New and worried

[Anonymous]

My DS was diagnosed with reflux when he was 2 months old. After 2 trips to the hospital because he would go tense and scream while feeding. My family doctor finally referred me to the pediatrician who got him to an ENT in less than a week.

Now we are on the second type of meds, and he is still not sleeping well. He ALWAYS has fluid in his mouth and sounds raspy. 2 weeks ago at our last appointment the doctor mentioned a feeding tube if he doesn’t get better. The last 2 days have been horrible. He’s tired, sleeping a max of 2 hours at a time. Usually he sleeps for 5-6 hours a night solid before waking up every 2 hours til 9am. But he has been waking up wimpering a lot more than usual. I’m scared. He has been gaining weight very well since birth (born 7lbs 10oz and is now over 16lbs and 3.5 months old). I just feel like crying seeing him in so much discomfort. He sees his ENT dr on tuesday and I am scared of him getting the feeding tube. I just want him to be well and to have a good sleep. I am lucky he is a happy baby. Only cries when it really hurts.

[Anonymous]

I wouldn’t jump on a feeding tube too fast. I would wait and see what his weight does over the next month. BTW Jedd had a feeidng tube by the time he was 9 weeks old so I advocate for them greatly when they are needed. They literaly SAVED Jedd’s LIFE!!!!!

Your son weighs more that mmy son did at about 10 months old and he’s half Jedd’a age at that weight!!!!!!!

What kind of med are you using and what form does it com eit (for example is it liquid, compounded, a slolutab)???

Are you thickening any feeds???

Are you keeping him inclined after feeding for at least 30 mins???

Have you had any reflux testing yet, and if so what kinds???

Have you had you DS seen by a ped. GI yet???

Jedd has an ENT appt this a.m. so I’ll check back pater okay???

hang in there……

[Anonymous]

I agree with Jessica, if he is gaining wt well which is sounds like he is there is no need for a feeding tube. That isn’t going to solve the reflux problem and may make it worse. Drool is a constant in our house to this day even though Cooper hasn’t refluxed in almost a year. Some babies I think just aren’t as good at swallowing their saliva as others.

[Anonymous]

I am so sorry to hear about this!

I have to agree with Jessica and Beth here. It sounds like he is gaining well so I am not sure why they would talk about a feeding tube? In fact, Jessica can correct me on this if I am wrong, but I think they start with an NG tube (through the nose) and that goes down into the stomach and often times can make reflux worse b/c the stomach (LES??) cannot close making letting acid splash up even more. So GI doctors are pretty careful about only putting in a tube if it’s absolutely necessary (and there are many reasons for tubes) but for reflux only- and a good gainer, I dont see how unless I am missing something.

I’d def get a 2nd opinion. Maybe try to get into a good GI doc in your area.

hang in there!!!

[Anonymous]

Thanks guys. The doctor was talking about a feeding tube due to swallowing issues and wanted to test them. He has SO much fluid in his throat he’s worried about asparating. I have him sleeping on his tummy because of the fluid. He wakes up smelling like puke, I have to change his sheets everytime I lay him down.

He gave him a sleep test but it didn’t go well. Cayden refused to go to sleep that night. I’m thinking of asking for another one because his sleeping pattern is getting bad. He has dark circles and puffy eyes from being SO tired.

He has also isn’t eating. He has had very little and I don’t know if it is my milk supply. My breast do not feel full like they usually do, and they have been painful with sharp pains after he feeds.

[Anonymous]

Have you had a swallow study done? The one where they have the baby swallow expressed milk and formula that is thickened to different consistencies to see if he is aspirating and how bad?

You might find this helpful:

https://www.infantreflux.org/forum/forum_posts.asp?TID=11511

[Anonymous]

Yep Jill you’re right they will normally do an NG tube for about 2-4 months to see if it will help. Only with older children will they jump right to a G tube becuse well, it’s REALLY hard to place an NG down a big kids nose, they tend to scream kick fight, you get the picture…LOL ;-(

Lemoliana wrote: Thanks guys. The doctor was talking about a feeding tube due to swallowing issues and wanted to test them. He has SO much fluid in his throat he’s worried about asparating. I have him sleeping on his tummy because of the fluid. He wakes up smelling like puke, I have to change his sheets everytime I lay him down.

He gave him a sleep test but it didn’t go well. Cayden refused to go to sleep that night. I’m thinking of asking for another one because his sleeping pattern is getting bad. He has dark circles and puffy eyes from being SO tired.

He has also isn’t eating. He has had very little and I don’t know if it is my milk supply. My breast do not feel full like they usually do, and they have been painful with sharp pains after he feeds.

I agree it sounds like you need a swallow study done. I would also do an UGI so you can see why he is “pooling” liquid. Alot of kids with this issue have Clefts. Is this the case???? I imagine you would have said that already.

I would still get the UGI done to rule out structural isssues within the esophagus that coudl cause the pooling.

Sleeping on the belly is good in some cases with a GERD baby. I would jsut make sure the DR knows that you are doing this OK.

ALL that said to say this…..

IF the child has been evaled with a swallow study and is found to be aspirating while swallowing YES they will place and NG tube even if the child is healthy and is at a GREAT weight. If the swallowing is bad enough.

In that case the child will be put NPO (nothing by mouth) and a tube will be ordered to be palced. At that time as well you should be lined up with a serious SLP who can work through these issue.

I would NOT let them place the tube and put MY child NPO without getting am SLP lined up before hand. Because first of all the NG is going to make swallowing uncomfortable. And you could loose all oral skills very quickly.

Also the SLP will be able to make sure th child is swallowing safely when the child is allowed to swallow. they will also be able to tell you whcih consistancy to thinken the feeds to allow the child NOT to penetrate and aspirate. The swallow study shuld be done on liquids from thin all the way to solids. This will le tthe SLP know where the liquids need to be thickend to in order to avoid aspirations.

Let us know if you have any other questions.

Sorry it took so long for me to pop back over, I had what I like to call an Alexandar day….a no good very bad horrible day….it’s a children’s book….LOL

[Anonymous]

Thanks for your advise Jessica. But I don’t know what SLP, NPO, GERD and NG mean.

The doctor was informed on our first visit that he was sleeping on him tummy. He had to be on his tummy or he can’t sleep. He will literally wake up screaming and hard to calm down, every 10 minutes. And since he has a very strong neck the doctors said it was okay.

I have to say this forums are totally awesome. It is wonderful to have support from people who really know what you’re going through. My mother actually told me that when he wakes up screaming to let him scream. I can’t let a child in pain scream. The sooner I pick him up the sooner he starts to calm down. Thanks for all the support.

[Anonymous]

Our GI specialist put it best-all babies reflux-it’s the degree of acid in the throat that determines whether it needs to be controlled by meds or not. Think about it-have you ever seen a baby who didn’t spit up?

However, if your ped is telling you that they are worried about him aspirating, you may have an issue unrelated to the ‘flux. Our daughter has an immature muscle in her throat that makes her a silent aspirator…basically liquid gets into her windpipe without her coughing it up or showing any signs of distress. We found this out by doing the swallow study. It’s a completely harmless test (other than the horror of seeing what barium does to a poop-peeeeuuuuwww!) and you can see EXACTLY what is going on in your child’s throat. I can say from the other side of this issue that it is a fixable issue. We have been thickening our EBM (expressed breast milk) for about a month, and I can tell that her muscles have improved-I’ve been able to sneak in a few breast feedings and she has not had a choking episode in a month-woohoo!

These ladies give the absolute best advice on meds, talking to your dr, and procedures. They were a Godsend to me when our ‘flux was uncontrolled. My only additional advice is get as ugly as you need to with your doctor to get the best possible care for your child. Now is not the time to be passive with your doctor. Information was what got me to find a new pediatrician, a GI specialist, and the right meds for what ails us. Our DD is starting to inch up in weight, tolerating longer car rides, and is generally a much happier kid now! Good luck and hugs!!

[Anonymous]

Lemoliana wrote: Thanks for your advise Jessica. But I don’t know what SLP, NPO, GERD and NG mean.

The doctor was informed on our first visit that he was sleeping on him tummy. He had to be on his tummy or he can’t sleep. He will literally wake up screaming and hard to calm down, every 10 minutes. And since he has a very strong neck the doctors said it was okay.

I have to say this forums are totally awesome. It is wonderful to have support from people who really know what you’re going through. My mother actually told me that when he wakes up screaming to let him scream. I can’t let a child in pain scream. The sooner I pick him up the sooner he starts to calm down. Thanks for all the support.

Sprru I’ve been MIA today..LOL We had a get together at church and this is my first chance to get on the computer all day. Here goes..

SLP=Sppech Language Pathologist

NPO-this is the medical term for Nothing By Mouth. In the greeks it hadthe initials NPO so hence th reason it is called NPO. It basically means the hcild is allowed NO fluids or food orally. Like, when a child is heading to the OR they will kmake them NPO from midnight on….see…:0)

GERD=Gastro-Esophageal Reflux Disease This is when the relfux is causeing life altering issues. We’re talking eaing issue, and quality of life issues here. Like many of our kids here. As apposed to….

GER= this is basically reflux that is completely under control without meds and the child pretty much is NOT complaining at all. These children are called “happy spitters”

NG=NasoGasric Feeding tube. These “tubes” go in the child’s nose and into the stomach cavity. I have a picutre of one of these…that’s my Jedd Summer of 07…..

Gastric Feeding Tube. This is a permant tube placed in the child’s stomach for feeding and venting purposes….I have a picutre of one of these as well…LOL That’s Jedd this past Summer. And NO he really didn’t eat any of that popsicle. He just liked playing with it.

[Anonymous]

I wanted to break the posts up sometimes pictures can take a bit to upload….LOL

Now back to my original question. If the chidl sounds raspy or gurgly, that woudl concern me. Has the GI recommended to have a Modified Barium Swallow Study (MBSS) done???

They will feed the child or have the child drink a liqud with a tracer in it. They will take picute in Interventional Radiology to see WHAT the fluid is doing when it goes down.

Fro examply is the fluid going down the esophagus and into the stomach or is the fluid pooling somewhere, or is the child swallowing the fluid down and into their lungs????

The child will be given all sorts of “thickeness” fo fluids as well. That way if the issue is from the child swallowing the thicker the liqud the better.

The thickenss are as follows. Thin=reg. baby formula then it goes all the way up to solids in thickeness. I am not sure of all the exact names of the “thickness” becasue Jedd never had any issues with aspirations.

I know they have “nector thickness” and “honey” consitancy.

These are all accomplished with Over The Counter (OTC) thickening agents like Simply Thick or Thick It.

That swallow study (MBSS) will also tell IF the child is aspirating from below. When a child aspirates from BELOW that means that the reflux is coming up and in stead of going out the mouth as vomit the reflux fluids are going INTO the lungs. That is definded as an Aspirations.

The reflux from below is the one you really have to worry about. It can do permant damage to the lungs. The reason it is the worrisome one is because the only way around it would be to place a Feeding Tube of some sort and have the child on a continuos feed of a slow drip. Kind of like an IV for the stomach. By doing the slow drip it will cause ther to be MUCH less fluid in the stomach and thereby (hopefully) ensure NO aspirations.

If that doesn’t work you can alwasy do what’s called “advancing the feeding tube” That means instead of having the tube going into the child’s stomach they willpush the tube farther INTO the child’s GI tract. This is called a NJ or Naso Jejunial feeding tube. Then the food is bypasing the stomach all together this will just about ensure that NO aspirations will occur. NOT always though. There are alwasy exceptions to the rule.

To make it REALLY confusing… They also have NAso-duodinum feeding tubes. Thergo into the nose and all the way into the duodnium in the bottom of the stomach.

And all these feeding tubes acan also be JUST liek the one of JEdd’s in his stomach. They can do the stomach tube just like Jedd’s but they can make the tube reach the Jejunium…..HAVE i REALLY JUST CONFUSED YOU…LOL Sorry, I have been tube feeding since Jedd was 9 weeeks old and he is 22.5 months old now….so it is second hat now.

A child who is proved on a Swallow Study (MBSS) to be aspiration fluids into their lungs when swallowing is normally put on thickend liquids to avoid the aspirations. Evey now and then the chidl *may* be put on a feeding tube as well.

Let me know if you have any questions. You can e-mail me at [email protected] as well. If you are still VERY confused I can give you a call on my cell after 9:00 my time. I’m in VA. It’s free on my cell after that time.

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