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Just wondering if anybodies preemies have gerd or reflux issues or any of that. My daughter us 6 monthsm 3 months adj. age and we're dealing with some major feeding/breathing issues related to reflux.
G.I. or Reflux issues.
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Thanks. I wanted to point you to the sibling thread about not letting siblings in without vaxing. I know you went through this..
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My son's not a preemie, but at 17 mths, we've dealt with the most severe reflux you can imagine! He is a distressed baby!
We've avoided major surgeries with him luckily.
We had him on an apnea monitor until he was a year old for sleep apnea due to reflux.
There's a great site that helps me keep my sanity...
www.infantreflux.org
Let me know if you need anything!
you can even pm me if need be.
We've avoided major surgeries with him luckily.
We had him on an apnea monitor until he was a year old for sleep apnea due to reflux.
There's a great site that helps me keep my sanity...
www.infantreflux.org
Let me know if you need anything!
you can even pm me if need be.
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Thanks I've seen that site and I am a member of the forums at www.infantrefluxdisease.com. I can definitely imagine devere reflux. LOL. My daughter is 6 months 3 months adujsted age. She just got out of the hospital for the 3rd time. This time from apnea/brady caused by reflux. We've have changed formula, meds, the works, she's had 3 ph probes, an upper g.i. etc. She lost a pound in one week last week so she has another weight check. We're discussing an ng tube and surgery. Just wondering what everyone elses experiences are.
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Quote:
Hi! That's me.
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Glad I'm well known for something.
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I'm not an expert on the breathing issues but I can tell you from experience reflux is HARD! But it does get better. It just makes each day seem like it lasts a century. I'm so sorry you and your precious dd are suffering.
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First a few questions:
What is she eating (breastmik or formula-- what kind of formula)? Is she eating well or is she a difficult feeder? Is her growth good? Is she being seen by a Ped GI? Is she being treated for the GERD with meds? Is she generally happy other than the vomting/spit-up/breathing issues, or is she crying and miserable and arching her back? For the breathing, is she on an apnea monitor, and do you have a reflux wedge/sling for her? Has she ever had pneumonia or lung problems from the aspiration/breathing problems? Has she turned blue from it?
There is a great group that has saved my sanity. These mamas know their stuff. Most of the kids are medically complex and almost all of them suffer from various degrees of reflux. Try to visit ASAP. You will be welcomed and taken care of, I promise. www.parent-2-parent.com/forums
Originally Posted by Cyneburh Elaina, There's a mom here who has dealt with super severe reflux/gerd issues with her dd. I don't remember her name, I just remember her siggie proudly announcing the arrival of toddler poop. Maybe another mama here remembers her name? She's a frequent poster so I should remember her user name! She'd be an excellent resource for you though! eta... found her! USAmma... here's a link from her siggie |
I'm not an expert on the breathing issues but I can tell you from experience reflux is HARD! But it does get better. It just makes each day seem like it lasts a century. I'm so sorry you and your precious dd are suffering.
First a few questions:
What is she eating (breastmik or formula-- what kind of formula)? Is she eating well or is she a difficult feeder? Is her growth good? Is she being seen by a Ped GI? Is she being treated for the GERD with meds? Is she generally happy other than the vomting/spit-up/breathing issues, or is she crying and miserable and arching her back? For the breathing, is she on an apnea monitor, and do you have a reflux wedge/sling for her? Has she ever had pneumonia or lung problems from the aspiration/breathing problems? Has she turned blue from it?
There is a great group that has saved my sanity. These mamas know their stuff. Most of the kids are medically complex and almost all of them suffer from various degrees of reflux. Try to visit ASAP. You will be welcomed and taken care of, I promise. www.parent-2-parent.com/forums
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That site looks as if it may even be helpful to me. I've got some tough issues with my son that I can't seem to work out for him
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Does that site have a search engine to look for past information in past posts?
It's great to meet other gerd parents
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Does that site have a search engine to look for past information in past posts?
It's great to meet other gerd parents
Hi my DD was a preemie at 33 weeks. She is now 17 mo. and continues to have reflux, however it has lightened since she was a baby. After having her home for a few weeks she would have reflux and literally turn 'blue' on me 2-3 times. It was so scary not knowing what to do. Thank G-d she came out of it.
I would recommend having a suction machine in your house. Ask your ped or ped GI to help you obtain it from the Home health care companies.
My DD is on a gtube for growth. Part of me believes that causes the reflux along with her formula. I'm' currently researching blenderized diets.
Hope this helps. It seems to me that time was the best cure, but going through it is not easy.
Rachel
I would recommend having a suction machine in your house. Ask your ped or ped GI to help you obtain it from the Home health care companies.
My DD is on a gtube for growth. Part of me believes that causes the reflux along with her formula. I'm' currently researching blenderized diets.
Hope this helps. It seems to me that time was the best cure, but going through it is not easy.
Rachel
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USAmma said:First a few questions:
What is she eating (breastmik or formula-- what kind of formula)? Is she eating well or is she a difficult feeder? Is her growth good? Is she being seen by a Ped GI? Is she being treated for the GERD with meds? Is she generally happy other than the vomting/spit-up/breathing issues, or is she crying and miserable and arching her back? For the breathing, is she on an apnea monitor, and do you have a reflux wedge/sling for her? Has she ever had pneumonia or lung problems from the aspiration/breathing problems? Has she turned blue from it?
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Thanks for responding! Emma used to eat well and it seems like as her reflux has worsened her eating behaviors are changing and she is hard to eat. My husband and I literally rock, paper, scissors to see who HAS to feed her. She sticks out her tongue, arches her back, whips, her head back and forth and screams. Not EVERY feeding but most of them. She does better while half asleep, but then sometimes the bottle just sits in her mouth., She is on enfamil a.r. and neosure right now (half and half to help reduce vomiting and get more calories into her).
She has a referral in for the G.I. and just had an upper g.i. done which didn't show anything out of the ordinary. She's had 3 ph probes which show moderate-severe reflux. She was on zantac at her maximum dose up until yesterday at which point her doctor said enough is enough and put her on prilosec at the maximum dosage. (she lost a pound in a week from not eating) Her o.t. says at this point it's not oral aversion issues but she's protecting herself from the pain of reflux. I agree. She cries ALOT, she is my most miserable baby, poor thing. She's also waking up tons of times in the nights and she still spit up at least 3 times a day and vomits at least once a week. She has another weight check on tuesday.
For the breathing she is not on an apnea monitor. (we do have an angelcare monitor) We also have an a.r. pillow (like the tucker sling) She has not been laid flat in WEEKS. She has turned blue from the reflux and was hospitalized for a week for it. At which point they ruled out aspiration pneumonia. It seems like everything SHOULD be fine, yet she's losing weight and quite miserable, and let me be honest here, we're pretty miserable too. I'll head over to that message board. Let me know if you thiink of anything from what I've written.
Sorry for the novel:![]()
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I just read your daughter's story. I could have written your journal. I was teary eyed and choked up and reading it to my husband. He said you wrote that or someone else? LOL. but seriously. I took a feeding chart for 4 days.
Here it is: Warning it's somewhat long...
Emma's Feeding 8/10/0624 Hours 7a.m.-7a.m.
Time StartTime EndOunces TakenSymptoms
7:00 a.m.7:23 a.m.2arching back, sticking tongue out
9:00 a.m.9:14 a.m.2.5whipping head back and forth, gagging, arching back
12:30 p.m.12:43p.m.1whipping head, arching back, crying
4:05 p.m.4:43 p.m.4Crying, whipping head, gagging, settled into feeding.
6:03 p.m.6:13 p.m.3Sticking out tongue, whipping head, arching back.
8:30 p.m.8:45 p.m.2Whipping head, stricking tongue out, gagging
5:27 a.m.5:40 a.m.2Sticking tongue out, refusing to eat.
15.5 ounces total in 24 hours.
Emma's Feeding 8/11/0624 Hours 7 a.m. -7 a.m.
8:48 a.m.8:55 a.m.3Ate really well. Burped. Fought the bottle. Feeding ended. Dpit up a lot after feeding.
12:30p.m.12:50 p.m.4Stuck out tongue, choked, settled into it.
3:02 p.m.3:15 p.m.4arched back, stuck tongue out, spit up a lot after feeding.
5:47 p.m.6:25 p.m.3Arched back, whipped neck (neck cracked), screaming, fighting bottle. Gave up after 3 ounces.
8:30 p.m.8:52 p.m.3Gagged. Stuck out tongue.
17 ounces total in 24 hours.
Emma's Feeding 8/12/0624 Hours 7 a.m- 7 p.m.
7:00 a.m.7:30 a.m.2Turned head, gagged. Wouldn't take more after burping.
9:00 a.m.9:05 a.m.0Refused to eat.
11:25 a.m.11:40 p.m.3Ate okay. Spit up most with her burp. Wouldn't eat again.
3:03 p.,m.3:48 p.m.4Ate 2 oz. Spit up a lot. Burped, turned head, gagged, managed to get down 2 more ounces.
7:05 p.m.7:53 p.m.1Whipping head, screaming, arching back.
8:35 p.m.8:41 p.m.0.5Crying.
11:45 p.m.12:30 p.m.3Half asleep. Took feeding fine. Spit up quite a bit during burp.
13.5 ounces total in 24 hours
Emma's Feeding 8/13/06 24 Hours 7 a.m.- 7 p.m.
7:05 a.m.7:40 a.m.2Arched back. Cried.
9:43 a.m.10:14 a.m.3Arched back, whipped head, cried. Spit up.
2:45 p.m.3:00 p.m.1Not sucking. Sleepy.
5:26 p.m. 5:33 p.m.3Ate well. Spit up quite a bit hour later.
7:35 p.m.7:45 p.m.2Ate well. Burped. Spit up tiny bit. Cried and turned head when offered more.
11:33 p.m.12:05 a.m.2Ate well. Started stricking tongue out mid feeding. Refused more. Vomited.
6:00 a.m.6:25 a.m.4Gagged, stuck out tongue, settled into feeding. Spit up quite a bit.
17 ounces total in 24 hours.
This was the few days before finding out she had lost a lb. She is 6 months, 3 months adjusted and weighs 10 lbs even.
Here it is: Warning it's somewhat long...
Emma's Feeding 8/10/0624 Hours 7a.m.-7a.m.
Time StartTime EndOunces TakenSymptoms
7:00 a.m.7:23 a.m.2arching back, sticking tongue out
9:00 a.m.9:14 a.m.2.5whipping head back and forth, gagging, arching back
12:30 p.m.12:43p.m.1whipping head, arching back, crying
4:05 p.m.4:43 p.m.4Crying, whipping head, gagging, settled into feeding.
6:03 p.m.6:13 p.m.3Sticking out tongue, whipping head, arching back.
8:30 p.m.8:45 p.m.2Whipping head, stricking tongue out, gagging
5:27 a.m.5:40 a.m.2Sticking tongue out, refusing to eat.
15.5 ounces total in 24 hours.
Emma's Feeding 8/11/0624 Hours 7 a.m. -7 a.m.
8:48 a.m.8:55 a.m.3Ate really well. Burped. Fought the bottle. Feeding ended. Dpit up a lot after feeding.
12:30p.m.12:50 p.m.4Stuck out tongue, choked, settled into it.
3:02 p.m.3:15 p.m.4arched back, stuck tongue out, spit up a lot after feeding.
5:47 p.m.6:25 p.m.3Arched back, whipped neck (neck cracked), screaming, fighting bottle. Gave up after 3 ounces.
8:30 p.m.8:52 p.m.3Gagged. Stuck out tongue.
17 ounces total in 24 hours.
Emma's Feeding 8/12/0624 Hours 7 a.m- 7 p.m.
7:00 a.m.7:30 a.m.2Turned head, gagged. Wouldn't take more after burping.
9:00 a.m.9:05 a.m.0Refused to eat.
11:25 a.m.11:40 p.m.3Ate okay. Spit up most with her burp. Wouldn't eat again.
3:03 p.,m.3:48 p.m.4Ate 2 oz. Spit up a lot. Burped, turned head, gagged, managed to get down 2 more ounces.
7:05 p.m.7:53 p.m.1Whipping head, screaming, arching back.
8:35 p.m.8:41 p.m.0.5Crying.
11:45 p.m.12:30 p.m.3Half asleep. Took feeding fine. Spit up quite a bit during burp.
13.5 ounces total in 24 hours
Emma's Feeding 8/13/06 24 Hours 7 a.m.- 7 p.m.
7:05 a.m.7:40 a.m.2Arched back. Cried.
9:43 a.m.10:14 a.m.3Arched back, whipped head, cried. Spit up.
2:45 p.m.3:00 p.m.1Not sucking. Sleepy.
5:26 p.m. 5:33 p.m.3Ate well. Spit up quite a bit hour later.
7:35 p.m.7:45 p.m.2Ate well. Burped. Spit up tiny bit. Cried and turned head when offered more.
11:33 p.m.12:05 a.m.2Ate well. Started stricking tongue out mid feeding. Refused more. Vomited.
6:00 a.m.6:25 a.m.4Gagged, stuck out tongue, settled into feeding. Spit up quite a bit.
17 ounces total in 24 hours.
This was the few days before finding out she had lost a lb. She is 6 months, 3 months adjusted and weighs 10 lbs even.
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I hate to barge in here, but it really sounds like you need help.
The vomitting, to me has always been a sign of allergy OR intolerance. There's a big difference. and an intolerance is almost impossible to get diagnosed. That's what we deal with my son-lots of intolerances.
Have you tried alimentum with her yet?
It would take a while to see results if it would work. Like at least a week.
Alimentum in the liquid ready to feed formula is made with different ingreidients, so that's another option.
If you've been that route, I'd say ask about Neocate formula. It could help you avoid a tube if you found a formula that worked. It would be worth it. A neocate trial takes about a month to notice a difference. It really works slowly to heal the digestive system. I know a doctor that does neocate strictly for some severe kids to avoid tubes and it works wonders. He has some kids on it alone till they're like 8 years old.
Neocate is corn based, so if corn may be the issue for her, then the neocate may not work. It's very rare that it wouldn't work though.
I'm trying to keep this short so I'm probably skipping vital info, but I'm just trying to throw some things out there for you to check into.
The meds... Have you seen this site for med dosing? www.marci-kids.com
It's really amazing how much the dosing is recommended for some kids. This may be helpful for your ped to look at. Her pain sounds like it should be controled by meds, but isn't.
This is a strong statement, but it's what I believe happens with my son...
The reflux is caused be the intolerances to foods and gets worse when he ingests those foods.
In other words, reflux isn't so much the issue as a side effect.
It took me a year to realize this with my son, unfortunately
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I kept trying to deal with his reflux-which isn't wrong- but he really needed a different diet.
His allergy testing to things always came back negative, so I never persued just trying different things with him. When I started trying different formulas and foods with him, he was a new and happy baby that started to gain weight. He doesn't still gain much, but at least we're not negative anymore.
I know what you're going through. I've been going through it for 17 mths. It's not easy and my heart goes out to you AND your husband. I really do hope you can find the help you all need.
The vomitting, to me has always been a sign of allergy OR intolerance. There's a big difference. and an intolerance is almost impossible to get diagnosed. That's what we deal with my son-lots of intolerances.
Have you tried alimentum with her yet?
It would take a while to see results if it would work. Like at least a week.
Alimentum in the liquid ready to feed formula is made with different ingreidients, so that's another option.
If you've been that route, I'd say ask about Neocate formula. It could help you avoid a tube if you found a formula that worked. It would be worth it. A neocate trial takes about a month to notice a difference. It really works slowly to heal the digestive system. I know a doctor that does neocate strictly for some severe kids to avoid tubes and it works wonders. He has some kids on it alone till they're like 8 years old.
Neocate is corn based, so if corn may be the issue for her, then the neocate may not work. It's very rare that it wouldn't work though.
I'm trying to keep this short so I'm probably skipping vital info, but I'm just trying to throw some things out there for you to check into.
The meds... Have you seen this site for med dosing? www.marci-kids.com
It's really amazing how much the dosing is recommended for some kids. This may be helpful for your ped to look at. Her pain sounds like it should be controled by meds, but isn't.
This is a strong statement, but it's what I believe happens with my son...
The reflux is caused be the intolerances to foods and gets worse when he ingests those foods.
In other words, reflux isn't so much the issue as a side effect.
It took me a year to realize this with my son, unfortunately
His allergy testing to things always came back negative, so I never persued just trying different things with him. When I started trying different formulas and foods with him, he was a new and happy baby that started to gain weight. He doesn't still gain much, but at least we're not negative anymore.
I know what you're going through. I've been going through it for 17 mths. It's not easy and my heart goes out to you AND your husband. I really do hope you can find the help you all need.
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We have tried alimentum or neocate yet, however I will ask her doctor about it on tuesday. Thanks!
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Hi! Did you have a chance to look at those questions I posted earlier? I would like to help you but I need to have more info.
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It sounds like she really has some issues and is kinda teetering on the edge of Failure to Thrive.
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It's so hard to deal with this kind of thing. The positive thing is she's getting enough to stay hydrated and not starve. The bad news is that she's not taking enough to grow on right now. Hopefully things will turn around for her very soon and she'll start eating.
I do agree that you need some help beyond your ped. I'm sure your ped is a nice person and can help with general baby questions. However feeding issues like you are dealing with need the attention of a feeding therapist and possibly a Ped. GI. Your feeding journal sounds so, so familiar. My dd could have been your dd's twin that way.
The thing is, up until 3 mos old babies will suck by reflex even if they are not hungry. You can feed them this way. After 3 mos old that reflex goes away and they make a choice to eat or not. Most babies choose to eat, but some are in a lot of pain or have oral aversions so they will choose not to eat. That's why it's so important to be proactive and try to get her into a specialist soon. You might even be able to find a lactaction consultant who can work with her even if she's bottlefed. Feeding issues are universal and maybe an LC can help you to get her to eat better.
Unfortunately I didn't seek help soon enough with her because the ped kept blowing me off. I ended up taking her to ER one night at 3 mos old and was discharged 6 days later with a feeding tube, which she is still using today at 30 mos old at least part time.
Okay so hopefully your dd won't need a tube. But if she does, it's not the end of the world. Right now nutrition is extremely important and can affect them in a good or bad way for the rest of their lives. It was such a relief to see my FTT baby gaining and getting chubby and starting to pass her milestones again. That was the blessing of the tube. She's a tall, healthy, bright girl today and you would never know she has a feeding tube under her shirt.
BTW: Neocate is broken down so much that the ingredients are not recognized as allergens. Yes it contains corn and some other things but it won't bother a baby who's allergic to corn. I know a toddler with severe corn allergies who is on Neocate (tube-fed) and doing better than ever before. Alimentum is your next best choice, the ready to feed kind. It has different ingredients than the powdered kind and is easier to digest.
Also, talk to your insurance about a prescription coverage for the formula. If she ends up on Neocate you might be able to get it covered. It's very, very expensive otherwise. So is the Alimentum RTF, about $250/month. If she ends up on a feeding tube (hopefully not) most insurance will cover the formula.
It sounds like she really has some issues and is kinda teetering on the edge of Failure to Thrive.
I do agree that you need some help beyond your ped. I'm sure your ped is a nice person and can help with general baby questions. However feeding issues like you are dealing with need the attention of a feeding therapist and possibly a Ped. GI. Your feeding journal sounds so, so familiar. My dd could have been your dd's twin that way.
The thing is, up until 3 mos old babies will suck by reflex even if they are not hungry. You can feed them this way. After 3 mos old that reflex goes away and they make a choice to eat or not. Most babies choose to eat, but some are in a lot of pain or have oral aversions so they will choose not to eat. That's why it's so important to be proactive and try to get her into a specialist soon. You might even be able to find a lactaction consultant who can work with her even if she's bottlefed. Feeding issues are universal and maybe an LC can help you to get her to eat better.
Unfortunately I didn't seek help soon enough with her because the ped kept blowing me off. I ended up taking her to ER one night at 3 mos old and was discharged 6 days later with a feeding tube, which she is still using today at 30 mos old at least part time.
Okay so hopefully your dd won't need a tube. But if she does, it's not the end of the world. Right now nutrition is extremely important and can affect them in a good or bad way for the rest of their lives. It was such a relief to see my FTT baby gaining and getting chubby and starting to pass her milestones again. That was the blessing of the tube. She's a tall, healthy, bright girl today and you would never know she has a feeding tube under her shirt.
BTW: Neocate is broken down so much that the ingredients are not recognized as allergens. Yes it contains corn and some other things but it won't bother a baby who's allergic to corn. I know a toddler with severe corn allergies who is on Neocate (tube-fed) and doing better than ever before. Alimentum is your next best choice, the ready to feed kind. It has different ingredients than the powdered kind and is easier to digest.
Also, talk to your insurance about a prescription coverage for the formula. If she ends up on Neocate you might be able to get it covered. It's very, very expensive otherwise. So is the Alimentum RTF, about $250/month. If she ends up on a feeding tube (hopefully not) most insurance will cover the formula.
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Thanks USAmma I posted responses to you in post 9 and 10. Her doctor called me today and said she was thinking about Emma and wanted to check on her before the weekend. man I love this ped.
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Anhyways, she got the upper g.i. test results. Basically no reflux was shown everything looked normal she had a slight delay at the duadnum but nothing "remarkable" So my doctor is really pushign toget into the g.i. specialist soon. We might have to drive out of orange county for it, since the two ped g.i. specalists are gone (one on vacation and one on emergency maternity leave or somesuch). Anyways, She wants to do a lower bowel study on her and thinks there is more going on than just the reflux but doesn't know what. She also mentioned neocate and said we'll discuss it on tuesday at her weight check. I'll keep everyone posted!
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: How did I miss your reply?!
That's great that you are trying to find out what might be going on beyond the reflux. We are switching Ped GI's for that very reason because our current one only cares that she's gaining, not that she's still having problems.
The empty scans *can* be helpful but not always. Most people will tell you that they are not very helpful because it depends on the day, her mood, bm's, whatever. My dd's showed no reflux so I started to videotape her vomiting episodes to show the GI that she really did have a serious problem. Sounds like things are moving forward and that's always a good thing. You sound like you are a great advocate for her, too!
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Hope the Prilosec starts to work soon. My dd really was helped by the Prilosec but it took a week to show full effects. Are you getting it compounded? If so, just pay attention to the shelf life on the bottle.
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It's fairly short, around 14 days.
Originally Posted by munkeesmama Thanks USAmma I posted responses to you in post 9 and 10. Her doctor called me today and said she was thinking about Emma and wanted to check on her before the weekend. man I love this ped.
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That's great that you are trying to find out what might be going on beyond the reflux. We are switching Ped GI's for that very reason because our current one only cares that she's gaining, not that she's still having problems.
The empty scans *can* be helpful but not always. Most people will tell you that they are not very helpful because it depends on the day, her mood, bm's, whatever. My dd's showed no reflux so I started to videotape her vomiting episodes to show the GI that she really did have a serious problem. Sounds like things are moving forward and that's always a good thing. You sound like you are a great advocate for her, too!
Hope the Prilosec starts to work soon. My dd really was helped by the Prilosec but it took a week to show full effects. Are you getting it compounded? If so, just pay attention to the shelf life on the bottle.
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I believe it is compounded. It's a liquid. It states it's good until 9/14/06 so basically a month. I've heard most are only good for about 14 days so I'll ask her ped. I have nothing but good things to say about my ped. She is being proactive and she realizes thsat emma's care is beyond her realm riht now, that she doesn't lnow ALL the g.i. issues. She said today that she'll be calling people and pulling strings to get this figured out. YAY.
I saw a video of you singing to your daughter and trying to feed her. That's exactly what we go through. Today was a better day. But I really don't have high hopes for tomorrow. We'll see. Maybe the prilosec will kick in. Also with the eating issue my daughter sometimes will eat an ounce fine and then start up. it is SO annoying and just outright tiring. Let's just say i have not said the nicest things while feeding her lately. i feel horribly guilty and know i should feel blessed she is even with us, but I'm sure you understand!
I saw a video of you singing to your daughter and trying to feed her. That's exactly what we go through. Today was a better day. But I really don't have high hopes for tomorrow. We'll see. Maybe the prilosec will kick in. Also with the eating issue my daughter sometimes will eat an ounce fine and then start up. it is SO annoying and just outright tiring. Let's just say i have not said the nicest things while feeding her lately. i feel horribly guilty and know i should feel blessed she is even with us, but I'm sure you understand!
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Quote:
Totally understand.
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Once I threw her bottle across the room out of frustration and it broke open and made a mess-- but it sure felt good at the time.
Originally Posted by munkeesmama Let's just say i have not said the nicest things while feeding her lately. i feel horribly guilty and know i should feel blessed she is even with us, but I'm sure you understand! |
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LMAO, so glad I'm not the only one and feel so blesed to have "met" you. thanks for everything.
Originally Posted by USAmma Totally understand.
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I was looking for other reflux posts, I read yours and it sounds so familiar. My DD was a 27 weeker, now is 4 months, 1 month adjusted. When we were discharged from the NICU we were told that she has mild reflux- apparently their criteria was whether the baby vomits their whole feeds. We suspected it was worse than mild because the morning of our "first" discharge date she had a brady (very uncharacteristic for her, the first one in weeks) when spitting up. They kept her for another 5 days, added Zantac, no more episodes so they sent us home. After 3 days of sleeping in shifts to make sure one of us was awake to make sure she was breathing, she had 2 blue episodes in one day when spitting up. We spent another 10 days at the Children's Hospital here to get the real deal.
After a Swallow study and an Upper GI, we were told yes, it's severe reflux. She's maxed out on Zantac and now also on Reglan. The reglan made a HUGE difference, she used to bear down SO hard to have a bm and to pass gas, making the reflux worse. The ped GI doc was very helpful, and our best advocate was the Speech Language Pathologist. She recommended thickening her formula with rice cereal, and did warn that it could constipate- which it did. So we add 1 tsp of prune juice per 3 oz bottle- and voila! daily loose bms, instead of formed bms that no infant should have to try to pass. She also worked with us to find a low flow nipple that wouldn't constantly clog from the cereal, and with feeding positions and pacing her suck/swallow/breathe pattern. The Swallow study showed that she wasn't aspirating, but was very dangerously close to it. The GI doc went so far as to recommend going back to tube feeding to avoid the reflux alltogether, but in our minds it wasn't really an option because she's a good eater. The combination of all of these along with keeping her upright after feeds has made a tremendous difference. She does spit up once in a while, but with no stomach acid it doesn't cause her to stop breathing like before.
Thickening the formula made a big difference, she's eating Enfamil Enfacare 22 cal with rice cereal. We tried oatmeal cereal instead- less constipating but too thick to get through the low flow nipple. Tried Simply Thick, a non-nutrative thickener, she choked on it the first try so we didn't try it again, also not constipating. We were told that prune juice on its own could aggravate the reflux, but mixed with the formula concoction would be ok. It has worked for us so far!
It took a team of drs to get us comfortable enough to be able to sleep without panic. She's gained 2 lbs in the past month, up to 10 lbs, and she's happy most of the time. I gave the same advice to another mom with a preemie with bad reflux that I met in the NICU of asking for a consult with a Speech Pathologist. It really felt like they were the most knowledgable when it comes to working out bottle feeding issues and made a HUGE difference, all of the thickening and feeding advice came from them. Our feeds now are almost seamless, no more choking on formula. The hardest part now is the stress of coordinating her medicine and feeding schedules.
I know how hard it is, I saw your post and I've told myself the same thing- just be happy that she's here, it could be so much worse. I hope that you finally get the help from your docs, so that you can start enjoying her more too. I hope some of this is helpful to you, because I know how unfair it feels when you're going through it and how tiring it is.
Originally Posted by munkeesmama Thanks USAmma I posted responses to you in post 9 and 10. Her doctor called me today and said she was thinking about Emma and wanted to check on her before the weekend. man I love this ped.
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After a Swallow study and an Upper GI, we were told yes, it's severe reflux. She's maxed out on Zantac and now also on Reglan. The reglan made a HUGE difference, she used to bear down SO hard to have a bm and to pass gas, making the reflux worse. The ped GI doc was very helpful, and our best advocate was the Speech Language Pathologist. She recommended thickening her formula with rice cereal, and did warn that it could constipate- which it did. So we add 1 tsp of prune juice per 3 oz bottle- and voila! daily loose bms, instead of formed bms that no infant should have to try to pass. She also worked with us to find a low flow nipple that wouldn't constantly clog from the cereal, and with feeding positions and pacing her suck/swallow/breathe pattern. The Swallow study showed that she wasn't aspirating, but was very dangerously close to it. The GI doc went so far as to recommend going back to tube feeding to avoid the reflux alltogether, but in our minds it wasn't really an option because she's a good eater. The combination of all of these along with keeping her upright after feeds has made a tremendous difference. She does spit up once in a while, but with no stomach acid it doesn't cause her to stop breathing like before.
Thickening the formula made a big difference, she's eating Enfamil Enfacare 22 cal with rice cereal. We tried oatmeal cereal instead- less constipating but too thick to get through the low flow nipple. Tried Simply Thick, a non-nutrative thickener, she choked on it the first try so we didn't try it again, also not constipating. We were told that prune juice on its own could aggravate the reflux, but mixed with the formula concoction would be ok. It has worked for us so far!
It took a team of drs to get us comfortable enough to be able to sleep without panic. She's gained 2 lbs in the past month, up to 10 lbs, and she's happy most of the time. I gave the same advice to another mom with a preemie with bad reflux that I met in the NICU of asking for a consult with a Speech Pathologist. It really felt like they were the most knowledgable when it comes to working out bottle feeding issues and made a HUGE difference, all of the thickening and feeding advice came from them. Our feeds now are almost seamless, no more choking on formula. The hardest part now is the stress of coordinating her medicine and feeding schedules.
I know how hard it is, I saw your post and I've told myself the same thing- just be happy that she's here, it could be so much worse. I hope that you finally get the help from your docs, so that you can start enjoying her more too. I hope some of this is helpful to you, because I know how unfair it feels when you're going through it and how tiring it is.
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Thanks for the reply. Our daughter also had lots of apnea and at the end brady's. she was deemed the "brady queen" The last 2 weeks we were there was simply because of brady issues. She is on half thickened formula which has helped the spitting up but not the reflux issues. I'm thinking getting the right dosage of meds is what we'll make the difference. I'll keep everyone posted!
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Hi Munkeesmama,
While my child was not born a preemie, he did suffer from a lot of lung problems and illnesses from birth on. An Internal Medicine physician tested him for many diseases from cancer to T-cell deficiencies because he just wasn't getting any better. Finally, he suggested he might have severe GERD. I questioned his diagnosis as my child never spit up nor did he ever act like his stomach hurt. He insisted the GI tract can cause many pulmonary problems. We went to a Gastroenterologist at the age of 3 months where a pH probe was performed and determined he had Class C GERD. He explained that Class C GERD is severe GERD and while medications would keep him comfortable for a while, only surgery would do the job. After a few months on Prilosec, Reglan, and Zantac, there was a 0% change in my son's condition and the physician recommended surgery. I was scared to death as I had previously gone through open heart surgery with my daughter and didn't want to face another major surgery. After much prayer, my husband and I decided to let the little guy live pain free and to go on with the surgery. They performed what is called a Nissen Fundoplication "Nissen Wrap" and I have to say it is the best decision we have ever made. While he is still thin and eats like a bird "a little at a time" he has reached his 6th birthday and is thriving.
P.S. Reglan can be a very dangerous drug if not used as prescribed. After 6 months of treatment with Reglan, a child should be seen by an eye specialist every year (I can't remember for how long though).
I hope this helps.
While my child was not born a preemie, he did suffer from a lot of lung problems and illnesses from birth on. An Internal Medicine physician tested him for many diseases from cancer to T-cell deficiencies because he just wasn't getting any better. Finally, he suggested he might have severe GERD. I questioned his diagnosis as my child never spit up nor did he ever act like his stomach hurt. He insisted the GI tract can cause many pulmonary problems. We went to a Gastroenterologist at the age of 3 months where a pH probe was performed and determined he had Class C GERD. He explained that Class C GERD is severe GERD and while medications would keep him comfortable for a while, only surgery would do the job. After a few months on Prilosec, Reglan, and Zantac, there was a 0% change in my son's condition and the physician recommended surgery. I was scared to death as I had previously gone through open heart surgery with my daughter and didn't want to face another major surgery. After much prayer, my husband and I decided to let the little guy live pain free and to go on with the surgery. They performed what is called a Nissen Fundoplication "Nissen Wrap" and I have to say it is the best decision we have ever made. While he is still thin and eats like a bird "a little at a time" he has reached his 6th birthday and is thriving.
P.S. Reglan can be a very dangerous drug if not used as prescribed. After 6 months of treatment with Reglan, a child should be seen by an eye specialist every year (I can't remember for how long though).
I hope this helps.
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