Infant Reflux/Gagging Problems (Long)

[mom23boys]

This is my first post on the Community Board, I hope you can help.

Background, my DS now 28 months has had reflux and delayed gastro empting since birth. He is underweight, weighing 24 pounds. We have been to several specialists (GI, Feeding team at Childrens Hospital, and ENT) our last appt. was at the Diagnosis Center also at Childrens to determine our next step.

Basicilly I was told to stop chasing my tail (in a really nice way), he was born this way and he may/may not grow out of this.

He also has a hyperactive gag reflex that when food he does not like the texture of he gags and usually vomits. Also touching some food textures makes him gag, ie. peanut butter and some pasta.

He is still on formula, and his main source of calories comes from creamy foods, ie pudding, yougrut and icecream.

We do have feeding therapy once a week.

Just wanted to know if anyone else has this problem.

Currently he is on Zantak and Prilosec.

Sorry if this is long but thought I would through out all the facts first.

 

[TinkBoo&ElliesMum]

My oldest DD had un-treated reflux and at almost three is doing well and finally eating more foods.

The baby has had severe reflux, she was hospitalized after an apena spell due to reflux. She's on previcid now and it's made a world of difference. She still has moments of strong reflux and gags several times a day. We're hoping she'll out-grow it, she's three months old now and just hit 12 pounds 8ozs after being born at 7lbs!

Good luck with your little one, it's not fun!

 

[momof2inPA]

Just offering support. I'm sure you are doing all you can. Have they ruled out food allergies?

 

[Tigger&Belle]

How tough to be going through that! One of my boys was diagnosed with reflux (my kids were such spitters they probably all had it, but Zachary had asthma and we were trying to determine if reflux was aggravating the breathing problems, hence the diagnosis), but it wasn't severe and he didn't have a problem gaining weight.

The gagging I have gone through with all 3 of my boys. My oldest son (I also have a daughter that did not have this problem) would throw up so easily and I always joked that he threw up in every restaurant that we ever ate in. Why I continued to bring him out to eat I have no idea.

All he had to do was just barely have a choking sensation and he would urp. My other two boys were similar, but not quite as bad. Swimming was a problem since they'd swallow water, cough, and throw up. My youngest is now 4 1/2 and this summer he finally learned to hold his breath under water and can now take swimming lessons without me thinking he will upchuck.

I do still have to watch my youngest and barf buckets are part of our decor both in our house and our van. My 11yo has no problems, but my 14yo still has to watch how much he eats and how fast or he will sometimes throw up. Also, if he coughs he sometimes throws up (and then says he's sick and needs to stay home from school...). With my boys I've learned not to consider them sick unless they've thrown up a couple of times.

I hope you find some answers to your sons problems and/or he outgrows them soon!

T&B

 

[Serena]

Let me tell you a story.

When I was working at a daycare, there was a little boy with this. I'll try to make this short, but by the end of a year, we had him eating. In the mean time, he had a feeding tube we had to use to feed him special formula.
It was a long slow process, mainly using very tasty oatmeal cookies.

We weren't nurses, but we asked his parents first. They okayed it with the doctor. Mainly, it couldn't hurt.
We went from where we couldn't put the cookie near his face, to him actually eating it. I repeat, it was incredibly slow.
Starting with him just touching the cookie, then us touching it and then putting our finger on his lips. From there, we touched the cookie to his lips, and then him actually licking it.
By that time, his taste buds were jumping for joy. We went from feeding him a crumb, a miniscule crumb, to an actual piece of cookie that he had to swallow.
His doctors and parents were so thrilled. And so were we.

 

[Serena]

bump, I didn't mean to kill the thread.


Anyone else have any ideas.

Mom23boys, I wish you a lot of luck and hopefully he can overcome this.

 

[HisEllyNelly]

No advice but plenty of hugs. My now 11 year old DS had reflux. It was before they had the medicine for it. God it was scary as from day one he would vomit soon after eating. He was dehydrated by the time he was 24 hours old. They flew him into boston by helicopter as they were unsure what the problem was at that point. He was diagnosed with the reflux and the only way to treat him at the time was to weigh his formula down with cereal to try and keep it down. Poor baby no one but my DH and I would hold him after he ate. He could vomit at any time. He finally outgrew it at about 18 months, but never had a problem putting on weight. He was 30 lbs at a year...lol.
Good luck.

 

[Tigger&Belle]

HisEllyNelly, I'm surprised that medicine wasn't available for your son since my child who was formally diagnosed with reflux (by a milk scan test) is also 11yo. He was on 2-3 different medications at different times, so medicine was around.

Glad that you son also didn't have problems putting on weight.
When they did the milk scan test on Zachary, they commented that he clearly didn't have trouble putting on weight. We were hoping that the reflux was causing his reflux, but no such luck and the asthma stuck with him a lot longer than the reflux and gag reflex.

T&B

 

[Piglet]

mom23boys - my almost 8 yo DD sees a GI at CHOP. She had severe reflux and damage to her esophagus but wasn't really diagnosed until she was 4, mainly due to some other medical problems they thought were causing the stomach pain and vomiting. She went through so many tests and they started her on Prilosec, it took a while to get the right dosage to relieve her symptoms, but after they did that, she was like a different child. Actually wanting to eat and not gagging. Before they got the meds right, she was malnourished and lost so much weight. Now we are at the point where her Dr. is decreasing her doses and she is doing great so far. We are hoping to have her completely off of them eventually.

Hugs and Prayers to you and your son. Hoping you guys get something that works soon.

Melinda

 

[VALDAN]

My DD was diagnosed with Reflux when she was about 2 months old. She could never drink more than 3 ounces of formula before vomiting . So I insisted on seeing the specialist soon. They put her on Zantak for about a year. I don't remember her gagging.
She did out grow like the doctors said. She is now 10 and her weight is good. I'm sure everything will be fine, looks like you taking care of it nicely.

 

[HisEllyNelly]

Originally posted by Tigger&Belle
HisEllyNelly, I'm surprised that medicine wasn't available for your son since my child who was formally diagnosed with reflux (by a milk scan test) is also 11yo. He was on 2-3 different medications at different times, so medicine was around.

T&B

Hmmmm well I always just assumed that the medicine wasnt around. Maybe they tried the cereal trick first and since it worked (mostly) they decided to stick with it and not use the medicine.

 

[mom23boys]

Thanks everyone for your replys. Reflux really is a horrible thing for children. I wish he never had it. To answer some questions, yes he was tested for food allergies (only allergic to egg whites, but it was a level one so no need to worry). We also did a milkscan about a year ago, thats when they found the reflux, eight times in one hour and his stomach only emptied 23%, normal is 60%

Barf buckets are defintely in my home decor also, and you know Frabreeze only works so well, I think I am amune the the smell of barf now.

Serena, thanks for your post, through feeding therapy we are also using the same techniques to get him to eat. It has been better, he is reacting in a positive way. I also use playdo and painting his hands with glue or paint to feel different textures, he does not like it all the time but we are working through it.

Nelly, my oldest boys were about that weight at a year, thats why I was so confused with him. With my oldest two food was always eated, and never an issue. He is our little man but boy is he tough. The youngest of three boys he has to be.

Thanks everyone you have really been a huge help.

 

[ahutton]

My younger DD had terrible reflux until they put her on Prilosec 20mg twice daily. By then she was about 9 months old. It was horrible. She is now 2 1/2, and we find we only need to give her Prilosec for a week or two every once in a while, most often if she is teething or hits a growth spurt and is so hungry she'll eat herself sick. Otherwise she is a happy, normal child. I will say however, that she also gains weight very slowly. She was 7lbs 7oz at birth - 75% percentile for those first few weeks. Now she weighs only 23lbs. But she is growing steadily, just gaining at a slower pace than she is on height. Our ped has said not to worry, as long as she stays on the same growth % line we are fine, even if it is the 5% line!

With regard to foods, we've just introduced them like we did with DD1 who had no reflux. We've put things on a plate cut small enough that she isn't likely to gag or choke, and let her learn about them herself. This was a saving grace for us, she has learned about how good some foods are and loves many things now.

One of the things we did early on also was put Acidopholus (comes in powdery packets from the pharmacy but is not a prescription) on her food. It is an enzyme present in our digestive system, and this helped boost hers so food moved through. Another thing they did when she was small was used a medicine called Reglan - it speeds up how fast the stomach moves food so they are less likely to have the nasty stuff come up. Don't know if they've tried that or not. Hopefully this helps!

I know how awful it is when the cries don't stop, they are hungry but they've learned that eating has bad consequences so they don't want to anymore. I was lucky our ped was very well educated (had done much of her residency in ped GI) and got us on the right track before her first birthday.

 

[Desnik]

My heart goes out to you. I kind of know what you are going through. To give you some back ground info here are links to my ordeal with reflux and my DS:
http://www.disboards.com/showthread.php?s=&threadid=393604
http://www.disboards.com/showthread.php?s=&threadid=484973
http://www.disboards.com/showthread.php?s=&threadid=489189
http://www.disboards.com/showthread.php?s=&threadid=493937
http://www.disboards.com/showthread.php?s=&threadid=562608

I haven't been around these boards much lately but I wanted to post to give a
I know how hard it is when your child is sick. To update my son was on prilosac and it helped the vomiting. He is now 19mo and just started walking and weighs 20lbs. They say he will be alittle behind now because of all he went through but will eventually catch up. For awhile we had a problem with him and textured food. He also has a very sensitive gag. It took alot of trial and error with different foods. Luckily I was able to do it on my own and not have to go through theropy and such. Reflux is a horrible thing and I wish my little man didn't have to go through what he did. He is now doing alot better.

Good luck.

 

[LuvN~Travel]

My youngest nephew has the reflux/stomach emptying problem, too. He's now three and it has lessened over time. One thing my sister has found out is that a milk allergy seems to be his biggest problem. If he eats milk products...here it comes! However, other foods don't seem to be a problem. He does have a great appetite, though, so not eating certain textures isn't an issue for them. And, yes they have fun following him around just listening for the warning cough!
Of course now their biggest problem is the Terrible Threes!
Good luck with your son.
Kim