Really need some encouragement re. Reflux and son getting worse

I am hoping that some of you who have had a baby with reflux can help me to feel better about this. My son has always had issues with spit up, to the point that even hours after a feeding he will still spit up. His ped. was not concerned as long as he was gaining weight, but at his last check-up this past week (9 month visit), he was only in the 5th percentile for weight and I told his Ped. that I was very concerned with his eating issues - that they seemed to be getting much worse, to the point that he can hardly keep his bottle down (he is on Enfamil Gentlease) and also his solids.

She put him on Zantac (1ml 2X day) and Prevacid solutabs (7.5mg 2X day) and it is not making one bit of a difference yet (been on it for one week). He also saw a Ped. GI who ordered a barium swallow test (we have this tomorrow) and a gastric emptying test (still waiting to get an appt. that is sooner than a month away!).

The Ped GI made me feel horrible, he said he was surprised that I didn't seek help for this sooner, and of course I followed what my Ped. suggested and was on top of it as much as I could be, but still, you know as a mom you feel so guilty as it is, let alone when a doctor makes you feel like #)&$!!

I am really feeling bad. I don't know how to help my son. The GI doc thinks it is something most likely beyond just reflux because as Dylan ages, he should be getting better not worse. He did not suggest changing his formula (yet) or anything else. I guess he just wants to see what these tests show.

I am hoping that some of you who have traveled this path can give me some ideas to help my son keep his food down - we already feed him upright and keep him upright for at least 30 min. I cannot give him smaller more frequent bottles because he simply gets hysterical if his bottle is not 8 oz. I just don't know what to do and need some support, please.

 

Have you tried feeding cereal or a solid food right after his bottle, or before? With my Jack feeding either RIGHT before or after a bottle helped with the spit up.

Keep us updated on his appt's. :hug99:

 

:hug99: It's just not fair when your poor baby is unhappy. All my babies had reflux and food allergies. I have to admit that the reflux improved alot after I stopped all the allergens (plus the meds). My kids all had milk, soy, wheat, and egg allergies. I hope they give you answers at that next appt, although they'll probably tell you what you already know- that he's refluxing.

Sounds like you have two jerky doctors, the ped who didn't take you very seriously and the other who made you feel crummy. Don't feel bad- as mom's we put up with a lot of cranky moments and we don't really know when it's just the crabbies or something worse. And as far as his growth, if he's growing, then it seems OK. Doctors really shouldn't make you feel like that when you are already feeling bad about it. So sorry you're dealing with this.

 

Our guys had bad reflux. Our ped switched them to Enfamil AR. It is a much thicker formula. Would you consider trying that? It worked wonders for us!!

 

I am so sorry to hear about your son's reflux AND how the peditrician has been to you! Don't feel badly - by taking him to the doctors for all the tests and posting on this forum shows that you are concerned and are doing all you can!

My James has reflux and is on Enfamil Gentlease. While I don't think it's quite as bad as what you are experiencing, it's a worry nonetheless. Two things have helped us that our pedi. recommended:
1. Try to have them sit upright after eating for at least an hour. Now, this doesn't always work - 2 hours can go by and like your little guys, mine will surprise us and spit up. I found the Bumpo seat/chair thing to help.
2. Rice cereal in the bottle. This is kind of a controversial thing to do, but our pedi recommended it and it helped us.

Just a few thoughts. I know it's hard, but try not to beat yourself up over it. You're a great mom!

 

Dont feel bad, you tried to get help but your ped was wrong and didnt steer you in the right direction. Ds has horrible reflux, he would spit up entire bottles, nothing helped. He finally went on prilosec and that is what did the trick. Eventually I was able to take him off the meds, but he started to act up again and stopped eating...he is still a very small 3 year old. We just took him to the GI again and they did an endoscopy, waiting on the biopsys from that still. But he was put back on meds, now he is on prevacid.

As for my girls, they were very refluxy, never went to a GI though. I played with formula for awhile. FInally we settled on similac lactose free, it worked wonders for them. When they were around 10 months we had to switch to Enfamil lacotse free and it was horrible, for some reason the similac was all they could handle.

Just hang in there, reflux sucks

 

My son was diagnosed with reflux early on. The GI specialist first put him on hypoallergenic formula and Zantac. After 2 weeks of no improvement (so that basically ruled out that the spit up was caused by an allergy) he was put on Prevacid (first solution, at 4 months the tabs). It has made a major difference, however, it does take up to 2 weeks before coming effective, so you can't say that it doesn't work yet. It really can take 2 weeks. Next to that, please give the Prevacid at least 30 minutes before a feeding. In our case I gave it right before his morning nap, so he could have a bottle when he woke up, and I give it 30 minutes before dinner. This way the medication is way more effective. I know a lot of docs won't tell you this, but a good GI specialist does (and should).

Another good site is www.infantrefluxdisease.com.

Hope you all feel better soon!

 

Sorry that you are feeling so bad. Both of my boys had reflux from very early on. One has a milk allergy so he was put on the Alimentum, but the other was put in the Enfamil AR that has the rice cereal added to it and he did great on that. They were both on the Zantac liquid and that did not help but they were switched to the Prevacid Solutabs and they seemed to work. The one on Alimentum we were putting a teaspoon per ounce of formula in and it was a bit better but not totally. So we saw the Ped GI and he said to increase the rice cereal to 2 teaspoons per ounce of formula and that did the trick and it helps with weight gain too. Hope this helps. Hang in there.

Rachel

 

:hug99: :hug99: :hug99: I am so so sorry that your doctors made you feel that way. About 7 months ago, I was in the same exact situation. My ds was put on zantac and then prevacid by our pediatrician. I went back to them countless times telling them that it wasn't working and it was getting worse by the day. They told me that he wouldn't starve himself, and gave me the number to a Ped GI who couldn't see us until 4 WEEKS later. Let me tell you, my son did try to starve himself. I know you feel guilty and don't let them make you feel that way. PLEASE don't. I tortured myself by blaming myself. You trusted your doctor, as did I and unfortunately they were wrong. So it's not your fault and at least now you are seeking the right path. The GI doc tried to tell me my ds may have a neurological disorder...his high palate?? may have something to do with his refusing to eat... anything under the sun except that it wasn't reflux. WRONG. After all the tests, it was in fact reflux and my son was put on prilosec. In a matter of days my son was a new baby. He started drinking his bottle and taking some solids. It took us a bit to get him to trust that the formula/food wasn't the cause of his pain, but now he is 100% better...we are still working on solids though!
Is your son crawling? Pulling up?
What you could try and do in the mean time is give him a teaspoon of Mylanta before his bottle... this was hit or miss with my ds, but worth a try.
Again, :hug99: Don't blame yourself! And keep us updated!
:love0028:

sorry i rambled! :FIFblush:

 

our pedi wouldn't do much for us. my twins have been spitting up from day one but they wouldn't do anything about it because they were still gaining weight. well about a month ago we went in because it has been getting worse. I demanded some help because they were just miserable, especially grant. something has to be wrong if your baby throws up as he is pulling up. Gavin was done spitting up at about 4 months.

she gave us some meds which haven't really helped. I called them back so frusturated about 2 weeks ago and BEGGED for more suggestions. she told me to add one teaspoon of rice cereal for every ounce of formula you give them. so for a 6 ounce bottle, we put in 6 ounces of formula. we bought cheap bottles and cut open the nipple more to allow the thicker formula to come out. THIS WORKED MIRACLES!!! Grant now only spits up about 2 times a day on average and Garrett maybe once or none. when they were spitting up 3 and 4 times after each bottle. This might helpl for you.

 

I know how you feel. My ped. tried telling me the same thing. Oh nothing is wrong until they projectiled across the exam room. Then he looked at me and said,"and how often do they do this?" I was so irritated. Like I don't know my own kids. He then got us in to an upper GI and Boy the spec said that they had severe cases of acid reflux. So they put them on prevacid solutabs 15mg twice a day. At the time they were only 3 months old. Then I still had them on the high calorie enfacare for preemies because I didn't want them to lose weight. When we went in for our 4 month check the pedi looked at me and said there is nothing else we can do. switch them to enfamil ar and go from there. Until they start losing weight then we can do surgery but not until then. Who would want their child to go through surgery any way. I went through it with my 2nd daughter on her eyes and that was bad enough. However they still spit up and it is not all at once anymore but more throughout the day. They can have a bottle spit up a little and then 3hrs later spit up 2-3 oz and then 1/2 hr later spit up another 2oz. Then it is time to feed them again and go through it all over again. They know that if they get 3 oz they throw a tizzy if they can't eat more but I try to wait 10-15 min. before I let them finish the next 3 oz. All I have to say is hang in there you know what you are doing and you are on top of it. We will help you as much as we can just stick to your guns and hang on. :hug99:

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I don't have any experience with this, but I just wanted to offer a :hug99: . It is so miserable to feel helpless and unable to make things better when your child is suffering. You are doing a wonderful job seeking help for him- don't let the doc cause you to doubt yourself. Best of luck with your very difficult situation.

 

I know what you are going through is aweful!! And I fully understand your being concerned that he is spitting up just about as much as he is taking in. It sounds like all the right things (concerning getting tests and all) are FINALLY happening. It's really frustrating when you KNOW something is wrong with your baby and all the "experts" around keep telling you it's nothing.

I just want to mention (because I didn't see you mention it in your post so forgive me if you have already tried this) putting cereain IN the bottle. My girls BOTH had reflux. One much worse than the other and like your baby, my one dd was literally spitting up about 10-12 times a day. It made NO difference how much or little I fed her, how often I burped her in between and how long I kept her sitting up afterwards. She still spit up non-stop!! It was very overwhelming and I didn't even leave my house for a few months because I just found myself constantly cleaning her up and changing her clothes and I just couldn't take it. Finally, after being on Zantac for a while, I called the ped because I was just sick of the spit up. It was consuming my entire day!! The ped recommended putting 1 tsp for every 2 oz of milk in the bottle (we had to use a special cereal flow nipple). This seems to work wonders for Lorien and really weighted the milk down. She went from about 12 spit ups a day to about 1/2 that instantly. Then I had another appointment with another ped there (to follow up) and she said, I could put 1 tsp per 1 oz of milk and that cut her down to like 1-2 spit ups a day and soon it worked it's self down to 1 and then eventually none. She was on the prosobee (soy) formula while my other dd was on Enfamil A.R. which worked awesome for her.

A lot of people get confused about the purpose of the medication given for reflux. The meds do NOT stop the spit up. They stop the painful acid burning associated with reflux. Hope your sweetie feels better soon and that you are able to find a solution to the spitting up that works. Hang in there, I swear it does go away eventually!!!

 

QUOTE(reeba1976 @ Aug 1 2007, 08:38 PM) [snapback]353272[/snapback]
Our guys had bad reflux. Our ped switched them to Enfamil AR. It is a much thicker formula. Would you consider trying that? It worked wonders for us!!



Enfamil AR has worked wonders for my DD as well. It is a little thick and difficult for them to get through the nipple; however, if you mix a batch up the day before and let it sit a little in the fridge it seems to help. Also, play around with the consistnecy, JUST A LITTLE BIT being careful not to alter it too much. We found that using just a touch more water made it easier. Of course, if you use too much additional water it will alter the caloric content of the bottle. We tried switching to the faster nipples but she was able to drink it too fast and that really really aggravated her reflux. Making the formula too runny with too much additional water also allowed her to drink it too fast and also aggravated the reflux. My DD is only 2months though so your guys should probably do better with managing the flow.

I hope that helps. I can imagine how frustrated you must be that this is getting worse, not better. Try not to be too hard on yourself as all you can go by is what the PED says and that is the position we are put it. We HAVE to trust our peds and if they fail us it is NOT your fault. I didn't really say that right but I hope you KWIM.

Amy

 

Lisa, I am so sorry! My heart is breaking for you because I have been there! The right combonation of meds is what finally helped us. Ask about Reglan. It is for short-term use. My babies were better within 2 days of taking it. It can have some side effects, but we didn't experience anything after the first 2 days besides happy babies that were finally eating! We also switched to soy formula, and added cereal to help keep it down. You are a good mommy, reflux is BAD! :hug99:

 

I also want to encourage the cereal in the bottle. My niece and nephews had severe projectile vomiting and had cereal added to their bottle by about 4 weeks or so. They would vomit every time it was too thin. We would just buy some rice cereal and put it into their formula and it worked great. So maybe a combo of the meds and cereal in the bottle may help. I'm so sorry that you are going through this for so long. It is just heartbreaking when your baby is in pain and you feel like you can't do anything to fix it. I hope you get some answers soon!! Good luck!

 

Oh, sweetie, do NOT feel guilty. You've been doing a great job. Your son IS gaining weight - just not as much as you'd like lately. We can only do our best - and sometimes that is making our babies as comfy as possible and following doctor's orders. BTW: Switching to a special formula didn't help our reflux - just cost us lots of money. Reflux, as far as I can tell, is a physiological problem, especially if it continues more than a couple of months, so WHAT they drink isn't the issue so much as how their body (esp. esophagus) handles it.

 

QUOTE(Lisala @ Aug 1 2007, 03:53 PM) [snapback]353202[/snapback]
The Ped GI made me feel horrible, he said he was surprised that I didn't seek help for this sooner, and of course I followed what my Ped. suggested and was on top of it as much as I could be, but still, you know as a mom you feel so guilty as it is, let alone when a doctor makes you feel like #)&$!!

What the BLEEP is wrong with these "doctors"? My SIL had similiar issues with a GI but thankfully spoke to an allergist (her OB recommended, pedi was clueless). This saved my niece from uneeded surgery and possibly saved her life as she had allergies that weren't present in other family members.

Kick that GI to the curb! You're the one in charge - not the docs.

Both of my sons were diagnosed - one with the projectile/screaming kind and the other "asymptomatic", arched but didn't vomit as much. DH was really frustrated because it happened more wiht his bottle feeding than my breast feeding. (For once, he had more guilt than me.) I was worried because they're both so small to begin with.

Luckily for us, our pedi was GREAT. She encouragied low-intensity tactics mentioned in pps - cereal in a bottle, sleeping in the infant carrier (it worked for 3 months!) and Zantac. She also helped us put into perspective by validating that - yes, it's really hard to watch and it's natural to feel helpless or guilty. She also said that this is really really common (look at all the posts) and often something that changes for the better. Ours were pretty much done by 13 months.

I wish those docs had treated you better. You and your children deserve it.

Hang in there - and get a second opinion...

 

I understand how you feel and you need to find a doctor who has empathy and is focused on giving your child the best care possible. My daughter had asymptomatic reflux, a swallowing dsyfunction, and a oral aversion, which took months and a ped. switch before we were diagonosed. The swallow test was the test that actually shed some light on the problem, and really was not as invasive as I had feared. My daughter was on Prevacid and it seemed to so wonders for her, but it takes a few weeks to build up and give results - do not give up hope yet! We did have a complete blood panel and alleregy panel as well as a swaet test to rule out cystic fibrosis.

We also worked with a feeding specialist who was in our GI practice. They had her on duocal - high calorie supplement to help her gain weight, since she refused to eat. Also, as she got older she was given pedisure instead of milk. Lastly, we were also referred to a speech therapist, not for language but to help with my daughters swallowing and oral aversion.

She is now three and has outgrown the reflux and eating issues. She eats very healthy and is gainigweight at a normal rate for her.

As parent's we put a lot of trust in our PEDs and it is not your fault! We are not doctor's and we have faith that our doctor's will guide us appropiately and for any doctor to blame you is out of line. I would definetly look into finding another ped. GI doctor.

I will keep you family in my thoughts!

 

I cannot thank you all enough for taking the time to lend your support and advice. Really, just reading that so many of you have walked this path brings me comfort - though I am sorry that any of us or our children have to endure this.

I should have said in my initia post that I have tried putting the rice cereal in the bottle - first 1 tsp. per ounce, then 2 tsp. per ounce - it didn't work at all. I have not tried the Enfamil AR, though - can any of you tell me how its thickness compares to that of a bottle with the rice cereal added into the formula? I wonder if it is thicker...

Dylan had both of his test now - so we wait. The UGI test showed no blockages (yay!), and he only refluxed a small amount when they did the test. The Gastric Emptying test (gosh, this was horrible to see him endure - strapped down to a table for an hour!!) was just done this morning and we have no results yet. Dylan drank his bottle, then they put him on the table and strapped him down (kindly as possible, like swaddling) and I sat with him and comforted him while he screamed because he was scared and he finally fell asleep. After the scan when I picked him up and was holding him, he projectile vomited right in front of all of the techs. They said, "Wow, I see what you mean."

So now we have to wait for our GI doc to get the results from both tests (although I know the results of the UGI), and then we go from there.

From everything I have been reading, it seems that a) Dylan might just have to grow out of this with some help from meds and/or b ) he might have an allergy. So, my next step is to convince my Ped. that Dylan needs to see an allergist. I just wonder if I need to switch him to Neocate. We have tried Soy and it didn't help, plus I worry about him being on that for too long.

Anyway... sigh... I really do appreciate your support and input so much. You guys have given me some great info. to ask the doc about. I just want my little guy to feel good.

QUOTE
It was very overwhelming and I didn't even leave my house for a few months because I just found myself constantly cleaning her up and changing her clothes and I just couldn't take it.

Yes, this is how I feel, too. Dylan must go through at least 3 changes of clothes daily, not to mention about 6 bibs. So sad.

I'll pop back in here and let you all know how things progress if you are interested - and again, thank you from the bottom of my heart! :wub:

 

Our DDs both have reflux...it stinks. They do spit-up, but they don't lose the majority of their bottles on a regular basis. I think they had more silent reflux...I could tell it was bothering them (coming up), but not always coming out. So, we saw a GI and we're on Prevacid (3/4 solutab) in the morning and Zantac (1.9mL) in the evening. They seem to work well...it did take a good couple of weeks to see results. But, when they spit up now it doesn't seem to phase them. Also, we put rice cereal in their bottles. I know this is something that some doctors recommend and some don't. It has really helped them, but now that we're on solids we are trying to decrease the rice in the bottles and hopefully be rid of it in about a month...we hope.

I have heard that not all meds work the same for every baby. So, if you the current meds don't seem to work in another week maybe it would be worth trying a different one? We never experimented with different formulas, but I'm pretty sure our reflux wasn't a symptom of allergies.

I hope you find something that works!! Hang in there!

 

Hi Lisa,

Have you investigated a Dairy protein intolerance.. it's very common -- it manifests in many ways and it can be dealt with -- but it takes 3 to 4 weeks to get the proteins out of a babies' system so any test, woul dhave to be that long.

Happy to elaborate.

Teri

 

Well, we got the results back from the emptying test. Normal range was 20-60 min., Dylan was 109 min (or 120, my ped. was talking so fast now I am unsure of what she said), either way, he has "moderate" slowness of empyting, so she suggested Reglan, which I just do not feel comfortable with.

She feels the crux of his problem is the DGE, so she suggested smaller meals more frequently, trying Nutramigen (if that doesn't help, going to Neocate).

So what I am now doing is feeding him 5 oz every 2.5 hours and smaller portions of his solids at mealtime. She doesn't believe cutting out his cereal will make a diff., but I beg to differ and I am going to try it.

I am just so confused because Dylan doesn't fit the classic reflux profile. He can eat a 7 or 8 oz bottle before bed and not spit up and go to sleep and be just fine. He will wake at 5A and have another 7 or 8 oz bottle and I will hold him for 5 min. and put him back in crib and he sleeps another 2 hours, no spit up (or very, very minimal). But then over the course of the day, with the solids and cereal, this is when he seems to spit up so much. He doesn't always cry, but it is obvious that he is uncomfortable.

I would love to hear more about dairy intolerances, please. And also if any of you cut out wheat/gluten, I would love to hear your ideas.

Our ped. said she will do some prelim. allergy screening next week. In the meantime I will try the smaller more freq. meals and keep him on his Zantac and Prevacid and switch over to Nutramigen (am doing that slowly so he doesn't hate it. Today I mixed in 2 oz Nutr. and 3 oz. Gentlease).

Man, this is nuts. It's so hard to figure out a plan of attack, my head is just swimming.

 

FWIW my son hated the Nutramigen so we went with the Alimentum which is Similac's version. Just wanted you to know that there is something else out there if the Nutramigen doesnt go well. He had been diagnosed with a milk protein allergy and reflux at the wee old age of 5 weeks by a Ped GI/Allergist. He outgrew the reflux but not the allergy so we are not challenging him for dairy until he reaches a year. My Ped GI said that a milk allergy is common and most outgrow by the age of 2 if not sooner and that wheat/gluten/etc. allergies are far more uncommon. We were told to give the Nutramigen at least a couple of weeks to work. Hope you are both on the road to recovery.

Rachel

 

Thank you again, everyone for your support and help.

Here is the latest and I wonder if some of you can help me:

The Ped GI called Monday and said Dylan does have delayed gastric emptying (DGE) and suggested Reglan, but when I said I would rather not use that, he said Dylan could be put on Erythromycin 1ml 4x daily, but it might not work. Well, we are going to give it a shot.

Have any of you used Erythromycin for DGE with any success?

He also had his allergy tests yesterday and we are awaiting those results. The nurse took 4 vials of blood from the little guy. He cried but was such a trooper. Gosh, my little man has been through a lot already in his short little life.

We are on Nutramigen 100% now and not noticing any difference (yet, but fingers crossed and trying to have patience).

He is also on Baby Jaro Dophilus (probiotic) that his Ped. thinks will help him, at least to counter the effects of the Erythromycin.

Anyway - just wondering if any of you can tell me of your experience with Erythromycin...

Thanks again! You guys are such a lifeline! :wub:

 

Hi Lisa,

I know that erythromycin has shown, in some studies, to be HUGELY successful in decreasing gastric emptying times in adults with various GI issues.

One thought (this may be waaaay out there) - have they checked his pylorus to ensure he doesn't have some sort of unusual, late onset, slowly progressing pyloric stenosis? This is easy to check via ultrasound, they just measure the pylorus to see if it's enlarged. I know he'd be unusually old, and it's been going on a long time, but PS can be a tricky bugger (my DS ended up with it TWICE - "can't be" "unheard of", "never seen it before"). I'd mention it and when they roll their eyes at you I'd insist on an U/S, he IS a first born male and it's by far most common in first born males (1/300).

As for the doc that made that unbelievably ignorant comment, I'd like to give him a hoof in the nuts for you.

Hang in there. Mine both spit up for the first eight months, they were happy spitters but still, it was so so frustrating and isolating and uck!

:hug99:
Kelly-Ann
Mom to Caroline born August 17, 2005 at 20 weeks, 3 days due to IC
Mom to Ian and Claire born September 14, 2006
All IVF babies!

 

QUOTE(Lisala @ Aug 1 2007, 07:53 PM) [snapback]353202[/snapback]
I am hoping that some of you who have had a baby with reflux can help me to feel better about this. My son has always had issues with spit up, to the point that even hours after a feeding he will still spit up. His ped. was not concerned as long as he was gaining weight, but at his last check-up this past week (9 month visit), he was only in the 5th percentile for weight and I told his Ped. that I was very concerned with his eating issues - that they seemed to be getting much worse, to the point that he can hardly keep his bottle down (he is on Enfamil Gentlease) and also his solids.

She put him on Zantac (1ml 2X day) and Prevacid solutabs (7.5mg 2X day) and it is not making one bit of a difference yet (been on it for one week). He also saw a Ped. GI who ordered a barium swallow test (we have this tomorrow) and a gastric emptying test (still waiting to get an appt. that is sooner than a month away!).

The Ped GI made me feel horrible, he said he was surprised that I didn't seek help for this sooner, and of course I followed what my Ped. suggested and was on top of it as much as I could be, but still, you know as a mom you feel so guilty as it is, let alone when a doctor makes you feel like #)&$!!

I am really feeling bad. I don't know how to help my son. The GI doc thinks it is something most likely beyond just reflux because as Dylan ages, he should be getting better not worse. He did not suggest changing his formula (yet) or anything else. I guess he just wants to see what these tests show.

I am hoping that some of you who have traveled this path can give me some ideas to help my son keep his food down - we already feed him upright and keep him upright for at least 30 min. I cannot give him smaller more frequent bottles because he simply gets hysterical if his bottle is not 8 oz. I just don't know what to do and need some support, please.

Sweetie,
I can so relate to everything that you wrote about. I felt like when my dd had reflux everyone thought I was crazy, a bad mom, etc... We also went with pedi recommendations until they suggested prevacid solutabs. After we started the prevacid, she completely stopped nursing. She wouldn't eat anything, just arching and screaming. I stopped the solutabs and called back to my pedi demanding out month long wait at the pedi GI be shorter. They were "yelling" (not really, but how it felt) at me because she was failure to thrive and couldn't gain wait and yet NO ONE would help!!!
Finally, after many tears on the phone and desperation to find my baby help they sent us for the upper GI with bowel follow through. The results were startling, but I was actually glad to see the results. My dd had multi-episodic reflux, meaning she was having reflux several times a minute. I felt so bad for her, but I was so glad to know that I wasn't crazy. I also felt like now the drs would have to listen.
After completing the test to be sure there were not anatomical problems we returned to the pedi. We couldn't get into the GI, but the pedi called them and then worked with us until we could get in a month later. The med that worked for my dd was prilosec. She took it until she was 13 months. I was skeptical when they told us they were going to try to wean around a year. At 10 months, if we missed or were late with meds she would freak out with screaming, arching, etc... But all of the sudden she just seemed to not need the meds anymore.
She is now gaining weight like never before. She is in the 25th percentile now!!! All the way up from failure to thrive.
Please PM me if you want ot talk or cry. I read your post and I just could feel your pain. I will never forget feeling like I was hurting my baby and I didn't know how to stop. I was literally crying out for someone to tell me what to do. It was an awful feeling. My lowest point as a mother thus far.
Good Luck honey!

 

Lisa,

I've been thinking about you guys all night.

I'd try taking him off all solids. Period. Just for now to see how he does. This DGE is really the cause of all of these problems, correct? It's not like he's a classic reflux kid where there's an immaturity of the gastro-esophageal junction, his probem is that his stomach takes too long to empty, and there's only so long food's going to sit there before it gets ralphed up. Now, he might have some reflux issues as well, but the failing to gain etc. is directly a result of the DGE I would imagine.

So I'm thinking that the solids are just aggravating the problem. Perhaps a stricly liquid diet for now will allow more to get through at a faster rate until they can get the root of the DGE sorted out. Like you said, he does so well with those nighttime bottles. I'm not convinced the new formulas etc. will change much because it sounds like it's truly a mechanical issue - it's just not getting through fast enough.

I'm still focused on his pylorus. Again, as a first born caucasian male, PS would be, by far the most common cause of an issue that looks something like this. Although PS classically presents at a much younger age there are examples in the literature of late-onset pyloric issues (maybe not PS, but things that act a lot like PS). They always say with PS a kid needs to be barfing across the room but that's just not always true.

Anyway those are my thoughts this morning. I'm a nurse, add that to my experience with DS and I could rack my brain about this all day.

:hug99:

 

I think you are doing a great job. What else can you do but follow the specialist's advice and hope that they are going to find help for your DS? :hug99: Don't beat yourself up, you are a vigilant good mom. I hope things start to get better soon. :hug99: