Monday, April 12, 2010 Tammy asks

Q: infant acid reflux

My son is 15 weeks old and has a Gtube placed 2 weeks ago. He had an NGT prior but it was creating a granuloma in his throat which caused breathing problems. We had five days before the GT was placed to see him eat without a tube in him and it was beautiful! No reflux sx! Would take 60-70ml by bottle. Got GT b/c his goal was 85ml and he started to lose wt. Problem now is can only take 10ml by bottle then pulls off gasping, coughing and I hear milk going up & down his throat. The surgeon said a GT could make reflux worse & I definately know it did in our case. Has anyone else experienced this? Currently, I am no longer feeding by mouth for fear of aspiration. Also, my son has down syndrome and they say his LES is probably not closing well contributing to reflux.

waiting for an appt w/ped GI specialist.

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Answers (1)

Jan Gambino, Health Guide

4/13/10 6:33am

Hello Tammy, Wow-your little one has been through so much in 15 weeks-first an NG tube and now a G Tube. My daughter had a g tube placed and it took a few weeks for her body to adjust. The surgery can cause some inflammation and swelling so the true test of the tube may not be for a few more weeks. The surgeon or GI doctor may need to check the placement and size of the tube too. We used the MIC Key button. It has a little balloon that is pumped with air so you can adjust how loose or tight the tube is against the skin.

The coughing and milk coming up may be affected by the rate and flow of the tube feedings too. Are you using a pump? You and the doctor may be able to work out a feeding schedule: give the bottle before the tube. What is left over goes into the tube. That way he can have the bottle on an empty stomach.

After you have adjusted to the tube, the pump and developed a schedule, I think you will find that the tube gives you more time to enjoy your little guy and stress free eating by mouth. He can eat as much or as little as he can manage.

Low muscle tone from Down Syndrome can cause feeding problems so be sure to get your little one enrolled in early intervention so he can have physical, occupational and speech therapy. I used to work in early intervention 0-3 services and the early start makes a huge difference. Let me know if you have other questions or concerns about the tube feeding, reflux or anything else!

Best wishes,

Jan

Tammy

4/13/10 11:07am

Thanks Jan for your response. That is a thought about the tube being so new and give it some time.... We have always orally fed him first even when he had a NGT but currently I hold off on it now because he is so distressed! He swallows well but pulls off after taking in 10ml and arches with liquid coming up and gasps and you see him re-swallowing multiple times and has even started coughing. It is so uncomfortable seeing this distress. When I given it slow by tube only, he looks completely different. Just lies there sucking his pacifier with only a few times I hear liquid coming up & he does not usually arch. We have had a speech therapist in the home helping us but the reflux is worse and seems unsafe to oral feed him at this time. I have mixed emotions about the GT. He looks so comfortable puting it straight in the tube but is missing out on the oral stimulation and joy of eating. I know he can do it b/c without the NGT or GT he was drinking 60-70ml and sometimes took 80 & 90. I feel like I want to GT out b/c it has made things worse with the oral eating. Thanks so much in advance for your response b/c this has been a huge stress in our home. We just want to enjoy our son and this special early time and any insight into what is happening and what to do about it is a huge help.

Tammy

Jan Gambino, Health Guide

4/14/10 6:16am

Hello Tammy,

I wonder if you have discussed the choking and gasping symptoms with the surgeon and the GI doctor. Certainly there is an adjustment period after the surgery. My daughter could not tolerate as much volume via the tube just after the surgery but this gradually improved. Of course the doctor told us give her __ amount per feeding at ___ rate and we did it. She screamed with pain because her stomach was not able to hold that much at such a high rate. I moved the rate down to almost zero and found her rate and volume was a lot different. Trial and error-always!

She ate quite a bit less by mouth after the surgery but this was also due to having the fundo surgery at the same time. Her esophagus was quite swollen. If your son did not have the fundo and his choking is worse, it is best to make sure there isn't a new symptom/complication that needs to be addressed. It is also important to rule out aspiration before starting feeding therapy. Your SLP probably needs this information too.

Let me know what you find out. Keep those questions coming!

Best wishes,

Jan

Tammy

4/14/10 8:05am

Hi Jan:

We have appt. w/ surgery to change to a Mickey button at the end of April. I have not discussed the sx. w/him yet. My pediatrician is aware and speech therapist and she is sending us to a pedi GI specialist which hopefully is soon. They also recently increased our Prevacid to twice a day about a week ago. Hopefully, this is just an adjustment period and we will see him orally eating better soon! Thank you.

Tammy

Q: infant acid reflux

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