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need HELP re: infant reflux

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LoveMySMT09
<3mySMT.AJT

Member since 1/09

2623 total posts

Name:
VT

need HELP re: infant reflux

im honestly about to lose it.

DS is almost 5 months and his reflux is AWFUL. He was put on Prevacid and Pepcid, along with mylanta. His symptoms have never improved yet his Ped Gastro keeps simply upping the dosages, telling us it should work.

I feel like im neglecting this poor kid, like im not doing enough for him. He's up all night coughing, choking, wheezing. No one sleeps. He coughs and chokes after every single bottle, half the time it causes him to throw the bottle up. Weight gain has been a huge issue as he was also diagnosed with a milk protein intolerance at 10 weeks. He failed to gain weight from 6-10 weeks and dropped from 50th % down to 10th %.

Ive tried to call other gastros for a consult but everyone is booked, earliest available appt is end of AUGUST and our current guy refuses to see him again until SEPTEMBER Chat Icon


ive brought him to his Ped and an Urgent care 2 times over the past 2 months because we thought he was fighting a bad URI but it turns out it's just his reflux worsening. What do I do?? I feel like I have to let him suffer because no one can or will see him. Instead his gastro just keeps upping meds that aren't helping. i cant cry over this anymore Chat Icon Chat Icon Chat Icon

2x over the past week DH and i have contemplated calling 911 in the middle of the night because DH gets into such bad coughing fits that he turns purple.

are their any other meds I should request we try? the nurse at the office today suggested we try gaviscon (even though we've already done mylanta). I just feel like no one is taking us seriously, like we're being brushed off. Yet at the same time, no other doctors have appts in the near future!

Chat Icon just venting, but any BHDT advice would be greatly appreciated

Posted 7/2/12 11:54 AM
 
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NervousNell
Just another chapter in life..

Member since 11/09

54323 total posts

Name:
..being a mommy and being a wife!

Re: need HELP re: infant reflux

DD didnt' have it NEARLY as bad as you are describing- but Axid worked well for her.
Have they tried that one on your son?

Posted 7/2/12 12:08 PM
 

NewLeaf2012
LIF Adult

Member since 1/11

2741 total posts

Name:
....

Re: need HELP re: infant reflux

First, find a new gastro!!! Is he formula fed? What formula are you using? That can make a huge difference. My son had a severe milk protein allergy and reflux. He eventually ended up on Elecare with cereal to thicken it up and Zantac. I got my pedi to call the GI and we got in within a few days. I use Dr Weinstein at LIJ Childrens Hospital. She has 2 offices and we go to the one in Commack with no problem..

Posted 7/2/12 12:09 PM
 

LoveMySMT09
<3mySMT.AJT

Member since 1/09

2623 total posts

Name:
VT

Re: need HELP re: infant reflux

DS is on Neocate for milk protein allergy.

I should have mentioned we're now in Danbury CT (but it's times like this that I wish I was still on LI!!!!)

Im trying to find a new Ped Gastro but everyone is booked!!!! Chat Icon

Im honestly contemplating taking him to the ER just so he can be seen! His lungs are so junky at this point that I'm worried about aspiration pneumonia. It's been 2+ months that it's just been out of control. Chat Icon

Posted 7/2/12 12:12 PM
 

LoveMySMT09
<3mySMT.AJT

Member since 1/09

2623 total posts

Name:
VT

Re: need HELP re: infant reflux

Posted by NervousNell

DD didnt' have it NEARLY as bad as you are describing- but Axid worked well for her.
Have they tried that one on your son?




I asked about Axid but was told it's basically the same as Prevacid (not sure if that's true or not...)

Posted 7/2/12 12:13 PM
 

NewLeaf2012
LIF Adult

Member since 1/11

2741 total posts

Name:
....

Re: need HELP re: infant reflux

DS did really good with the Zantac, but at 6 months he refused to take it. It tastes horrible, so we switched to Axid. Didn't work as well. I would ask your pedi for Zantac. The GI didn't prescribe his meds, the pedi did... She just confirmed everything that he was doing. DS barely eats now at 2.5 years old, so the GI did an endoscopy to see if the reflux damaged anything. It came back clear..
Nexium is good too..

Posted 7/2/12 12:29 PM
 

aliwnec10
mom of 3 boys

Member since 4/06

11401 total posts

Name:
Ali

Re: need HELP re: infant reflux

Posted by LoveMySMT09

Posted by NervousNell

DD didnt' have it NEARLY as bad as you are describing- but Axid worked well for her.
Have they tried that one on your son?




I asked about Axid but was told it's basically the same as Prevacid (not sure if that's true or not...)




so NOT true. Axid is the same as Zantac. There on tier 1 so to speak (the most gentle, which help decrease acid in stomach).

Prevacid is in the same class as Prilosec & Nexium. These are PPI's which help block the stomach from producing the acid.

So you want to stay in the same class since it sounds like your son needs it. Try Prilosec or Nexium next.

Message edited 7/2/2012 3:41:29 PM.

Posted 7/2/12 3:39 PM
 

aliwnec10
mom of 3 boys

Member since 4/06

11401 total posts

Name:
Ali

Re: need HELP re: infant reflux

so his stool came back positive with blood? is that how you found out about the intolerance?

my son was almost as bad as yours. I was about to lose it. Luckily prevacid seems to have helped him a lot.

Did he ever have an upper GI (barium test)?

We tried 5 different formulas. They thought my son had a milk intolerance as well. He actually did WORSE on alimentum and nutramigen. The thing that changed him was Similac Sensitive for gas and fussiness. Once he started on that and prevacid... it was that combo that worked.

ETA: oh and i should also add that we had to wait over a month for an appt with the GI and i was about to go out of my mind. WHen i told my pediatrician, she called and got us an appointment for the next week. Try that. Chat Icon

Message edited 7/2/2012 3:46:18 PM.

Posted 7/2/12 3:44 PM
 

LoveMySMT09
<3mySMT.AJT

Member since 1/09

2623 total posts

Name:
VT

Re: need HELP re: infant reflux

Posted by aliwnec10

so his stool came back positive with blood? is that how you found out about the intolerance?

my son was almost as bad as yours. I was about to lose it. Luckily prevacid seems to have helped him a lot.

Did he ever have an upper GI (barium test)?

We tried 5 different formulas. They thought my son had a milk intolerance as well. He actually did WORSE on alimentum and nutramigen. The thing that changed him was Similac Sensitive for gas and fussiness. Once he started on that and prevacid... it was that combo that worked.

ETA: oh and i should also add that we had to wait over a month for an appt with the GI and i was about to go out of my mind. WHen i told my pediatrician, she called and got us an appointment for the next week. Try that. Chat Icon



he was positive for blood and mucous in his stool. he was on good start, then alimentum which he did well on for about 10 days, then did a 180, so they switched to neocate which he's actually done well on after he got used to the taste. got him back up to a steady 25th % for weight. but now that he's vomiting many of his feedings his weight is iffy again. he only gained 1lbs the last 5 weeks, Ped said it should have been a bit more.

he hasnt had any testing, the Ped just sent up to the Gastro due to symptoms of reflux and bad diarrhea (up to 15x/day). i just refilled his prevacid, but asked for only a 2 week supply at a time. I can across a few places that said that prevacid loses it's potency after that time and since im grabbing at straws at this point i'll try anything!!!

i actually had the PA at the ped's office call the Gastro today he they basically said "we saw them a month ago, and are sched to see them in sept. what more can we do?" Chat Icon

Posted 7/2/12 4:08 PM
 

cutie
LIF Adult

Member since 2/06

1893 total posts

Name:
Janine

Re: need HELP re: infant reflux

I would try to have your ped call another gastro for a second opinion and have them try to get you in sooner.

Also, I wouldn't say Axid and Zantac are the same (even though they may be in the same class) since Zantac made DD MUCH worse and Axid worked like a charm. I think part of the problem is that a lot of it is trial and error to see what works best for each child.

That being said, listen to your mommy voice! Keep calling the ped and don't take no for an answer until it seems to be getting better. Don't worry about annoying them, it's their job - and your child is in severe discomfort!

Wish I had more advice Chat Icon

Posted 7/2/12 7:27 PM
 

maymama
my little loves

Member since 8/08

18453 total posts

Name:

Re: need HELP re: infant reflux

i spoke with Ivy today ... she asked a few questions...

have symptoms increased since you started solids?

does he get worse after eating (including bottles)?

could very well be an immature digestive system, combination of allergies to surroundings and food, seasons etc.

she said that peds/gastros/allergists did nothing for charley. Pulmonoligist put him in daily nebulizer treatments (pulmicort and xopenex) and it gotten progressively better since 4 months (now 9 months)

could he be allergic to the cats?

Posted 7/2/12 7:49 PM
 

DDB336
LIF Toddler

Member since 8/05

421 total posts

Name:
Diana

Re: need HELP re: infant reflux

I live in Wilton, CT and went through something similar with my DS when he was little, he is now 2.5 years old. He has a milk protein allergy and was put on Elecare and Zantac. We saw a doctor that was with Children's & Womens's phyisican of Westchester. The doctor that orginally helped us is not with them anymore, but we did see Dr. Glassman a few months ago and really liked. He is located in Norwalk, not sure if that is too far for you. They have other Pediatric Gastroenterologist have have an office in Danbury and maybe able to get you in quickly.

My DS was started coughing around 3.5 months old and the coughing continued for months. We finally saw a
Pediatric Pulmonologist, Dr.Diana Lowenthal who is also associated with the same center. She is great, he was put on Flovent for baby asthma, but we didn't know the cause. We went to westchester to see her, but she also sees patients in Norwalk once a month.

Here is the link to Maria Fareri Children's Hospital at Westchester Medical Center for a list of doctors.

http://www.westchestermedicalcenter.com/home_mfch.cfm?id=65&fr=true

Please let me know if there is any other information I can give you. I know how hard it is to see you little one suffer. Good Luck.

Posted 7/2/12 8:26 PM
 

BaseballWidow
*****

Member since 8/08

6657 total posts

Name:

Re: need HELP re: infant reflux

We needed Elecare and Prilosec (Axid no longer cut it). I am sorry but you have to find a new GI and harass your Ped if need be. You said you are in CT right? I'd take a trip to Yale and go to the ER. What about seeing an allergist or pulmonologist in the meantime? Might be able to help w/ all the pulmonary issues. You need to get the baby some sort of help/relief.
Chat Icon Chat Icon Chat Icon

Posted 7/2/12 11:30 PM
 

aliwnec10
mom of 3 boys

Member since 4/06

11401 total posts

Name:
Ali

Re: need HELP re: infant reflux

Posted by LoveMySMT09
i just refilled his prevacid, but asked for only a 2 week supply at a time. I can across a few places that said that prevacid loses it's potency after that time and since im grabbing at straws at this point i'll try anything!!!



YES! I don't know why i didn't mention it before. But yes. I take it he's on the compound form correct? The compound forms can be very unstable after a certain point. My son is on prilosec compound and we get it refilled every 8-10 days. After that point, i can see his reflux symptoms start to flare up.

Also when are you giving it? For my son (5 months old), he wakes up at 5:30am. He gets the medicine right away and we wait the full 30 minutes before he gets a bottle. In the afternoon, we wait an hour and a half to 2 hours after his last bottle to give him the medicine. Sometimes if you give it too soon and it's not on an empty stomach, it can cause issues (diarrhea).

Posted 7/3/12 6:56 AM
 

aliwnec10
mom of 3 boys

Member since 4/06

11401 total posts

Name:
Ali

Re: need HELP re: infant reflux

Posted by LoveMySMT09

i actually had the PA at the ped's office call the Gastro today he they basically said "we saw them a month ago, and are sched to see them in sept. what more can we do?" Chat Icon



That right there- not good enough. You need to tell the PA to push harder than that and say you need to get in asap. That's like she/he barely even tried. Chat Icon Chat Icon Chat Icon Chat Icon Chat Icon

Posted 7/3/12 6:57 AM
 

LoveMySMT09
<3mySMT.AJT

Member since 1/09

2623 total posts

Name:
VT

Re: need HELP re: infant reflux

Posted by DDB336

I live in Wilton, CT and went through something similar with my DS when he was little, he is now 2.5 years old. He has a milk protein allergy and was put on Elecare and Zantac. We saw a doctor that was with Children's & Womens's phyisican of Westchester. The doctor that orginally helped us is not with them anymore, but we did see Dr. Glassman a few months ago and really liked. He is located in Norwalk, not sure if that is too far for you. They have other Pediatric Gastroenterologist have have an office in Danbury and maybe able to get you in quickly.

My DS was started coughing around 3.5 months old and the coughing continued for months. We finally saw a
Pediatric Pulmonologist, Dr.Diana Lowenthal who is also associated with the same center. She is great, he was put on Flovent for baby asthma, but we didn't know the cause. We went to westchester to see her, but she also sees patients in Norwalk once a month.

Here is the link to Maria Fareri Children's Hospital at Westchester Medical Center for a list of doctors.

http://www.westchestermedicalcenter.com/home_mfch.cfm?id=65&fr=true

Please let me know if there is any other information I can give you. I know how hard it is to see you little one suffer. Good Luck.



Dr Glassman is his Gastro! Loved him at first, and saw him again about a month ago. They're the ones who don't want to see him again until his next sched appt in September! Im going to give the meds 1 more week and if he's not MUCH better I will demand that he be seen again! I called another group in Danbury (on Sandpit?) and they said nothing available until October. Chat Icon Im going to look into the Ped Pulm -- thanks so much! Chat Icon

Posted 7/3/12 12:01 PM
 

LoveMySMT09
<3mySMT.AJT

Member since 1/09

2623 total posts

Name:
VT

Re: need HELP re: infant reflux

Posted by aliwnec10

Posted by LoveMySMT09
i just refilled his prevacid, but asked for only a 2 week supply at a time. I can across a few places that said that prevacid loses it's potency after that time and since im grabbing at straws at this point i'll try anything!!!



YES! I don't know why i didn't mention it before. But yes. I take it he's on the compound form correct? The compound forms can be very unstable after a certain point. My son is on prilosec compound and we get it refilled every 8-10 days. After that point, i can see his reflux symptoms start to flare up.

Also when are you giving it? For my son (5 months old), he wakes up at 5:30am. He gets the medicine right away and we wait the full 30 minutes before he gets a bottle. In the afternoon, we wait an hour and a half to 2 hours after his last bottle to give him the medicine. Sometimes if you give it too soon and it's not on an empty stomach, it can cause issues (diarrhea).



Yes -- it's compounded. It was AWFUL when CVS did it, you could tell it wasnt right. We now have a compounding Pharm do it and they said that the way they do it, it IS stable for 30 days bc they use a stabilizer, but if it makes me feel better theyre find doing a 2 week supply. He gets the prevacid and pepcid twice daily, at the same time, at approx 630 am/pm. Usually before his bottle BUT his sched is still not set in stone yet. We tried mylanta right after every bottle like they suggested but it did nothing so we stopped.

Posted 7/3/12 12:06 PM
 

LoveMySMT09
<3mySMT.AJT

Member since 1/09

2623 total posts

Name:
VT

Re: need HELP re: infant reflux

Posted by BaseballWidow

We needed Elecare and Prilosec (Axid no longer cut it). I am sorry but you have to find a new GI and harass your Ped if need be. You said you are in CT right? I'd take a trip to Yale and go to the ER. What about seeing an allergist or pulmonologist in the meantime? Might be able to help w/ all the pulmonary issues. You need to get the baby some sort of help/relief.
Chat Icon Chat Icon Chat Icon



Our Ped just suggested two other Gastros out of Yale. Its over an hour from us but if I can get a sooner appt we'll go! Im just worried that If i take him to the ER theyll laugh at me for bring him due to reflux. Chat Icon

Posted 7/3/12 12:08 PM
 

LoveMySMT09
<3mySMT.AJT

Member since 1/09

2623 total posts

Name:
VT

Re: need HELP re: infant reflux

Posted by maymama

i spoke with Ivy today ... she asked a few questions...

have symptoms increased since you started solids?

does he get worse after eating (including bottles)?

could very well be an immature digestive system, combination of allergies to surroundings and food, seasons etc.

she said that peds/gastros/allergists did nothing for charley. Pulmonoligist put him in daily nebulizer treatments (pulmicort and xopenex) and it gotten progressively better since 4 months (now 9 months)

we started solids a couple weeks ago, and this has been bad for a couple months but seems to have flaired over the past few weeks. maybe it is partially the solids? gave him oatmeal for the first time last night and a couple hours later he woke from a dead sleep shreiking like never before with bad gas. took 30 mins to calm him down Chat Icon
pulmonologist is our next stop!

could he be allergic to the cats?

Posted 7/3/12 12:11 PM
 

LoveMySMT09
<3mySMT.AJT

Member since 1/09

2623 total posts

Name:
VT

Re: need HELP re: infant reflux

Sorry KP -- not sure why it didnt post my response.

We started solids a couple weeks ago and while its been bad for a few months, it has flared over the past couple of weeks. Im wondering now if the solids are making it worse! He's only getting a cereal and either veggie or fruit once daily, and it's not much because hes still trying to figure out the spoon.

last night we tried oatmeal for the first time and a couple hours later he had bad gas and seemed to be in a lot of pain (was screaming bloody murder, took a good 30 minutes to calm him).

it kills me because he's usually such a happy baby, but he's miserable when he gets the coughing fits and at night. i dont think its the cats because he's the same way at daycare (coughing, choking, wheezing, etc. worse right after a bottle and when he wakes up).

pulmonologist is our next step

Posted 7/3/12 12:16 PM
 

DDB336
LIF Toddler

Member since 8/05

421 total posts

Name:
Diana

Re: need HELP re: infant reflux

Posted by LoveMySMT09

Posted by DDB336

I live in Wilton, CT and went through something similar with my DS when he was little, he is now 2.5 years old. He has a milk protein allergy and was put on Elecare and Zantac. We saw a doctor that was with Children's & Womens's phyisican of Westchester. The doctor that orginally helped us is not with them anymore, but we did see Dr. Glassman a few months ago and really liked. He is located in Norwalk, not sure if that is too far for you. They have other Pediatric Gastroenterologist have have an office in Danbury and maybe able to get you in quickly.

My DS was started coughing around 3.5 months old and the coughing continued for months. We finally saw a
Pediatric Pulmonologist, Dr.Diana Lowenthal who is also associated with the same center. She is great, he was put on Flovent for baby asthma, but we didn't know the cause. We went to westchester to see her, but she also sees patients in Norwalk once a month.

Here is the link to Maria Fareri Children's Hospital at Westchester Medical Center for a list of doctors.

http://www.westchestermedicalcenter.com/home_mfch.cfm?id=65&fr=true

Please let me know if there is any other information I can give you. I know how hard it is to see you little one suffer. Good Luck.



Dr Glassman is his Gastro! Loved him at first, and saw him again about a month ago. They're the ones who don't want to see him again until his next sched appt in September! Im going to give the meds 1 more week and if he's not MUCH better I will demand that he be seen again! I called another group in Danbury (on Sandpit?) and they said nothing available until October. Chat Icon Im going to look into the Ped Pulm -- thanks so much! Chat Icon




I'm sorry that Dr. Glassman can't see you sooner. Hopefully the Ped Pulm helps. After my DS was put on Flovent it took about 2 -3 weeks for the coughing to go away and during the winters we keep him on it to prevent bad flare ups when he gets a cold. We us a spacer mask to give him the Flovent.

Posted 7/3/12 2:01 PM
 
 

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