probably won't get too tall. I'm so glad your son is thriving. I'm not familiar with the NF1, but I remember a long time ago looking at a post you had made that had a link describing it and I looked it up then. I hope it doesn't affect him too adversely. God builds character in all of us in so many different ways. It's just hard to see our kids go through it.

Msg has been on night feedings pretty much all her life. Since a few days after surgery. She will take a little more during the day if we cut down on her feeds at night, but doesn't come anywhere near her goals. If it weren't for the next surgery I would try to cut down on the night feeds more, but we just have to pack on as many calories as we can for now. That has to be the top priority. I feel that as long as she is taking some by mouth every day that we can make progress with that as we go. Would you agree?

you're lucky to have the nursing insight with your kids. I'm an engineer, but I've even considered going back to school after everything calms down for nursing. I worked with biomedical experiments on Space Station and loved it. I actually worked as a nurse's aid in a retirement home in high school and I now feel like I've got lots of experience with Meg!

I hope you have a great evening too. Thanks for the info.

Tanya

Share this post


Link to post
Share on other sites
Okay, here are a few thoughts that came to me as I read all of these posts.

#1-Breastmilk is exactly what she needs right now. She has proven that. Have you thought about doner milk from a milk bank?

#2- YOu are doing great with the pumping. What a hard schedule you are on with that! You go girl! Do you have a support group you can lean on like La Leche League?

#3- Do you have a vitamix? This will save your life. We LOVE ours. You can liquify ANYTHING and still keep the whole food. CHeck it out.

#4- Have you tried freederm for her excema? My son has it. He is allergic to eggs and is celiac. For his breakouts the ONLY thing that really works is freederm. www.freederm.com

#5- Cashews, lax seed oil and cocnut milk are great for adding fat to the diet.

#6- Soy milk. Silk Soy makes one that is enriched for kids. I know soy is controversial, but it really cant be any worse then what they put in some of those formula's. My kids drink soy and are thriving. You can get a really cheap case at costco.

Hope this help and I am praying and thinking about you!

HUGS

Taffy

I wanted to add:

have you tried any alternative medicines? Like NAET.com? My friend tried this for her very,veryvery allergic son and it worked. Are you working with a lactation consultant with the pumping issues? This could prove to be invaluable.

Also check out LLLI.org forum on breastfeeding very ill children.

Share this post


Link to post
Share on other sites
Okay, here are a few thoughts that came to me as I read all of these posts.

#1-Breastmilk is exactly what she needs right now. She has proven that. Have you thought about doner milk from a milk bank?

#2- YOu are doing great with the pumping. What a hard schedule you are on with that! You go girl! Do you have a support group you can lean on like La Leche League?

#3- Do you have a vitamix? This will save your life. We LOVE ours. You can liquify ANYTHING and still keep the whole food. CHeck it out.

#4- Have you tried freederm for her excema? My son has it. He is allergic to eggs and is celiac. For his breakouts the ONLY thing that really works is freederm. www.freederm.com

#5- Cashews, lax seed oil and cocnut milk are great for adding fat to the diet.

#6- Soy milk. Silk Soy makes one that is enriched for kids. I know soy is controversial, but it really cant be any worse then what they put in some of those formula's. My kids drink soy and are thriving. You can get a really cheap case at costco.

Hope this help and I am praying and thinking about you!

HUGS

Taffy

1 - I'm not opposed to donor milk if it comes to that, I just doubt we're going to be able to find donor milk that is gluten, egg, and dairy free.

2 - thanks for the encouragement. I just went and checked out the site you mentioned and I joined. I hadn't seen that particular part of the site and was excited. One mom on there has 2 kids with heart defects, so at least some help might be there!

3 - No, I've been using a food processor. I'll have to find one.

4 - No we haven't, but her eczema is really getting better. We'r just using eucerin and hydrocortizone, .5%. If it doesn't clear up, I'll check on that. A friend of mine is having a hard time with her baby's eczema, though, so I'll let her know.

5 - We've added a variety of oils to her diet and she hasn't tolerated them well. I think I'm going to go back to MCT oil for a trial after we get through the egg and milk trial.

6- I drink soy milk and I love Silk the best. I checked and the calories are lower than breast milk, but again I think I may just try her on the Very Vanilla one once we get through this trial.

Thanks so much for the info...... I joined the forum this morning, but can't post yet. Are you on there? I"m TCA over there too. Also - I haven't tried alternative meds. I'm afraid to even take a tylenol unless I just have to with her heart condition. My dad was once using some alternative type meds and he had some major setbacks, so I'm hesitant. Thanks sooooo much for the info, though.

Share this post


Link to post
Share on other sites

IF you haven't tried soy formula, I have an option. My son used a formula from 1-2 years old. It is called Baby's Only Organic Soy formula. It is very high in fat. It has 9 grams of fat for 8 ounces. My son thrived on it and I felt so good about giving it to him once I quit breastfeeding. It has coconut oil in it, sunflower oil and soy protien and it is gluten free. I called them. It also has vitamins and minerals. It has 160 calories/8ounces.

I looked up colostrum and it looks good for you, but I would have to research it more as an option for my kids. It is supposed to increase the immune system. I am going to look into it more even for myself, because I think it would be good to heal the digestive system maybe.

It sounds like you are doing the best thing for her trying to fatten her up before surgery. You have plenty of time to work on getting her eating better by mouth. It is very good that she knows how to drink from a bottle and does take some everyday.

My kids have come with stress, but I wouldn't trade them for the world! Actually right now they are all doing great. My little one was sick with celiac for a long time and then he had some major ear infections that he needed tubes for. They helped so much. He has been fine since and I swear he can eat more then me. How old is your son and what does he weigh? I am 5'2 also and my husband is 5'9 inches, so I know our kids aren't going to break any records. My son is a healthy little too. He has fat on him and looks good, but a bit short. I am just SO happy he eats so well and begs for food all the time now.

Do you have alot of friends and support?? I hope so. Friends don't really understand all we go through I think. THey try, but for me when my kids are sick, it consumes my thoughts. It is hard for me to enjoy much else when I am worried about one of my children. It seems I am always making some decision reguarding their health.

Are you able to get out and walk at all ever?? Hang in there and feel free to email me anytime you are stressed or want to talk. It is nice to just have someone to listen sometimes.

Take care,

Monica

Share this post


Link to post
Share on other sites

Thanks for the info. We tried soy formula a long time ago and she got very sick. It might be worth trying again. I looked it up on the web and I will bring it up again next week at her dr. appt. I also did some research on the Colostrum. The only problem I see with it is that it is Bovine. I looked further and it does contain whey and casein. She has a milk allergy, so this might add insult to injury. I looked for other options, and found sheep and equine, but both were for baby animals and not humans.

i am so glad your kids are happy and healthy now. It means everything, doesn't it?

I am very blessed with wonderful friends and family who call and write often, but like you said, they don't really get it. I don't hold that against them, but you don't know what it is to have a chronically ill child until you have one. I do appreciate their love, support, and prayers so much, though.

We live in the country and I tend to spend a lot of time working outside. It does me so much good. I get on the computer when I pump, usually, so that's why I'm here so much. I played kickball and baseball with my son and cleaned the front porch and walked some today. We're very outdoor type people.

you may be hearing from me on that e-mail offer. It's just good to talk to folks who understand how hard it is. thanks so much for listening.

IF you haven't tried soy formula, I have an option. My son used a formula from 1-2 years old. It is called Baby's Only Organic Soy formula. It is very high in fat. It has 9 grams of fat for 8 ounces. My son thrived on it and I felt so good about giving it to him once I quit breastfeeding. It has coconut oil in it, sunflower oil and soy protien and it is gluten free. I called them. It also has vitamins and minerals. It has 160 calories/8ounces.

I looked up colostrum and it looks good for you, but I would have to research it more as an option for my kids. It is supposed to increase the immune system. I am going to look into it more even for myself, because I think it would be good to heal the digestive system maybe.

It sounds like you are doing the best thing for her trying to fatten her up before surgery. You have plenty of time to work on getting her eating better by mouth. It is very good that she knows how to drink from a bottle and does take some everyday.

My kids have come with stress, but I wouldn't trade them for the world! Actually right now they are all doing great. My little one was sick with celiac for a long time and then he had some major ear infections that he needed tubes for. They helped so much. He has been fine since and I swear he can eat more then me. How old is your son and what does he weigh? I am 5'2 also and my husband is 5'9 inches, so I know our kids aren't going to break any records. My son is a healthy little too. He has fat on him and looks good, but a bit short. I am just SO happy he eats so well and begs for food all the time now.

Do you have alot of friends and support?? I hope so. Friends don't really understand all we go through I think. THey try, but for me when my kids are sick, it consumes my thoughts. It is hard for me to enjoy much else when I am worried about one of my children. It seems I am always making some decision reguarding their health.

Are you able to get out and walk at all ever?? Hang in there and feel free to email me anytime you are stressed or want to talk. It is nice to just have someone to listen sometimes.

Take care,

Monica

Share this post


Link to post
Share on other sites

TCA, I know you said you tried the Alimentum formula before, but would you consider giving it another chance? It may have casein, indeed, but this is what their website says:

A hypoallergenic formula, Similac® Alimentum® Advance® Protein Hydrolysate Formula with Iron is designed for infants with food allergies or colic due to protein sensitivity. Its protein has been broken down into smaller parts, making it easier for baby to digest and less likely to cause an allergic reaction. If her milk allergy isn't an anaphylactic one, then it merits trying.

My son was highly allergic to casein at birth too. So much so that he couldn't tolerate my breast milk. After trying 8 different formulas, Alimentum did the trick. It took a few days on it before we saw a change though. It was truly an answer sent from God for us. I was at my wits end. He thrived beautifully on it until age two.

As for the gag reflex, my niece had what appeared to be the same thing your daughter has. She would vomit everything and I'm talking projectile vomiting. She had that until age 3 but somehow she outgrew it. The doctors didn't know what it was with her either. Now she is an overweight teenager!

I've also said a special prayer for your little girl and your family tonight and strongly believe that God will guide you to the answer you seek.

Mart

Share this post


Link to post
Share on other sites

Thanks so much for the prayers. They are carrying us! We only tried the alimentum about a month or so ago. Our son wasn't able to tolerate any formulas either, but he was able to nurse, so keeping my supply up wasn't such a big deal. I still have a can of the alimentum. I think what I'll do is keep it on hand in case my supply drops again. It seems to be picking back up again. If I need something, I'll turn to it first and try starting in small amounts. I know that it is supposed to be hydrolyzed protein, but for some reason it bothered her and that's the only thing I could tie it back to. She had a really bad morning, but a good afternoon, so I am still hopeful that the elimination of eggs and milk may be helping. I guess only time will tell. I hate your neice had to go through this, but it is good to know that others are on the other side of this and doing well. thanks for your encouragement. It really helps! Have a blessed weekend.

TCA, I know you said you tried the Alimentum formula before, but would you consider giving it another chance? It may have casein, indeed, but this is what their website says:

A hypoallergenic formula, Similac® Alimentum® Advance® Protein Hydrolysate Formula with Iron is designed for infants with food allergies or colic due to protein sensitivity. Its protein has been broken down into smaller parts, making it easier for baby to digest and less likely to cause an allergic reaction. If her milk allergy isn't an anaphylactic one, then it merits trying.

My son was highly allergic to casein at birth too. So much so that he couldn't tolerate my breast milk. After trying 8 different formulas, Alimentum did the trick. It took a few days on it before we saw a change though. It was truly an answer sent from God for us. I was at my wits end. He thrived beautifully on it until age two.

As for the gag reflex, my niece had what appeared to be the same thing your daughter has. She would vomit everything and I'm talking projectile vomiting. She had that until age 3 but somehow she outgrew it. The doctors didn't know what it was with her either. Now she is an overweight teenager!

I've also said a special prayer for your little girl and your family tonight and strongly believe that God will guide you to the answer you seek.

Mart

Share this post


Link to post
Share on other sites
Guest tracey and emma

Hi

i have just read your first post, and being honist only some of the others as i am so tired. sorry.

I have simular problems with feeds and it is not so uncommen to have this with feeding tubes. one week emma is ok and the next she is retching and gaging like no tomorrow for know reason at all.

we usually go to electrolites for 1-2 nights here in germany it is called oral-perdon in england dioratlite, not sure about were you are.

then after a break we start so slowerly and build it up everynight till we get to were she should be but that is not always the case quite offtern end up going backwards. just another idaer because i know this can be normal and know a lot of other parents the same!!!!

just though i would mention it. probably no help but.....you never know.

i am hoping i have put this in the right palce this time LOL sorry everyone. :wacko:

Share this post


Link to post
Share on other sites

Thanks so much for checking in. She's gotten better as the week went on and the formula got out of her system. Wed. was the last day she had blood in her spit up. I'm supposed to try egg and milk free until next wed to see if it will help her, but I may go a little longer. I actually got about 7 hrs. sleep last night, so I'm doing better too. I'm still staying ahead in production, but just barely. I don't have any in the freezer, but I think it is starting to pick up a bit. I think the stress of last week when everything just got to me was making it worse. I so appreciate all the prayers and well wishes. I also called a friend who cleans houses and asked her to come help. She had offered a lot already, but I hated to bother her. It's getting better! It always does..... :)

Share this post


Link to post
Share on other sites

TCA, try Fenugreek - it is an herb known to increase milk production. I took it when I was pumping. But you have to take capsules (rather than teas)- at least 3500 mg per day (7 capsules). I found them in Fruitful Yield stores. google fenugreek if you want to find out more.

Share this post


Link to post
Share on other sites

×
×
  • Create New...