Posted By Posting
Jun 19, 2011
littlesprout2011
Charlie Faith - MSPI, born 11/18/2009
Grayson Joel - MSPI, born 05/14/2011, severe reflux, possible laryngomalacia, one episode of apnea lasting 30s requiring resuscitation
5 Week Old on Prevacid, Miserable!
I'm new here and hoping for some insight... I have a 5 week old son who was diagnosed with reflux at 3 weeks and put on Prevacid. He was projectile vomiting at least twice per day, with painful refluxing, spitting, hiccuping, and gas throughout the entire 24 hours (meaning he was - and still is - completely miserable). Last week, he projectile vomited while sleeping in his bed, which is elevated with a wedge, and aspirated and choked to the point where he turned blue and I had to resuscitate him. Scariest moment of my life. I brought him to the Stollery Children's Hospital, and they checked him to ensure he did not have pyloric stenosis or another anatomical abnormality. He had an upper GI study done, which confirmed his reflux, and we saw a speech pathologist to get some tips for feeding and to have his swallowing evaluated. He is EBF, and taking the Prevacid in compound form twice daily (1.25mL per), as well as simethicone drops and gripe water to try and help when he is extremely inconsolable. We will be having a swallowing study done in the next 4-6 weeks and follow up with the speech pathologist at that point. I guess what I want to know are the following things: 1. Is it normal for him to have this much pain with refluxing still after over 2 weeks of the Prevacid? 2. Are there any natural remedies I can try that others have had success with (chiropractic, acupuncture/pressure, probiotics, aloe vera juice, etc)? 3. He still hasn't made any 'happy noises'. He sounds like a pterosaur with a frog in it's throat with every noise he makes, and he also wheezes and gasps and squeaks all the time. In other words, he never sleeps soundly and neither do I. Is this normal? 4. What signs of infection should I be watching for? How will I know if his ears or sinuses are infected? 5. Is there anything I can do to help with his breathing? We are pacing him at the breast during feeds, and pulling him off to burp during and after every letdown, which has seemed to decrease the actual spitting, but the refluxing is so bad that I can hear it, and he screams in pain. Any insight would be wonderful. Oh, and he is suspected to be MSPI, as he had the same symptoms as my daughter around 2 weeks (green, watery, foul-smelling stools with globs of stringy green mucous), but his stools are normalizing now that I've been off dairy for almost 3 weeks! Thanks - so glad I found this board!!!!
Jun 19, 2011
seaturtle76
I dont know about the prevacid dose. We have always done the solutabs. Also my son is also on zantac. We just started going to a chiropractor hoping that he will get some relief and we can wean his meds down. I will say he never had any relief until I increased him to 15mg of prevacid twice a day. I think with prevacid you dont get much relief until they are on the right dose. Someone on here will be able to tell you if that is an adequate dose for your son. I wanted to ask if the hospital has him wearing an apnea monitor when he sleeps. Also have they checked his airway? If he is always squeaky I would suspect an issure with his larynx. Hope you get some answers soon. You have definetly come to the right place.
Jun 19, 2011
jeddsmommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
I don't have alot of time and will get back to you tomorrow...I promise.

Someone correct me if I am wrong but I'm pretty sure that Prevacid has lactose in it....there in could lie one of the problems.

Also, a compound won't work as well, they lose effectiveness really quickly if they are not made right.

Will get back to you soon.

Jun 20, 2011
jeddsmommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
I am up now and leaving for work soon but, I'm going to answer a few of them now by the numbers you listed to help.

#1: Yes some kids do have that much pain with GERD. The meds can take a bit longer to get into their system to work. Also, a compound does not work very well. I would try to get the solutabs and use them. It should work much better. I am suspecting that he is reacting to the lactulose in the meds and that is not helping either.

#2: we have not tried any natural remedies with Jedd. Others here have so they should chime in soon.

#3: When you say he was watched and eval. by a S.T. for his feeding, did they actually do a swallow study or did she just watch him eat?

With those types of noises, I would want them to do a swallow study on all thicknesses to make sure he is protecting his airways when he swallows and eat. That way you know for sure that everything is fine when he is eating.

I will get back to you on the rest, I need to head to work, I work a long day and will get back after Jedd goes to bed.

Jun 20, 2011
dcd
Prevacid solutabs contain dairy. We make our own compound using the beads from regular Prevacid capsules and Buffer Babies. (Learn more at marci-kids.com and refluxsolutions.com) If there is a compounding pharmacy nearby, you could have them compound the med for you (but it's only stable for 2 weeks at a time).
Jun 21, 2011
vigilantmom
Ryan was born May 20th 2008. 9 lbs 2 oz. Ryan’s magic bullet was 30mg of Prevacid capsules mixed with Caracream from Marci-kids (I am forever indebted to the team at Marci-kids), Claratin for the mucos, and Mirlax for the constipation. Within 2 months of this combo he jumped from the 6% to the 50% for weight and continues to climb. Be strong, listen to your instincts. Read his story for more specifics that just might help you too - Karen
Yes, the solutabs has the lactose in them, the regular prevacid does not. I did the caracream just like DCD then changed to Zegrid OTC mixed with Caracream Z. Loved it. YOu can also get a script for Zegrid powder packets. Those are great too but can be spendy depending on your insurance. If you stick with prevacid make sure you are giving it on an empty stomach and feeding 30 minutes later. That is key for prevacid unless you are mixing it with caracream. As DCD said, please be sure to check out www.marci-kids.com.
Jun 21, 2011
littlesprout2011
Charlie Faith - MSPI, born 11/18/2009
Grayson Joel - MSPI, born 05/14/2011, severe reflux, possible laryngomalacia, one episode of apnea lasting 30s requiring resuscitation
Update - Pediatric Chiropractic
So we went to the pediatric chiropractor yesterday, just to try it out. We are supposed to be weaning G off of his Prevacid over the next 3 weeks (until he is 2 months old) to see if he can tolerate it, so I thought I would try something else to give him a little relief. Even having worked for several chiropractors in the past (I am a registered massage therapist) I was extremely skeptical, but...WOW. My normally super squirmy, fussy, screaming, puking baby laid there on the table completely calm from the moment she put her hands on him and started gently adjusting his spine. What is even more impressive is that he stayed calm WHILE AWAKE for a full hour afterwards, and even made a couple of 'happy noises', which he had never done until that point. He is still a little bit fussy after his feedings, and overnight, but more what I would expect from a 'normal' newborn (my daughter literally did not cry at all until her 2 month vaccines after we brought her home - she was an awesome, super happy baby). I am so extremely happy, and going to continue treatment, so I will keep posting updates and hopefully have him off his meds at the end of 3 weeks! Yay!!
Check with your
doctor first!