Infantreflux.org | 4 scary weeks

This topic has 13 replies, 1 voice, and was last updated 19 years, 2 months ago by Anonymous.

Viewing 14 posts - 1 through 14 (of 14 total)

Author

Posts
July 9, 2007 at 3:54 pm #38889

Anonymous
Inactive

I’m new to the message board and have been dealing with reflux for 4 weeks now.

My daughter Elizabeth is 4 weeks, 3 days old. On our first day home from the hospital she spit up, choked on it and turned blue. After flipping her over and banging on her back, she cleared the spit up and was able to breathe again. Since that incident we have been on pins and needles in fear that it may happen again. The past four weeks Elizabeth has been suffering from relux – silent relux. Elizabeth does not spit up/projectile vomit, but has what we call “episodes” where you can hear the food coming up, sometimes even feel her trunk spasming, and see her struggle to swallow it down and try to breathe. There are times that the formula will come out of her nose, or even just come out of her mouth hours after eating. We incline her in a bouncy seat and have her bed on an incline. She truly prefers to be upright, so we are using a carrier or constantly holding her upright on our chest/shoulder. We also have a 21 month old daughter who never had any feeding/relux issues, so all of this is pretty scary for us. We feel like we can never leave her side because at any moment she will start refluxing, gagging, and coughing. The only thing that seems to help is holding her upright.

Elizabeth is presently eating 3-4 ounces of Good start formula thickened with 2 tablespoons of rice cereal every 3-4 hours. She has been on Prevacid 1.33 ml twice daily for about a week. We already tried soy-based formula and things did not improve.

Does this situation sound like what you are experiencing. What else should we do for our baby? We have her 1 month pediatrician check up tomorrow. He mentioned doing an upper GI, but we don’t know how beneficial that test will be, or whether or not it requires sedation. Any information/suggestions are appreciated…..

July 9, 2007 at 4:22 pm #38892

Anonymous
Inactive

The upper GI requires no sedation and is painless for the lo. However many babies with reflux do’nt show it on the upper GI. It sounds like you are on a compounded prevacid which I know nothing about so maybe one of the other moms can chime in about that. Seems that are are many problems with getting it done correctly. You are on the right track. The prevacid should take about 2weeks to work and what may happen then is that she will start spitting up b/c it doesn’t hurt anymore… which is messy,but hey if they aren’t screaming or having the risk of choking I would take the spit up. Things do get better and you are definately on the right track. We didn’t start on Prevacid with Cooper until he was 10weeks old so we have a long time of not knowing what was wrong. I just thought he spit allot…. Boy have I learned allot. This site is a blessing and I am glad you have found us. Best of Luck. You may want to try the prevacid solutabs, they work great for us… you do have to give them 30-60 mintues before a feeding and on an empty stomach (for us usually 2hrs after his last feeding)… This way you don’t have to worry about it being made correctly. Also check out marci-kids.com to get information for the doc visit. Keep us posted.

July 9, 2007 at 4:30 pm #38896

Anonymous
Inactive

Hi there. Your situation sounds very similar to how things started with Hailey back then. Our daughters are also 20 months apart, and my oldest one did not have any issues with reflux that we were aware of. Hailey’s reflux was a bad case, and she also had the silent reflux episodes and choking spells where she’d turn blue. Once I even called 911 I was so worried. She’d have terrible episodes where the vomit would come out of her nose and she’s be choking to clear it all out.

We spent many months trying to get her meds under control, and part of the problem was that compounds are really difficult to make properly, and Hailey’s never was. Marci-kids (http://www.marci-kids.com) has lots of information about PPIs and dosing. They did research on compounds, and found that they’re often made incorrectly. If you check out the link about compounded PPIs stickied in the meds section it will tell you how a compound needs to be made to be correct. One thing they say is that each dose needs to be at least 3.5ml to ensure there’s enough buffer per dose or the meds won’t work as well as they should. There’ s also zegerid which is a stable suspension made with prilosec, or prevacid solutabs, but the problem with the solutabs is that you need to give them on an empty stomach and follow up with a meal 30 minutes later to activate the drug. How many mg/ml is her suspension?…. sounds like her dose is probably on the low side. Is she uncomfortable? What are her feedings like? Another thing to look into is MSPI (milk/soy protein intolerance). Some moms find that a hypoallergenic formula like alimentum or nutramigen helps. About the tests- an upper GI is not to diagnose reflux, but to look for structural abnormalities along the GI tract. They’re not sedated for it. They have them fast, and then feed them a barium solution from a bottle or syringe while they’re strapped down to an xray table. As they drink the solution they look at the screen to make sure that everything looks good. Sometimes they also invert the table to see if the barium will come back up i.e. to see how tight the LES is. Good luck. I hope you find the right combination to help your dd soon.

July 9, 2007 at 4:45 pm #38898

hellbennt
Keymaster

hi & welcome!

thickening may or may not help your baby…it’s fairly controversial- some swear by it & others report they found it didn’t make any difference & some say it causes gas/constipation, etc. I never thickened so I cannot speak from experience; I can only report what I have learned from this site over the past 4 years…I also am not so sure how many report thickening to help with silent reflux; from my understanding it’s used to help formula stay down, so it’s used w/ heavy spitters…

anyway, there is a lot to read and learn on this site & I’m glad you found us! Please find a moment to go to the Introduce Yourself Form and click on the top post called ‘Groupie Intro’

this is my welcome/intro and there is a lot of info there to help you- please bookmark it/make a note of it, as you will find that you refer back to it as questions arise

~laura

July 9, 2007 at 6:07 pm #38906

Anonymous
Inactive

Thanks for your suggestions.

Elizabeth’s prevacid suspension is 3mg/1ml. I don’t know if it’s low or not, Elizabeth is only about 9 pounds. In terms of comfort Elizabeth is usually uncomfortable unless we are holding her upright. I started wearing the “snuggly” this week – sometimes she is comfortable in it, but she prefers to be upright with her head on my shoulder. Her feedings go okay, she is a very noisy eater, sometimes gurgly during/after feedings, and she will gag/choke on formula during feeding (about once per feeding). She is hungry and wants to eat! We try to burp her every ounce and sometimes she burps well, other times not so well. I know everything is going to be trial and error. It’s just so painful for me to watch her discomfort.

What formula worked for Hailey? Did you thicken with cereal?

Thanks again for sharing your knowledge with me!

Anne

July 9, 2007 at 7:24 pm #38908

Anonymous
Inactive

Hi Anne–

my daughter had silent episodes as well–we eventually spent 5 days back at the hospital–we were told to thicken her feed to 1 1/2 tsp. per oz which is 1 tablespoon per 2 oz. with rice cereal–I never took my eyes off of her, so I completely understand your nerves–my mom and mother in law came everyday in shifts to help me have another pair of eyes when my dh was at work–

at 12pounds 5 oz. she was on 3 ml of prilosec compounded which is 2mg/ml 2x a day so basically 6mg 2X–it has increased as she has gained weight—-we also use a tucker wedge and sling for her to sleep in at night–even on the changing table we have her inclined—

I switched to lactose-free–I also burp her again after 1 1/2 hr. from her last feeding–that hidden burp always brought up stuff that she did the choking/no breathing thing on me—

Good Luck with Elizabeth!

Veronica

July 9, 2007 at 8:33 pm #38910

Anonymous
Inactive

HI and WELCOME! Everyone else covered all the basic stuff…just wanted to wish you the best. You’ve come to a great place full of lots of support and great resources. I didn’t think our nightmare with reflux would ever end, but with the proper dose of a PPI med (zegerid) things have been GREAT ever since. Hang in there!!! It sounds like you’re a wonderful mommy for taking the time to figure the whole reflux mess out. Good luck and keep us posted!

July 9, 2007 at 9:28 pm #38912

Anonymous
Inactive

Oh, I am so so sorry to hear about your situation. It seems like yesterday we felt alone and discouraged about how to help our hurting baby. The great news is this forum has been my lifeline the past two minths! You are at a great place for answers and support which is so important when you’re just starting what I lovingly call the reflux rollercoaster There’s hope! Things will get better especially once you find the right dose and the right meds. You’re such a great mommy for searching for answers wherever you can and I’ll be thinking of you hoping that things get better soon. It’s great that you are being so proactive so early! Kuddos to you mommy! We’re here for you!!

July 10, 2007 at 9:02 am #38932

Anonymous
Inactive

The gagging and choking during feedings was very bad for Hailey. We did try thickening b/c it was the only way we could control the choking. Hailey used to choke and then pull off, and arch a lot during feedings. It was hard to get her to eat and she ultimately developed a feeding aversion. I’m not telling you this to scare you- it sounds like your dd likes to eat, whereas Hailey never did, so kind of different situations, but only b/c I think it’s important to get the feedings under control early on. I started out BF with Hailey, and then when her feeding aversion got bad, I gave her EBM for two more months until 4 months old. I tried to thicken it, but didn’t know that you can’t thicken EBM b/c the enzymes break it down. Her choking was so bad, and she sounded so gurgly during and after feeds. Sometimes milk would come out of her nose.

You might want to ask your ped for a modified barium swallow/feeding study (which isn’t the same as an upper GI) to rule out any swallowing or feeding problems and to make sure she’s not aspirating.

About the meds, the dose is definitely on the conservative side, so if you think that she’s still uncomfortable, it might be worth asking for a more aggressive dose. As I said before, I personally don’t like compounds, but only b/c they never worked for us and they’re so hard to prepare correctly.

July 11, 2007 at 11:36 am #39004

Anonymous
Inactive

Yesterday we returned to the ped. for El’s 1month check up. He is sending us for an upper GI (I scheduled for Friday).

He was surprised to hear that there hasn’t been any change in her reflux since we began thickening her feeds and since starting the Prevacid. I inquired about changing formulas (currently Good Start). He gave us samples of Nutramigen. He suggested that we try the Nutramigen thickened with rice cereal to see if it helps. We have been using the new formula for about 24 hours now and we haven’t seen any change

I am now in the process of pursuing a Pediatric GI doctor to see if there is anything they can do to help us.

Any other suggestions? You all have been so wonderful and helpful. It’s nice to know that we aren’t battling this alone!

July 11, 2007 at 12:32 pm #39007

Anonymous
Inactive

Hi Anne –

Your situation sounds pretty similar to what we experienced with Owen. He had breathing issues so badly that he ended up inpatient for 3 days when he was 7 weeks old or so because his airway was blocked and they wanted to keep an eye on him. I’m not sure if it was choking/reflux related or if it was laryngomalacia (which basically means they have a floppy airway – he also had that) or a combination of the two. The good thing is that he’s totally outgrown it all and is a totally normal, happy (most of the time) 2 1/2 year old now!

We used the compounded Prevacid also and it did work really well for Owen, but I know that I’m one of the very few people who feel that way. He was also on a low dose compared to a lot of the kids here but it worked wonders for him – not sure why, but it worked so we didn’t mess with it. We tried Nutramigen but didn’t have good luck with it, but had GREAT luck with Alimentum – he was on it until he was just under a year and 1/2. When we tried the nutramigen he threw it all right back up and he wasn’t a huge barfer, but the alimentum was what made all the difference. It does take a few days though – I think maybe our Ped GI told us to wait 3 days to see if we saw a difference, but it’s my understanding that the proteins can build up in their systems so it might take a little longer than that. You might want to give the nutramigen another few days before you get too discouraged.

I hope that helps. I also hope it helps you to know that I was so scared for Owen when he was Elizabeth’s age but he has now outgrown everything. It’s amazing to look back and see where we once were and how far we’ve come!!

July 12, 2007 at 5:27 am #39045

Anonymous
Inactive

Hi Again Anne, it can take a little while for the formula change to have any effect. It was a good couple of weeks for Alana and probably a month before everything was sorted. As Laura suggest, you might have to give it a few days. There’s a lot of waiting in this reflux game!

July 12, 2007 at 8:18 am #39049

Anonymous
Inactive

Yes I agree with Therese. Don’t give up on the formula yet. It can take up to two weeks before you see any changes. Good luck!!!!!!!!

July 15, 2007 at 1:52 pm #39276

Anonymous
Inactive

Hi, I am so sorry your lo is going through this! I just wanted to chime in. I have a silent refluxer too who also would choke and stop breathing. he was on an apnea monitor during the early weeks. I am happy to say that once we got on the Prevacid solutabs and got the reflux and MSPI under control, he stopped having those horrible episodes. Now we are just on the reflux roller-coaster as most moms are on here.

I hope things get better for you too.

Jill
Author

Posts

Viewing 14 posts - 1 through 14 (of 14 total)

The forum ‘HELP!!!’ is closed to new topics and replies.