HELP! REFLUX, FLOPPY EPIGLOTTIS, ASPIRATION

[Anonymous]

Hi Everyone,

My son is 2 1/2 months old. He spent 3 1/2 weeks at Children’s Hospital of Philadelphia, came home for 3 days and is now back at CHOP. I’ll give you the story and I would really appreciate as much info as possible.

 

 

My son Hunter had RSV which was not diagnosed until was transferred after 2 local hospitals to CHOP. HE also had pneumonia due to this. Both are now over with. He always seemed to take a while to feed and he was struggling to gain weight. I’ve found out a lot of reasons for all of this.

 

 

-He has noisy breathing (stridor) and I can see his trachea move back and forth when this occurs (I think this is tracheomalacia).

 

 

-He was also diagnosed with laryngomalacia, which is now supposedly gone.

 

 

-Through the barium swallow they saw that thick and thin fluid go down esophogus and trachea. ENT said internal structure is good, but his epiglottis is not functioning correctly, hence the aspiration.

 

 

-MRI and genetics tests came back good.

 

 

-Milk scan said there is reflux but it’s not coming up high enough for aspiration.

 

 

-Gtube placement 1 or 2 weeks ago (things are starting to blurr)

 

-Given zantac (not for 10 days, not sure if it helped)

 

 

-1/8 came home 9:15pm and put on continuous feed for the night (night nurse care from 11 to 7.

 

 

-He was also on Keflex for gtube site

 

 

-Nursing company bailed on us saturday night and sent some weirdo who couldn’t even talk to explain anything. Not a language barrier, just to total weirdo. (needless to say I made a call to the president of the company and we are done w/ them)

 

 

-1/9 Projectile 60- 80% of daytime feeds. 90ml over 30min.(9am) 90ml over 45 min (12pm), 90ml over 1hr (3pm)(all projectile)

 

Finally I reduced volume to 60ml over 1 hr. (6pm). held it down. Continuous feed at night (smaller volumes of spitup)

 

 

-1/10 75ml/hr (9am and 12pm) held it down. Wife increased to 90ml/hr (I have no idea why (larger volumes of spitup). Pediatrician put him on prevacid 1/2 tab (i forget dose) twice a day. Not sure if it helped, plus I read that it may take a while to have any effect.

 

 

-Not sure what happened w/ sunday night nurse (she was from another planet (read above)). He was on continuous feed 44ml/hr

 

 

– 1/11 10am 80ml/hr as per ped’s rec. small volume of spitup. Go to ped at 11:30. He weights 11.9 lbs. I asked her if we should be worried about aspiration w/ all the vomiting going on. Obviously not all of it comes out and he swallows some of it. She says no. ( I say she’s full of it, it’s common sense w/ his epiglottis issue). She says g tube site doesn’t look good, I think it’s improving and keeps looking better and better.

 

( I think I want a new Pediatrician, unfortunately my wife loves her and she has been very good w/ us in terms of keeping tabs on Hunter and my healthy 2 1/2 year old daughter)

 

 

-Night nurse (new company) says he spit up quite a bit on continuous feed throughout the night.

 

 

-11/12: Go to Ped at 8:30am (Hunter lost 1 oz and she says site looks worse. (unfortunately I had to go to work and could not go this time.

 

 

-Sent back to CHOP.

 

 

-Hunter is on 35ml/hr continuous (I think he needs a break from that ). Spitup (tbl spoon) throughout the night. I think he needs smaller volumes over an hour and to work our way up.

 

 

-They want to try 4 different feeding options and if they don’t work, maybe do a nissen. He is still on his 2nd formula (good start). 1st one was similac. I kind of want to try him w/ similac (lactose free) (which worked w/ my daughter)

 

 

Please help. I don’t know what to do

 

 

Joe

[hellbennt]

hi there!
I don’t know a lot about feeding tubes, etc, but there are those who do…

also: look here to see if there are drs near you/at CHOPs
https://www.infantreflux.org/forum/forum_posts.asp?TID=660

here’s about the ‘malacias’https://www.infantreflux.org/forum/forum_topics.asp?FID=7

[Anonymous]

hello there,

First off reflux is a symptom that SOMETHING is wrong, but it is not the main problem. My DD had most of these issues except she did not have aspiration problems. We did continuous feed for a while and no formula seem to work for her. Giving his history of gut issues, first thing i would try is changing his formula to something VERY EASY to digest and hypoallergenic like Neocate Infant. You can ask your doctor for samples or you can try buying a few cans on e-bay to try it out. Reflux med is necessary until his vomiting issues get under control. I highly recommend you ask your doctor about Zegerid. Also consider digestive enzymes and hypoallergenic probiotics. He is not too little to start those and it can help his gut recover faster. i would recommend:

probiotic

http://www.kirkmanlabs.com/ViewProductDetails@Product_ID@186@[email protected]

you can read more about enzymes here and how they can help your baby.

http://www.enzymestuff.com/digestion.htm

I know all this info may sound overwhelming (that’s how i felt), but you’ll find good support here. Just ask questions.

I also recommend you wait until your baby’s gut is stable to give him any vaccinations and let them give him 1 or 2 at a time instead of the whole mess they suppose to get. Vaccination will make her gut issues worst since his immune system might be overworked from all his recent issues.

Also, i would try elevating his crib matress at a 30 degree angle to help him with the spit up. I used a Tucker Sling when my dd was younger and she slept much better when we used it.

kendramom2010-01-13 22:52:03

[Anonymous]

Thank you for your help. My son is back out at the Children’s Hospital of Philadelphia and I am praying they finally get their scheduling figured out due to the fact that they will be performing surgery next week on is upper stomach/lower esophogas. In short they will be performing a nissin (sp) to tighten that muscle.. We’re still waiting to hear from the surgeons as to what the pros and cons are. he is now being fed by a ND? tube. basically up the nose, down the esophogus, through the stomach and into the small intestine. I actually just got back from the hospital. I was there since thursday and I was starting to lose it.. My lovely wife is on her way back out there..

Thanks for your help.. Joe

[Anonymous]

I am sorry to hear your son is in the hospital and getting ready for surgery :(.

I would recommend reading up all you can about nissen before the surgery. It is unreversable and does not always take care of the gut/esophagus issues. My dd was very close to having one done until we decided to put her on a very hypoallergenic diet. Her reflux inssues improved and the nissen was not longer an option.

Best of luck and i hope all works out for your son.

[Anonymous]

We also had talk of a Nissen Fundo as a last resort. But I never wanted to go that route. I’ve heard of some babies do well on it, but also heard far many more difficult stories. Like Leo said, try to read up as much as you can, and go prepared with a list of questions to ask the surgeon beforehand. There are different approaches, and different outcomes. Check this out before hand:

http://www.infantrefluxdisease.com/forums/showthread.php?t=32976

[hellbennt]

Christine (kevieb)’s daughter had this done- I’m sending her an email to respond to this post

[Anonymous]

why are they wanting to do a fundo already? it doesn’t sound like you have exhausted all your options yet. his weight doesn’t seem that bad for only being 2 1/2 months old. if he is not refluxing high enough to aspirate a fundo isn’t going to stop his aspirating—-especially since his aspiration was coming from eating, not from spitting up. there have been a number of babies on this board over the years that did some aspirating without it causing serious complications. i think the body will reabsorb the fluid if it is not large amounts and as long as the child isn’t getting pneumonia or breathing problems from the aspiration. since your child is on a tube directly to the intestine, there should not be much chance to aspirate while eating. it also sounds like he doesn’t spit up too much if his feeds are kept at a lower flow.

my daughter had a nissen fundo when she was almost 10 months old, but she was failure to thrive, anemic, refluxing almost 15% of the time and her esophagus was getting ulcerated at 8 months old. she also had 2 upper gi’s, a ph probe, and a scope done before they did surgery. it turned out that she had a good sized hiatal hernia that had not shown during any of her testing. she has done very well since her fundo and never had any of the complications that children can get from having a fundo done. she did continue to be failure to thrive until she was 2—but there were a few other things involved that caused that. since she was 2 and we corrected the other problems, she has hardly seen a doctor again. she is now 6 years old and in kindergarten. she has five tiny scars from her surgery. she is able to burp, but she is not able to throw up.

i think i would put off doing surgery for now, especially since it sounds like the problem is more with your son’s epiglottis not working correctly when he swallows—-rather than reflux, which is all that the fundo would fix.

[Anonymous]

joe, i don’t know how much they told you about the actual surgery, but it does not tighten the valve, it creates an artificial valve. they wrap the top of the stomach around the bottom of the esophagus and then they staple/stitch it in place. i posted a picture of sylvia’s surgery on the little gerdlings site that shows what was done inside her gut—if anyone knows how to direct you to that site you can see what they actually do—-i can’t remember how to get there.

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