Infant GERD/Delayed Gastric Emptying

[wanting2bamomagain]

I have a 7 month old, whom has been hospitalized 1/2 of his life.  He was in the NICU 3 days after he was born, and put on EleCare for GERD.  Later put on Omeprazole, and then added Axid...tried Zantac in lieu of Axid, due to unavailability while hospitalized in July, but didn't work.  Has had Bradycardia and Apnea, since birth, both obstructive from reflux and caused by central brain issues.  He has had all the reflux testing done, including PH probes, impedence probes, neumogram, polysomniogram, upper GI's x 3, 2 barium swallow studies.  Milk scan showed reflux, and normal gastric emptying back in July.  It was said that his reflux was causing what was believed to be a "vegal response", from sphincter muscle, and caused blackouts, and bradycardia's which were borderline CPR.  A Nissen Fundoplication was investigated into, and determined not necessary at the time, or moreso, was not done because he had a sedation MRI, which landed him in the PICU on a ventilator, due to compromised airway, and severely low heart rates.  The hospital notes state that a Nissen Fundo, was likely necessary in the future.  He was hospitalized in late November for 9 days, due to inability to eat from GERD and diagnosis of Apraxia (a neurological oral motor dysfunction), and placed on an NG feeding tube. Now in December, was hospitalized 2 x since Thanksgiving between 2 hospitals, been in the ER twice, for dehydration, placement of NG feeding tube, severe vomiting, uncontrollable reflux, was found to have delayed gut motility and placed on Eryped.  He is now home, with and NG feeding tube, intermittent 12 hour skilled nursing care, when available (not for the past 2 nights, so I'm stuck pulling 2 all-nighters in a row).  Nonetheless, we are now in a position, and have requested a G tube placement, and also have questioned the need for the Nissen to be done.  With the delayed gastric emptying, there is another procedure which can be done, that I can't recall momentarily as I write this (sorry sleep deprived).  Has anyone had to go through these extremes, and what kind of an outcome did you have?  We see the GI to follow up tomorrow.  The NG tube was put in on a trial basis for 30 days to see how he tolerates.  Ultimately, my husband and I are prepared to move forward with the G tube, hoping to reduce his vomiting, and be able to thicken his feeds, which can't be done with the NG tube, as he has in his bottle since birth; 4 fluid ozs Elecare to 3 1/2 tablespoons oatmeal cereal.  The actual recommended amount was 3 fluid ozs formula to 3 tablespoons oatmeal cereal, but could not suck it through the level 4 dr brown nipple with his apraxia and feeding difficulties, so it was adjusted accordingly.  Anyone in similar situation?  Also, just to note, my 4 children are suspected of Mitochondrial Disease, and have had DNA Buccal Testing done and are awaiting results, as well as 1 of my 4 children has had the genetic, and metabolic bloodwork to confirm possible diagnosis, and awaiting results.  Both which could take months to obtain.

[selmaS]

  Hi and welcome to the GERD forum.

I wish I had answers  for you....my daughter when she was an infant had colic nothing like what your child is enduring....but I know how helpless one can feel when a child is not feeling well.

Try to get another opinion....and if removing the excess tissue is what this one suggests then maybe that is something to consider......maybe the third one will be the charm.....

[Jsink]

hi my name is Jessie and my son had at 4 weeks old had pyloric stenosis surgery came home vomiting stopped for a week or 2 then started back up got re admitted changed formulas still was vomited they did a scans and showed delayed emptying put him on meds did ok at first then vomiting cont so they did a scope and found where there was a extra or over growth of tissue that falls on the opening so it slows all or almost completely blocks off,so causes food to sit the hospital we were at wanted to go into surgery and I wasn't convinced that was the answer got a 2 nd opinion they put him on a NG tube due to him losing weight, he is now off tube and on elecare high calorie still spits up with almost every feeding and now we started solids it's making his reflux so much worse he is on omeprazole and Pepcid 2x! Can anyone give any advice weather it be delayed emptying or about there baby with gerd or acid reflux! Please go to be someone out there that has gone through similar things that can give me some kind of advice I feel so alone!! Thank you!!

[ZJRC]

You said, " or moreso, was not done because he had a sedation MRI, which landed him in the PICU on a ventilator, due to compromised airway, and severely low heart rates.  "

Just another story here...
When my youngest had her tonsils out at age 11, they used a tube that was too large for her airway- (She is the pipsqueak of the family, barely over 5' tall, fullgrown now).

She has had NUMEROUS intubations, due to the many (over20) surgeries that she has had now- And they still sometimes argue with her about what size tube to use...
Back when she was 11, her entire neck and throat swelled up huge- worse than with her tonsils in! This has left her with permanent damage to her throat.
Ask them WHY this happened and what size tube they used.

[ZJRC]

Try first to keep your faith intact.
Know that not everything is to be interpreted as being associated as one more bad thing.
(It is very easy to do that when our children have other medical problems).

This vomiting like a volcano is what my eldest daughter did. Adding cereal to her diet only made her sleep through the night, hehehe. But that was very nice too.
Anyway, at the time, her pediatrician was Dr. Daniel W. Shea- (Who went on to be VP for The American Association of Pediatrics).

He told me that this throwing up would probably go away with no medical intervention whatsoever, by the time turned 1 year old.

>>> He said as long as she gained weight each visit that there were no added worries.
I trusted this man with my life, and so he had become my children's pediatrician as well.
(Furthermore, and I kid you not, she had her last eruption of vomiting the very night before she turned one).

This healing, and with absolutely NO medications!

- - Though I did wash many many blankets and towels each day. ;-)
There *is* such a thing as giving out too many meds, especially for things that will go away on their own, if we allow ourselves to allow them "normal growth".

Many babies have immature 'flippers' at the top of their tummies, and it seems as though "everything" is coming out.
Know that it only seems that way.
Hopefully the weight will go on, and the baby will have wet and soiled diapers- and will heal on her own.

Know too that I raised 4 daughters, and 2 stepchildren as my very own. My oldest was the only one who did this.
I do have a younger daughter who, since she was about 15 has had chronic pancreatitis; so I do know what it is like to have a chronically ill child too.
My daughter has since grown to 6' tall and 170 pounds.

Please, before infusing another medication to her system, ask your doctor exactly how important it is.

My best to you, and to your whole family as well.

[selmaS]

  I wish I had words of wisdom to help u here, but all I can say is if u feel u r not getting the right help from the Drs at hand, research other Drs, even if u have to travel to get some input as to what else could be tried....

  Did the drs tell u to elevate the head of ur DS's crib?...this would allow gravity to help with the acids keeping them down where they belong...I am sure he does better when upright then lying down....

  Even a jumping seat may help as children with this issue try to get on their feet sooner as it is a nature response to the sensation they get from their gut....

  Lying him on his tummy on ur lap and rubbing his back ...down the right and from right to left along the lower back can help stimulate the slow moving GI track.....

   I pray ur DS gets the  help he needs soon and is feeling better and that u as a mom can begin to enjoy the little guy and worry less : )

   <3

[BeckyMozer]

My son is 4 months old and we have been in and out of the hospital since he was 3 weeks old. He started to vomit alot and was not keeping any food down at all so we took him to his peditirician who suggested that I bring him to UNC hospital. I bring him through the Emergency Department and after an ultrasound we discovered that my son had pyloric stenosis. A simple surgery was performed and we went home 2 days later. Well needless to say he contiunes to vomit all of his food up and we were convinced that the pyloric stenosis surgery would have to be performed again but his doctors put it off as a reflux and formula allergy. We tried several different formulas Enfamil A.R., Nutramigen, and now he is on Elecare and they put him on Prevacid and Arythimicin, needless to say nothing has worked. He has lost more weight and was once again admitted to the hpsital on December 22nd and discharged on December 26th after undergoing a upper GI and another ultrasound. They decided to keep him on Elecare and to increase his medicine dosage. We now sit back in the hospital because my 4 month old baby boy only weighs 8 lbs. and 12oz. We had another GI test done yesterday and the conclusion that they reached was that my son is suffering from Delayed Gastric Emptying. We are currently waiting for treatment options. Good luck and I can understand your pain and frustration,

[bigrroy]

My mom's description of me when I was born, to a lesser degree. Mind you, that was 71 years ago ... amost to the day.

I got 'sick' on milk and bread. Acid reflux all my life - controlled now with omperazole (?)

But bile reflux showed up 20 or 30 years ago and it was really nasty. Bile in the throat seems to make breathing almost impossible. Don't dare lie down.

I just 'discovered' that 1 to 2 cups of ice cream settled things down within 20 minutes. Thank gawd. I was at the emergency dept once because of the difficulty breathing. The docs don't have anything to give relief from bile reflux during an attack ... that much I found out.

Frozen yoghurt didn't work - almost any flavour of ice cream worked ... chocolate, vanilla and butterscotch are the ones I've used. Four times in a row - relief within 20 minutes.

I'll say a wee prayer for your young son - and hope ice cream works.

And boys always like cures that include ice cream ... ;-)

Good luck - I've never found anyone that had an 'instant relief' for bile reflux and I've looked since the internet got 'in.'

I hope ice cream works for everyone. Especially your son.

big ole g'pa hugs to the both of you

[selmaS]

Hi, my goodness ur little one sure has been thru a lot in the short time he is here.
I wish I was able to offer u some insights to what u r headed for, but this is all out of my area.But, I will suggest u try the expert forum here on MedHelp the drs there should be able to offer u some advice.

http://www.medhelp.org/forums/Gastroenterology/show/107

For support, come on back here...that is what we do here, share what we do know, and offer support...so I may not be able to answer ur questions, but I can listen : )

I pray u do get ur answers and ur little one is able to get better soon.
"selma"