Posted By Posting
Mar 02, 2010
natheen
Any suggestions
Hi, My baby is now 4 1/2 months and the problem started again. She was on omperazole and it working fine and now we refilled the bottle of medicine and after few days its not working. We are going to get a new bottle just in case the compound was not mixed properly. What else could it be? I can see my baby struggling to swallow the milk. Which medication did you give your baby at 4 months? This is very difficult. My baby is only 4 months so I have long way to go. :(
Mar 02, 2010
isobel'smamma
Sara, Mom to Isobel 10/01/08 Dx Silent reflux @ 6 wks. Prevacid 22.5mg split in 2 doses. Pepcid .5ml twice a day. Diagnostically confirmed milk protein, egg and cat allergy. Suspected corn, pea and squash allergy. Trialed Alimentum and Elecare without success, currently on Isomil Advance RTF with moderate success. Barium Swallow and UGI 3/08 Pondering a ph probe and endoscopy.
Natheen-

please push your new ped to send you to a pediatric GI. Spend what time you can in the Reading Room here so that you have a little more background info, a jumping off point for questions to ask the GI. Write down your questions so you don't forget when you get there.

Clearly the med isn't working. Tell your ped and ask to try something different. Ask what you can give your baby to ease her pain. We had a feeding issue too and I finally sat in the doctor's waiting room and demanded that he or a nurse watch my LO try to feed. Sometimes you have to be more assertive with the docs.

I know you are confused and frustrated. The best way to get through those feelings is by educating yourself. Read previous posts, go to the reading room, search out other online resources as well. Everyone here can only offer their own experience and their suggestions based on that experience.

Ask the doctor about what to do for constipation, what to do for pain and what the signs of dehydration are. Demand to see a specialist. Read all you can and take notes. Good luck Momma.
Mar 02, 2010
natheen
Your right, my daughter should be seen by a pediatric GI. But the pedi is only looking at my daughter's weight and is not referring her because she's at a average weight. The specialist won't see my daughter without a referral. I don't know what to do. The new pedi I went to lives far away. Maybe I should take my daughter into emergency (hospital) one day and see if they can do something like refer my daughter to a specialist. I am getting the same answers "keep trying to feed your baby", easier said then done. But I will search for a good pedi until my daughter gets the right help, the right medicine and the right formula.
Mar 02, 2010
isobel'smamma
Sara, Mom to Isobel 10/01/08 Dx Silent reflux @ 6 wks. Prevacid 22.5mg split in 2 doses. Pepcid .5ml twice a day. Diagnostically confirmed milk protein, egg and cat allergy. Suspected corn, pea and squash allergy. Trialed Alimentum and Elecare without success, currently on Isomil Advance RTF with moderate success. Barium Swallow and UGI 3/08 Pondering a ph probe and endoscopy.
I also had to resort to video taping several feedings and reflux episodes before being taken seriously. It also helped that I kept a log of everything - med times and amounts, food times and amounts, the number of wet diapers and times of bowel movements. I also photographed BMs to demonstrate the symptoms of allergy to the ped. If you have to call everyday to report that your baby is only drinking X amount and seems to be in pain then that's what you do. Eventually they will refer you up the chain (if only to get rid of you).
Mar 02, 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
Tell the Ped you will fire her/him if you don't get the referral put through. Not to be blunt, but a Ped is a Ped NOT a GI...you need to be seen by a GI so they can dose the meds properly and deal with all the GI issues that come with Reflux.

You are getting the Prilosec compounded, right??? It is very hard to make it properly. We found only ONE pharmacy in our area who could make it right. We were only using this med because we HAD to have a PPI in liquid form. There were NO other options for us. It had to fit into Jedd's feeding tube and we tried ALL the other meds and they all clogged it.

IMHO, this is not the best choice for a PPI for a child who will take meds by mouth. I know many Moms here who have success with Prevacaid, I'd try that and see if the results were better. You can use the solutabs. That way, you don't have to deal with a med going "bad" or not being mad properly.

I personally wouldn't go to the E.R. It would just clog up the system for others who need to be there for an emergency. There really isn't anything they are going to do but tell you to see your Ped for the referral. You would also have to wait a really long time and be exposed to all those germy people.

Our Ped really hates E.R.s unless you really really have to go to them. They are just filled with germy infested people....LOL :-) Your chances of catching something are really high. If it can wait, we don't go. Ever...LOL

Mar 02, 2010
natheen
your right I am going to push for a pedi GI. There is a hospital specially for children and is less crowded during the night. I will try to avoid taking my daughter there unless she is showing signs of dehyrdation or is in a lot of pain.
Mar 02, 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
What area are you in if you don't mind me asking?? We have tons of members here and chances are, one of us can give you a referral to a good Ped or a GI practice. I'm in VA near the coast.
Mar 02, 2010
natheen
I'm in Toronto, Canada.
Mar 02, 2010
natheen
Thanks for all your help.
Mar 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
Canada, that totally explains why you are having issues going to a GI....hhhmmmmm. I don't think among all the GERD people I know through reflux sites that I know anyone in that province. I'll ask around though and get back to this post.

Since you are in Canada, you may actually get somewhere by going to the E.R.

Just thinking out loud here.....LOL

I will try to find someone for you to get a hold of, not sure though.

Mar 03, 2010
natheen
Thanks
Mar 03, 2010
michelle&aurora
Aurora born March 17, 2007
3 years, 8 months old
Weighs 25.8 lbs
8 lbs 11 oz at birth.
Recovered Chronic Projectile Vomiter
Prevacid Free since September 08
Egg allergy diagnosed Jan 26/09
Has a Pectus Excavatum
Has an Epipen
Natheen, I am in Nova Scotia, so I feel your pain on needing referrals for everything. The fact of the matter is, you HAVE to nip this in the bud. If she's having difficulty feeding now, until she gets the proper treatment, it will only get worse. TRUST ME! Is her doctor a GP, or does she see a Pediatrician? Here in Nova Scotia, the family doctor (GP) will generally NOT refer to specialists until the child sees a Pediatrician. My first suggestion, if you are only seeing a family doctor, is to go there and ask for a referral to a pediatrician. Then request the GI referral from the pediatrician. You MUST emphasize the difficult feeding, the pain, and your frustration and exhaustion. A "GOOD" doctor will recognize that GERD is a family issue. My next suggestion is to track EVERYTHING, especially her intake, when you start the feeding, when it ends, how often you are feeding her, etc. If at all possible, videotape her feeding efforts and any pain episodes and bring this with you to the pediatrician. It may take some time to get in to the GI specialist, so in the meantime, try to remember that your baby feels your stress and worry. If it becomes unbearable and overwhelming for you, and you are genuinely concerned with her intake and her pain, then absolutely take her to the ER. At the very least, you will find some comfort in knowing she's been checked out, and at the most, they should be able to either put in a referral to GI, OR at least note in her ER visit report that mum has concerns about feeding and pain, and that might get the ball rolling. Your baby is young, so they should be able to put you in a room just for babies, separate from older children. I have been so desperate at times when my little baby was vomiting and refusing to eat, that I took her to the ER more than once. They could see how tired and scared I was. Even though my baby hadn't lost weight, her gain was slowing down and because she wasn't feeding very well, they admitted us. Truthfully, we didn't get anywhere with that other than a prescription for prevacid...it took such a long time to get into a pediatrician, who then referred us to GI...like, MONTHS, so my BEST advice to you is to keep looking for a family doctor and pediatrician who will listen to you, and demand when what you want for your child. I've changed family doctors and Pediatricians a few times to find the best care. It's not easy...try and remember to take care of yourself too. You are your baby's best advocate. GOOD LUCK!
Mar 03, 2010
natheen
Her doctor is a pediatrician. Yes, its very difficult. Thank goodness I've got my baby to this weight, but not sure if she's going to gain much weight any more. How did you guys overcome all this? Does it get easier? How do u do other stuff in life while taking care of a baby with reflux? How about going on vacation? I am scared to take my baby out for more than 3-4 hours.
Mar 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
It's a long hard road, I'm not going to lie to you. You will find that you are STRONGER than you ever imagine you could ever be, most of the Mothers here will tell you that. We did and so can you, I promise.

It does get easier....with time. I always like to say that TIME is a gerdlings friend. AS time passes it gets easier. Getting the right med is just about even. That's why we are saying to get to a GI. They can dose the meds soo much better.

We did vacation and even air travel complete with tube feeding supplies and medical pump equipment. It can be done. It's hard but possible. The one thing my DH and I resolved to do was.....to try and make life as normal as possible. I know that's easier said than done.

We have quite literally tube fed out son EVERYWHERE.....it didn't stop us from doing anything we wanted to do. We didn't want GERD to defeat us. It was already taking soo much away from us anyways.

I will tell you that I have been just about everywhere covered in puke. I got my hair cut while covered in puke, I was quite a sight but, I needed my hair cut and Jedd had puked all over me. No change of clothes. We had gotten sooo good at hearing it coming and catching it that we had stopped bringing along changes of clothes for us, the parents.

There were times when we would bring at least 4 bath towels and at least 2 changes of clothes for us and 4 or more for the baby. And that was just a trip to the store!!!! LOL We can look back now and honestly laugh at ourselves. During that time we decided that we could either laugh at ourselves or we could constantly cry, it was that horrible.

For us the getting better part came with the right dose of a PPI for GERD and a motilty med to help Jedd's tummy to move properly. Once we got that combo, life was much better. It took us about 2 full years to see long stretches of NO vomit. Before that we would see multiple many tons of puke every single day. We are talking covering a beach towel types of puke. He always smelled like puke, there was no getting around it.

Jedd's one of those kids that got it pretty severe though.

The only concern I would have with your LO is the not eating part. I'd start keeping a long like Michelle does with Rory. We did that with Jedd as well. These logs are worth their weight in gold. It just may help you get to see a GI faster as well.

Mar 03, 2010
natheen
Oh I am sorry you had to go through this. You seem like a very strong person, I look up to you and wish I can be the same. Everynight I cry myself to sleep. I hate seeing my baby in pain. I feel like a weak person. At what age did you start you baby on tube feeding? Was it because he totally refused to drink the milk? Is Jedd your only child? I can't think of having another child, I don't know how I would care for two babies and afraid my 2nd child will also get GERD. Did you have to stay home and care for your baby, or were you able to go to work? I don;t know how I'm going to return to work
Mar 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
Oh sweetie, don't sell yourself short. There were many many nights I cried myself to sleep, cried myself through a shower...and just about cried myself through the day......it was a long and hard road.

I think for me, one day I was on the phone with the GIs nurse. I was practically yelling at her and calling her all sorts of names in the book, basically NOT being my normal self. I stopped and apologized. She then gave me the BEST piece of advice I have ever been given.

She told me, Don't ever ever EVER apologize for being the BEST advocate for your son as you can be. Ever.

She could hear him screaming in the background and to top it off, we had a horrid GI who told me GERD was a laundry issue and one day my son would magically eat. He was eating nothing at that point and everything was going in his tube.

His tube was originally placed for his heart defect. His hole (in his heart) was so big he had no energy to breath and sustain life let alone have the energy to eat. He barely made it to 9 weeks when we had a tube placed down his nose and into his tummy. After his heart repair at 6 months we begged our horrid GI to refer us to surgery for a G tube to be place IN his tummy. He wouldn't do it.

We got refered by our Ped to a rehabilitation clinic that sent us for a 2nd opinion at a different GI in the same practice. He quickly adjusted Jedd's meds, put him on a motility med and sent the referal out for a G tube to be surgically placed. He was basically the best thing since sliced bread!! I literally LOVE that man!!!!!!

SSHHHH don't tell my husband...LOL He knows this though...LOL

I worked full time teaching K-5 until Jedd was 11 months old. The month prior to that he had an eval for early intervention to start teaching him to eat orally. It was VERY evident that I would have to stay at home if Jedd was ever going to eat orally again.

Oh and by the time the tube was placed in his nose Jedd was taking a measly 10 ounce per day and losing weight rapidly. An intervention of some type was needed desperately. He was wasting away and if we had continued, he would have died, sad to say. He weighed around 7.5lbs at that time. AT 6 months old he weighed an even 12 lbs. The lowest weight they wanted for heart surgery. At one years old he was around 19.5 lbs. Maybe a tad less. By 2 he was around....If I am remembering right about....25lbs?? Now he is 3 years old and weighs about 32 lbs.

At around age 2 Jedd was about the 25%tile...at 2.5 years old he has hovered around the 50%tile. This is where he stands today.

I will tell you, I can't stress enough about those food logs. I logged everything from the time he was a newborn and wouldn't eat and was undiagnosed. I knew deep down something was wrong. Little did I know what was in store for us. But I KNEW something was wrong.

It lets us know he needed more than the average amount of cals to slowly gain. Work with a dietitian if you can. They contain LOADS of information.

Mar 04, 2010
natheen
Oh my, your son is such a trooper, amazing boy. I got to be strong for my baby. She is only 5 months so I have a long way to go. Does Reflux ever go away? Do they eventually out grow it or is something they have to cope and deal with forever.
Mar 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
For some kids, yes reflux does go away. For others, it's there to stay.

We have done med free trials with Jedd several times over the last 3 years. Recently we did about 45 days off of meds. His longest to date ever.

He did good for around 30 days and then we started seeing milk issues creep in. Around day 40, they were increasing and by day 45 we were back to gagging, vomiting and food refusal. :-(

We put him back on his med. He has been back on them for about 1.5 weeks now and is doing better already. Today was the first day I haven't had a huge fight to get him to eat.

This will be our last time trying him off meds. We won't try again until he is in kindergarten. It's not worth it.

We have been able to move him to a lower class of meds though. He used to take a PPI and we have him on an H2Blocker now. He has been on that for around a year. We transitioned him slowly and he's done well. We are happy with that after this last trial. It's a great accomplishment for all he's been through.

Mar 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
I meant MILD issues not milk issues. Jedd has no issues with milk...stupid typing fingers....LOL :-)~
Mar 04, 2010
natheen
I wish reflux went away for all babies, but i guess it doesn't work that way. Oh that's really good that he only has mild issues. Hopefully he is off med soon.
Mar 04, 2010
isobel'smamma
Sara, Mom to Isobel 10/01/08 Dx Silent reflux @ 6 wks. Prevacid 22.5mg split in 2 doses. Pepcid .5ml twice a day. Diagnostically confirmed milk protein, egg and cat allergy. Suspected corn, pea and squash allergy. Trialed Alimentum and Elecare without success, currently on Isomil Advance RTF with moderate success. Barium Swallow and UGI 3/08 Pondering a ph probe and endoscopy.
We didn't have it nearly as bad as some. My girl is/was? a silent refluxer - no puking but we could hear it going up and down over and over, the poor thing. I used to keep hoping to reach every 'milestone' - the "when they're 6 months it's better" " when they sit alone it's better" "when they get to be a year it's better".... and it never happened. Isobel is 17 months anddoing well on dairy (yay!) and we are 7 days in to our second attempt at a med ween. So far, so good. I'm afraid to really believe this could be it. (Plus I know it could flare with more teeth or just for no logical reason at all.)

I guess the bottom line is that it's different for every kid. I know several kids around my girl's age who had reflux - some DID get better at 6 months, or when they sat alone or at 9 months.

I would love for this to be it for us. It's been a long time of careful feeds and being sure not to make her giggle too much. Having to remind family not to hold her upside down (she just ate 15 minutes ago) thank-you-very-much. I read jed's story and know that I'm a lucky momma and we had it easy. It's all in the perspective, you know?
Mar 04, 2010
natheen
Mine daughter did not have too much spit ups and hardly any vomits. In a day if she drank about 20 oz, about 2-3 oz would be spit up. I was so obessed with her feeding that I didn't take care of myself or the house (my husband was a big help). There were some days of forcing and other days where she was willing to drink, I was able to get my daughter to a very good weight, around 50-75 percentile. But let me tell that some days it was NOT easy...I would literally look at the clock for the next feeding and some days (I guess the days the medicine worked), she would cry for milk and it was easy. The days she didn't want to drink, it was HELL for me, I could cry and cry, my husband would be upset seeing me. But I'm trying to stay stronger. So the food adversion was on and off. But still I was sooo under stressed, i'm even starting to loose hair :( I'm still under stress not knowing how each feed is going to be. It is very hard but after hearing encouraging words from the mothers, it gives me a boost. Yea a lot of my family members are scared to hold her because she might spit up any minute and most of the times she's cranky because of the pain. I read the required amount of milk for a 5 month old and that gets me so mood out because my daughter is not anywhere near that amount. Oh well, long as she is thriving and is drinking as much as possible. Did anyone of you guys leave your baby at the daycare or in the care of someone else? at what age? and were they able to care for your baby with reflux. I'm going to have to face this problem in few months. I hope the day care can get some food into my daughter, I know it definitely won't be the same as me feeding her. I can't wait to start my daughter on solid and see if that makes a difference, also can't wait for her to sit up. I should be enjoying every moment instead of wishing for the days to go by faster :(
Mar 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
This will be fast getting ready to log off..
Don't ever ever ever feel bad for wishing that time would go faster. It doesn't mean you are a bad Mother at all. ((HUGS))

On this side of things I can totally say, I didn't like the baby stage at all. I literally hated it, it was NO fun. I have come full circle to accept that it is just something I will probably never be able to experience.

But, going through what we went through, it helps me to reach out others and let them know, you will survive. There will be days you don't think you will. You will think you can't take another step you can't do another difficult feed....you just can't take it anymore.

But, you CAN and you WILL. And you will be a better Mother, Parent, Wife, Husband, HUMAN BEING for it.

It has taught me a compassion I never knew I could possess.

FWIW Jedd was a complex kid, he has multiple issues going on at the same time and all these things compiled together to make him a difficult case.

Take it one day at a time. My mantra that I used to say over and over and over again when we were at our worse was this:

This Too Shall Pass

Because in all truthfulness, one day you WILL wake up and things will be a tiny bit better. The next week, it will be even better. A few months down the road, even better. Before you know it, a year will have gone by and when you look back, you will realize how far you have come.

In the mean time, we are here and we understand. When noone else in real life understands we will. Because we have walked in your shoes and cried in that shower, we have had weeks of sleepless nights.......I could go on. We just flat out, understand.

The hardest thing for me, was not having someone in real life to HUG me when it was at it's worse. Family can, but I wanted someone else who was walking in my shoes to just hug me and tell me it would get better one day.

So, here we are, giving you virtual hugs, telling you that one day, it WILL get better. I and my son are living proof of that.

Mar 04, 2010
natheen
Oh that is so nicely put. I am so looking forward to that day when its much better until then I have all of you guys support. Truly appreciate it. Thank you so much. I got my daughter to drink 19 oz today...pheewww... I've got a lot of hope now, thanks...I know now things will get better, I just have to be there for my baby and make sure she's getting the best help.
Mar 06, 2010
natheen
It's been day 3 of the new medication nexium, so far no improvements, it actual got worse. I'm going to wait for another 2-3 days and hopefully I see improvements. I daughter is down to drinking 16-18 oz per day and that's all with forcing. She is crying when she see's the sight of the bottle.
Mar 06, 2010
isobel'smamma
Sara, Mom to Isobel 10/01/08 Dx Silent reflux @ 6 wks. Prevacid 22.5mg split in 2 doses. Pepcid .5ml twice a day. Diagnostically confirmed milk protein, egg and cat allergy. Suspected corn, pea and squash allergy. Trialed Alimentum and Elecare without success, currently on Isomil Advance RTF with moderate success. Barium Swallow and UGI 3/08 Pondering a ph probe and endoscopy.
Have you tried having someone else feed her?
Mar 06, 2010
natheen
It's me and my husband that feed her. We had my husband's sister try few times and no luck.
Mar 07, 2010
natheen
My daughter drank only 9 oz of milk yesterday, we got scared and took my daughter to the ER and the doctor did even examine her properly and said she wasn't dehyrdated and that we can stop all the medication because she doesn't need it for her reflux, she'll just grow out of it and he told us to try giving the formulla again. I was so disappointed. It's been day 4 of nexium and still no improvement. I have an appointment with the pedi tomorrow.
Check with your
doctor first!