Posted By Posting
Oct 03, 2010
tnqangel
What to do next?
I have been reading through these forums a lot trying to find as much information as I can about reflux. And so far have found some really helpful ideas. But I figured its time to tell my story in hope for more direct advice or maybe just reassurance since I am scared to death to feed my son most of the time. My son was born on August 31, 2010 and for the first couple of days he did not appear to have much trouble with eating other than he had a strong preference for the right side during feedings. But after a few days he was breastfeeding good from both sides. Once my milk came in I noticed he was getting a lot harder to feed. He would arch his back and let go frequently during the beginning of feeds. He would gag and cough and sometimes scream. I started getting a bit concerned by about 10 -11 days and charted all of his feedings and reactions during the feeds. I was going to show it to his doctor at his 2 week check up. But then when he was 12 days old he had what I refer to as a choking episode. It was about 15-20 mins after his feeding and he was asleep in the bassinet when he started to gag so I checked on him and he had thick mucus like stuff coming out of his nose and had also thrown up a little bit. He was struggling to breath and after failed attempts of trying to beat it out in the downward position I ran and grabbed the suction bulb and started trying to suction it out, by this point he was only able to take a breath every 30 secs or so and was starting to turn blue so I ran to my neighbors apartment across from me and had her call 911. I kept suctioning him until then. By the time we got to the hospital he was blue/ashen and not breathing. They cleared out a bunch of more yellow mucus and sent us to a childrens hospital. We spent the next 6 days in the childrens hospital seeing alot of specialist. He saw an ENT, OT, Speech therapist, and a geneticist. He had a modified barrium swollow, chest xray(no fluid in lungs), endoscopy, ekg(I think thats what it was called), genetic testing, and many others. His diagnosis are - velo pharyngeal insufficiency, naso pharyngeal reflux, laryngomalacia, and gastro pharyngeal reflux. He has the silent reflux and does not throw up and rarely spits up at all. In fact he is only a month old and has already gained 2 pounds above his birth weight. They have him on thickened feeds with thick it, upright eating, staying up after feeds for atleast 20-30 mins, and elevated sleeping. A few days ago we switched his formula to the nutramigen lipil(I quit bf when he was 3 weeks old) because he was having explosive diarrhea and really bad gas. That did wonders for that. He is also on Ranitidine(zantac) 3 times a day .75ml/10mg. I dont think its really working any since he still arches his back and screams alot - more during burping than feeding though. My main concerns at the moment are his breathing since he often chokes and gags during feeds and then quits breathing for up to 15-20 secs, this is one of the biggest fears since I never know if he is going to start breathing again. Also he will stop breathing sometimes for a few seconds while he sleeps followed by a period of very rapid breathing - often accompanied by loud wheezing which they say is the laryngomalacia but I am beginning to wonder if he doesnt have asthma - his father had childhood asthma. Second concern is the pain he is in during feedings - I am scared to feed him half the time because I know he is going to start screaming in pain. When ever I burp him I can hear the acid come up but then he swallows it back down. I think he does the same thing with burps since it is very hard to get a burp out of him. By the time hes done burping he is so exhausted from screaming he ends up falling asleep after only 1oz only to wake 15-20 mins later wanting to eat again. To my understanding he is comfort feeding. But the doctors want me to put him on a schedule of 2-3 oz every 3-4 hours and they tried that while he was in the hospital and he would scream for the last 2 hours and would not sleep until he got fed again. He wont hardly sleep laying down but sleeps great if I keep him up on my shoulder or chest. I guess my question is what do I do next? I am thinking about taking him to either a pediatric GI or a chiropractor, do you think either of these will help? Any other suggestions? Also what is everyones opinion on colic calm? I am thin king about trying that. I want to get him off the zantac if at all possible. Thanks for reading.
Oct 03, 2010
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
Colic Calm will not do anything for reflux. It is for colic. What are your reasons for wanting to get him off the Zantac. If he is still screaming he likely needs something stronger, not something less. I would request a PPI such as prevacid, prilosec or nexium. Was he tested for milk allergy while he was in the hospital. As far as a pediatric gi vs a chiropractor.. definately start with the ped GI. With all the tests that he has had done, doesnt he have one already?
Oct 03, 2010
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
Have you gotten the results of any of those tests yet? On the swallow study was he cleared for what type of fluids? Also, did you have an Upper GI (UGI) series done as well at that time?

I think you need to call ASAP and get a Ped GI and a Pulmo. involved right away. I'd call tomorrow morning and get your Ped. to call in the referrals and have them get you seen right away saying it is an emergence to get you seen.

I don't think it's wise to come off of the Zantac, not at this time. Actually, I think and this is JMHO that you need to get a PPI on board as soon as possible which is a stronger med than what you are on now.

Wiht all the breathing issues has he ever run a fever? That can be a sign that aspiration has occurred, hence the reason why I think you may need to get a Pulmo on board now.

(((HUGS)) it seems like you have lots going on right now!!

Oct 04, 2010
tnqangel
Thanks for the advice, he has an appointment with his pediatrician in the morning I will definitely talk to her about the PPI and getting referrals for the Pediatric GI and Pulmo. The reason I was wanting to take him off the zantac is because I don't feel like it is helping anything. He is still in a lot of pain and I don't wanting him taking a medicine that isn't helping. He just saw the pediatrician on Thursday for diarrhea and at that time he was on 1ml 2x a day and we switched it to the .75ml 3x a day and it still does not seem to be making a difference. He started the zantac on the 18th so I would think that its had plenty of time to start working by now. As far as the test results - the barium swallow showed that the flap that closed off his nose during feedings wasn't closing when it should and so when he eats it would go about half way down his throat then kick back up into his nose. They said they were really surprised I did not see it coming out his nose because of how far it went into his nasal passage. They changed the elevation to 90 degree angle and that lessened it but was still occurring frequently. Then we tried the thickened feeds which we did not get a real long look at since he was getting pretty full by this point but from what we saw - the thickening and and upright feeding reduced it the most but did not completely get rid of it. He is now on thick it to nectar consistency. I was not told the report from the geneticist but am under the impression that no news is good news. Same goes as the EKG. I am not really sure what an upper GI series is but I don't remember them saying anything about one. So far the only doctor he is seeing right now is his regular pediatrician, the rest of the doctors he saw was while he was in the hospital. As far as the fever, he has had a couple of low grade fevers while he was in the hospital but I haven't noticed any since hes been home - the chest xrays came back normal, no fluid in his lungs but I will definitely be watching closer for fever now - I didn't know that was a sign of aspiration. I am scared I will miss it if he aspirates or if he gets a cold since he has the laryngomalacia and makes a lot of wheezing noises to begin with. Thanks again for the advice. I now have an idea of what to talk to the doctor about at tomorrows appointment.
Oct 04, 2010
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
OK, the Ped should be able to give you a RX for a PPI like Prevacaid. That way you can get it started. I wouldn't come off of the Zantac yet, as least it *might* be doing something even if it is minor. Once you start the PPI you can stop the Zantac.

If you had a swallow study done, they may not recommend getting an UGI done. did they say if the "flap" had any malformations to it at all? That can cause these issues as well. My Nephew had that for years and then bam, he had an UGI done and his flap was curved badly, surgery fixed it and all of his issues went away.

Sometimes what is diagnosed as GERD can actually be something else, like that was or in cases of kids who have cyclic vomiting syndrome or EE.....the symptoms are the same but it's a different "disorder" at the root of it. Hence, testing to make sure.

More often if aspiration is going on you will see a fever and a pneumonia will occur. You can have micro aspirations and over time they can build up, so you really need to speak to a Pulmo about it, they will know best what to do. Alot of time the Pulmo want to take a small lung biopsy to see what's going on too. they may want to wait until more issues appear though, it's not a first step or I would imagine it's not the first step.

For now while you are in the holding pattern, I'd continue with the thickened feeds and keeping upright. As hard as that is, I'd wait until you see the specialist and let them weigh in on what to do.

Oct 04, 2010
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
YOu may have mentioned it but I can't remember....are you elevating his bed at all to help with sleeping?
Oct 04, 2010
lorenzomama
Lorenzo b.4/25/07 1 week in NICU w/ aspirate pneumonia from a reflux episode; diagnosed GERD at 9weeks; Used Zantac for 5months. Currently using Chinese Medicine and Craniosacral Therapy. GERD, Obstructive Sleep Apnea, Sensory Processing Disorder. Ask me about breastfeeding a refluxer! Pic: day 5 in the NICU.
You've already gotten lots of great advice, but I'd like to add a couple of things. First of all, I absolutely would not take the "no news is good news" approach. Our health care system is too overwrought to take that chance, in my opinion. Not only that, I highly recommend getting a hard copy of EVERY TEST RESULT -- because not only can it be a real challenge to get multiple doctors talking with each other and having the appropriate test results in hand, it is a valuable tool for you to learn more about your child's condition, and it is also an opportunity for you to confirm that the results are being interpreted appropriately. I say this simply because my son has had several tests come back with extremely important information contained in them, but not the information that the specific doctor was looking for -- it was only because I was looking at the results and questioned why certain things showed up that we uncovered some very important information about my son's challenges.

As far as aspiration goes, especially with your husband's history with asthma DEFINITELY get in to see a PEDIATRIC pulmonologist. Aspirations can occur for a lot of different reasons, and they don't always lead to fever or pneumonia -- but they can cause a lot of damage to the lining of the lungs regardless, so it is very important to have someone keeping tabs on that.

Regarding Colic Calm, we had some success with that as an in the moment pain reliever, as it is somewhat thick and coats the throat, offering some relief temporarily for some babies. I would definitely describe it as just a "band-aid" though... If you are open to alternative treatments, we have had some success with both Chinese Medicine and Cranio-Sacral Therapy. Neither has eliminated the reflux entirely but they have helped immensely with some of the piggy-back challenges he has had (swallowing troubles, depressed immune system, anxiety/tension, etc.). I'm happy to talk with you more about them if you re interested.

And finally, ((HUGS)) -- this can be a really exhausting path, and I just want you to know that we have all been, or are on it, with you...

Oct 05, 2010
tnqangel
Ok we went to the pediatrician yesterday and she switched him to Prevacid 1.33mL of 3mg/ml. She wasn't real clear if she wanted him taking this instead of the zantac or in conjunction with it but I think it was suppose to be instead of. I am trying to get a hold of her to find out for sure. Also, she set us up for an appointment on November 1st with the pediatric GI but after another scary choking episode (quit breathing for about 20 secs). I didn't get an appointment with the pulmo but I am calling back today and pushing for it and a sooner appointment with a GI if at all possible. I am about ready to take him back to the hospital. The strangest part that we can not figure out for anything is that he does ok with his feedings during the late night hours and mornings - hardly no choking, gagging, or stridor noises at all. But for some reason he starts getting progressively worse in the evenings. At noon its for the most part fine then by 3pm there is a noticeable difference (more reflux, more coughing, gagging, and starts eating less at feedings) then by 4pm I start getting scared to feed him (only takes about an ounce every hour- starts choking everytime he burps and acid comes up - will stop breathing when trying to burp him for up to 20 secs sometimes, and he will arch his back and scream like you are trying to kill him when he has to burp and sometimes and will continue for several minutes after.) He continues like this and gets the worse by around 6pm through about 8 or 9 pm. He does not hardly sleep more than 15 mins at a time during the 3-9pm time frame. But then sleeps for up to 3 or 4 hours usually from around 9pm til 12 or 1am. We have no understanding why it would be worse in the evening. At first we thought maybe it had to do with his medicine times because he was getting 1ml of the zantac at noon and midnight. So we tried switching to the 3 times a day at .75ml - given at 11am, 7pm, and 3am. But that didn't help any either. Now he just started the Prevacid and I gave at 6pm yesterday which was followed very with 1oz of nutramigen and another the worst of the choking episodes last night. I am either getting something changed with the doctors today or hes going to the emergency room tonight right before that time frame. I feel helpless calling his pediatrician since he has been seen 3 times in the last 2 weeks. Also I am fairly open minded to anything I think will help at this point.
Oct 05, 2010
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
It is possible that he has Delayed Gastric Emptying so during the day he just keeps getting fuller and fuller becaues he is not empyting fast enough? Add in the fact that late afternoon/early evening is the typical "witching hours" for young babies. You might have a combo of the two going on.

In my opinion.. your Prevacid does seems low..

Regarding Zantac and Prevacid... I would not quit Zantac cold turkey. I would give the Zantac in the morning and Prevacid at night, unless he does have delayed emptying then I would do Prevacid in the morning and Zantac at night because Prevacid needs to be given on an empty stomach with a feeding 30 minutes later.

Oct 05, 2010
tnqangel
ok I talked to the pediatrician again and she wants us doing the prevacid instead of the zantac. Also she said to give it with a meal. So I am confused on if he is suppose to wait before eating or eat right after. They said that Nov.1 was the earliest she could get me in for the GI appointment but they gave me the number up there and I called and got the appointment switched to this Thursday with a nurse practitioner at there out reach office. I would rather see the doctor but figured if I can get a start in the office then maybe I can get some quicker appointments. I also brought up the concern about aspiration and asthma to the pediatrician and she does not want me seeing a pulmo until after the GI. I also learned that one of the doctors that I saw at the hospital was a pediatric GI. He was one of the ones who came in and saw him frequently but I was unaware at the time that he was GI specialist. He is the one they set the GI appointment with. I decided I am going to take him to the chiropractor today. Even if it doesn't help any with the reflux, it may make him more comfortable in other ways and even minor comfort is comfort. As far as the dose on the prevacid, I know she was confused on how much to give him and had to look it up. I will have to ask her to double check it or talk to the GI's nurse about it on Thursday. Does anyone know if I can call and get his medical records or do I have to go in person. I live about an hour and a half from the hospital he was staying at? I will look up more info on the delayed gastric emptying and ask them about it Thursday. Hopefully we can get something figured out soon. I am going to go crazy if we don't. I have 2 other young boys who desperately need more attention from mommy and it is so hard when I am afraid to lay their brother down for more than 5 minutes. The other two boys are 3 1/2 yrs and the younger is 14 months today. Sorry so many questions - my oldest was the complete opposite as a baby he did the projectile vomiting and lost a lot of weight. We switched him between several formulas and settled on a soy formula thickened with cereal. That helped the most with him but he never really quit throwing up until about 5-6 months when he started solids. They didn't tell us he had reflux until he was 2yrs old and we had to go to the emergency room because we thought he had something stuck in his throat because he kept waking up gagging, crying and grabbing at his throat. They told us then he had reflux but we thankfully haven't had any more problems since that night. The younger one did great, never had any problems with eating thankfully. Sorry so long, thanks for reading.
Oct 05, 2010
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
Go to Marci-kids.com to learn all that you can about reflux before your GI appointment. They have a calculator that shows you the dosage. Write down the questions you have so you do not forget in the moment. Also write down any patterns you have seen and video tape his choking episodes.

Regarding laying him down to care for the other boys..... Invest in a Baby Bjorn. You can carry him uprights, have your arms free and he will sleep like a rock.

As far as the medical records go, call first. They likely will have to scan and email you a form to sign or fax it to you or your husband at work if you do not have a fax machine. They will deliver them to the GI though.

Oct 06, 2010
kenneyhl
My son Levi is 13 weeks old. We figured out he has reflux @ 2 weeks. We have tried 4 different formuls (Currently Neocate) and he is taking Pepcid, Prevacid, Mylanta, Grip Water
my son is on gripe water, but i dont think its helping much. He also sees a chiropractor 2x a week. I have seen imporvements with that. I experimented 1 week to see if he really needed to to go the chiropractor and didnt take him... big mistake! He totally regressed and i went back apoligizing for messing up the ciropractors work! my sons chiropractor is very nice. Before he did anything, we sat down and talked for like 45 minutes about everything i have been through with my son and he even offered suggestions on other things (let me clarify that he is a osteopathic doctor, not just a chiropractor) He then explained to me why chiropractic care can sometimes help infants with reflux. Some babies are born with pinched nerves in their neck becuase the are squished towards the end of pregnancy. If you baby has a pinched nerve in the right spot, it can effect the stomach sphinsters. If the nerve to the stomach sphinster is pinched, it causes the sphinster to relax and stay open. All he does to my son is push on his neck with 1 finger. There is not cracking of backs or anything. We are normally in and out in less than 10 minutes. He did say that some babies dont respond to this treatment, and some respond instantly, while others it may take up to a month before you see any changes. I really didnt notice the changes untill i did my little expireiment to see if he really needed to go. the only reason i didnt want my son on Zantac was because the liquid version has a high alcohol content. But you can was the pharmacy to make a liquid version by opening up the zantac pill and they can. I didnt want my son to be on alot of medications, but you know what? if it will help him, you gotta do what you gotta do.
Oct 06, 2010
tnqangel
I keep trying to go to the website you recommended but it says its under construction. I have been looking up a lot of other information on reflux though. I am thinking about asking them for the pH test, has anyone had this done and how useful was it? Also I have been logging his sleep for the day and recorded several of his feedings to show them tomorrow. He does not sleep very much, my 14 month old sleeps more than he does. So far in the last 12 hours he has only slept a little under 4 hours. I know its because hes in pain - he wakes up screaming. Also today he has not been eating good at all. Usually he eats a lot but hes been refusing to eat more than an oz about every 2 hours today. He tries to eat then gets choked up and refuses to try again for a while. I have wasted so many bottles today because I keep having to "refresh" them because it takes so long for him to eat because of the choking and then he gets too tired and falls asleep only to wake 15-20 mins later. I am glad to hear a good experience with the chiropractor. I took him yesterday and he did good. Didn't act like it bothered him one bit, me on the other had I about freaked out because he was rougher than videos I watched online. He twisted his neck and that made me nervous. I am thinking about take him to a different chiropractor or asking this one not to do that again next time. Not sure if its helped any or not but figured I will try it for a while and see how it goes. Also I am having a hard time with the prevacid, since it has to be cold I am not sure how to give it to him with out upsetting his stomach. The last 3 days I just used the syringe and put it slowly in his mouth like with the zantac but he ends up spitting it up with in about 5 to 10 mins of me giving it too him. I think because its cold it is aggravating his stomach even more causing him to spit it up. Which is odd for him because he rarely ever spits up at all. We go in to see the GI's nurse tomorrow. I hope this can hopefully get things moving a bit faster. I can't hardly stand to see him in so much pain.
Oct 08, 2010
tnqangel
The appointment today with the GI nurse went way better than I could of asked for. She made some phone calls and got us in at the hospital to have an ultrasound done to rule out pyloric stenosis, which was followed by an upper GI series which came back good. Then we went on to the ENT and had the endoscopy done again and found that his throat is a lot more red than it was previously so they in no way doubt he has silent reflux and now up'ed his prevacid to 1.5mL of 3mg/mL 3 times a day. She also told me to put the medicine in the bottle cap to get him to take it and that worked great. The ENT ordered a sleep study as well and I am waiting on them to call and set up an appointment for that. The want to make sure that when he quits breathing that it is related to choking and not apnea. They are also wanting him to follow up with an OT to work on his feedings and hopefully reduce the amount of choking episodes. We are finally getting something done now so I am hopeful that we will start seeing improvements soon with the new medicine dosing, and we have the right follow ups in order with the GI, ENT, and soon to be the OT just to make sure everything continues to get better. Also, the ENT says she doesn't agree with the velopharyngeal diagnosis which is interesting since that is the one thing that I could not understand how it really related to him since he is not old enough to have any recognized speech problems and no visible problems with his palate or lip. So hopefully we are just dealing with the reflux and laryngomalacia. This is reassuring since most kids grow out of both of those but not so much with the velopharyngeal insufficiency. I am determined to make this as comfortable for him as possible until he can grow out of it. I finished totaling his sleep for 24 hours and he slept a little over 12 hours in the 24 hour period. He does better at night but hes still not sleeping what he should. My 14 month old sleeps 11 hours at night and has about another 2-3 hours of naps through out the day, totaling 13-14 hours a day still. My 3 1/2 yr old sleeps 12 hours at night - 8pm - 8am. Maybe I am just lucky they sleep that much. I am not sure but from I am used to I dont think the baby is sleeping enough.
Oct 12, 2010
tnqangel
He had a sleep study done yesterday, any ideas on how long it will take before I hear something back on it? They said it could be a few weeks, was wondering if anyone got there results back sooner than that.
Check with your
doctor first!