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Forum: GER- Reflux

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  #1  
June 7th, 2009, 02:09 PM
*Fiona*
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Posts: n/a
Hello ladies, (hi Missi!)

I'm stopping in after doing the Screening Quiz in the sticky and also after having just changed my DDs cot sheets because she was sick in her beddy byes

Kirsty is 4 months old. Has been EBF since birth. At 3 weeks she was diagnosed with colic. We started her on infacol medicine & after a few weeks this worked for the symptoms. Kirsty has always gone to bed around 7:45pm/8pm, always BFs and then goes down very easily.

Fast forward to about one month ago. She started waking up crying (quite distressed, no stirring just instant crying), within 1-2 hours of going to bed. I'm not able to calm her unless I pick her up. As soon as I pick her up, she's asleep on my shoulder again, so I lay her down. Sometimes she burps, but not too often.

The last few nights to a week, she has woekn around 3-4 times shortly after going to bed. Same thing, crying instantly, having to be picked up, then put down. Tonight, she did it again after approx 1.5 hrs of going to bed. I did my usual, tried calming her in the cot with my hand on her chest first, she turned her head & was sick. Not a whole lot but enough that I had to change her cot sheets.

A lot of people have asked me over the last month or so if I'm sure she hasn't been mis-diagnosed and it might be reflux. She has a few symptoms mentioned on other sites: hiccups, wet burps, arching back (all the colic symptoms), the last week or 2 she has this almost fake-sounding cough.

Sorry this is so long. Do you ladies think it is possible she could have reflux? I think I'm going to book a doctor's appointment for her but I hate to go feeling like I've either self-diagnosed or that I'm an over-reactive mum (she is my first baby). But at the same time, she can't take herself so I'm effectively her voice.
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  #2  
June 7th, 2009, 07:56 PM
Mom of 3 Preemie girls
Join Date: Jul 2008
Location: Home?!
Posts: 3,943
It could be laying flat in the worse position for them. Have you tried elevating it with a wedge under matress or blanket works too.

If you suspect Reflux. I would do one thing so they listen. Start tonight or tomorrow whenever you read this. Write down EVERYTHING! Food in (which BF'ing just times), naps, bowels, pees, mood, etc. When she has the hiccups, when she is screaming, what soothes her etc.
It sounds insane but a journal helps the doctors see that your serious and paying attention to your child and that there is a issue that needs solving and gives them a great idea of what is going on. I still have one for calleigh and crystal, my dh Chris thinks I am insane. Oh well I know what goes on and how to help and if not i call the GI.
Infantrefluxdisease.com is a great source of information etc. Some kids don't need meds just some diet modification from momma that is breastfeeding, some need some meds, others like my oldest need a buttload. Its scary and sucks but help is there you just have to be vigilant!
if you need anything please email me or pm anytime. I will help or listen.
I found with Crystal I couldn't have chocolate, caffiene, pasta, tacos etc. I basically ate cardboard and NONE gassy veggies. They never said anything about dairy which i think had they suggested it, it might have helped more. Calleigh was removed from Bf'ing because of milk and soy allergies and blood in her stool.


My experiences.... this will be long lol brace yourself I have 2 very different Gerd'lings

Crystal, 27months now was my first and by far the worse but I think more because I felt helpless and no one would listen.
From the beginning in the NICU she would spit up after her bottle (only eating 10-20ccs) and it would come out her nose and mouth. It was so acidy it burned a small spot where the nasal cannula was already irritating it. I called the nurses all the time, told the doctors etc. They played it off like I was crazy, shes a preemie its normal lalalala. So we came home at when she was 2weeks old and would literally scream 12-15 hours a day NON stop, arching back, unconsolable, everything. I took her to the doctors. She wasn't gaining properly and said it was failure to thrive and to feed her more and bring back. Well feeding her more only made the reflux worse. She had the hiccups about 15-20 hours a day, most her feeds would end up on me the couch everything, she would arch her back, scream in pain and NOTHING worked. Finally I got her in for a weight check when the other doctor was in and he sent her immediately for a Scanti Scan and placed her on Zantac. Although it didn't do much it stopped the crying for like 2 hours a day, she never slept more then 2 hours etc. She slept in everything but the crib, bouncy, swing whatever. At 3m old she still had the burn by her nose and everytime she pooped she would scream and be burned red instantly because it was pouring out both ends. Finally we get the scanti scan and it showed that she had over a 100 episodes reaching 3/4's way up her esophagus. It also showed her gastric dumping rate at 6% which low norm is 26%. So the food was just sitting there waiting to come back up and it did all over me daily!
She was exclusively pumped for so she had nothing but breastmilk the entire time. They finally sent me to a GI for her. She was placed on prevacid, reglan and axid. It was finally ok but still not great. She was either in my arms, the swing, the rocker anything up right never laying flat. Once she could sit up things got better during the day, night was still living hell. Once she could walk it was better. She was allergic to diary and soy (like calleigh) and was 11month as still eating cereal and potatoes only, we just didn't want to set off a episode. Finally they asked if we wanted to be in a clinical trial. Nexium was the pill and thank god she was one of the kids that got it and not the 'none' pill. It was our godsend. She could finally eat solids but still have to avoid heavy spices, pasta sauce etc. Finally at 18months she learned to sleep thru the night when we got her tubes placed and adenoids removed. The GERD was causing the fluids to build in her ear, perforating it all the time so it was antibotic and antibotic.
She still has the grossiest sour smelling breath, still hiccups like 5/6 times a day for 10-15m, she has nights where she will wake up screaming and arching her back and inconsolable.
She is by far better. She has had PH probes, endoscopes, scanti scans, ugi's etc. Ugi's are worthless tests in my honest opinion, unless there is a obstruction or birth defect like twisted bowel whatever, they show reflux but don't give anymore information. Scanti scan is by far the most useful test. it will tell you episodes, how far up etc.
Pediatric Gi's are the GERDlings godsend. They are knowledgeable and work so close with the parents (here at least) to make things ok. Most kids outgrow it at 9-12months but Crystal was the lucky few that never will. She will go thru periodic endoscopes and meds for the rest of her life
Calleigh is a spitter like her sister but we were lucky with my constant pushing when i noticed it in the NICU I kept saying its GERD. With NG tubes they have whats called "aspirates" basically its food that backs up in the tube after a meal and/or leftover in the stomach. I kept saying why wouldn't that be GERD finally one of the neonatalogists listened and did a ph probe and scan. Sure enough i was right so they placed her on prevacid right away. Thank god she came home a much happier baby at 7weeks old then her sister.
She still has the hiccups 10 times a day, spits up all over but shes not a screamer but 2hours or so day when its getting close to her next dose.
None of the medicines will help with spitting up it will just neutralize the spit so it doesn't burn.
Elevating the bed is key it helps and I found that tummy sleeping is the best for my two (which is why I have a angelcare monitor cause it makes me nervous but it helps so).

If you made it here your a trooper and good luck I hope its just baby playing games on you momma! I wouldn't wish this on my worst enemy. It gives you such a hopeless feeling seeing your child in pain and nothing you can do but hope it stops

PS we still have to use oval drops, gas drops, gripe water something like that. We are to start right on Oatmeal because of the harshness of rice to the belly of babies (especially preemie). Sometimes she gets a shot of maalox inbetween to "make it thru" to her next dose.
All the meds are adjusted by weight so if she has to go on medicine, when you notice a growth spurt, call get her in and get it up'd it saves a lot of screaming and pain for both you!

PS we still have to use oval drops, gas drops, gripe water something like that. We are to start right on Oatmeal because of the harshness of rice to the belly of babies (especially preemie). Sometimes she gets a shot of maalox inbetween to "make it thru" to her next dose.
All the meds are adjusted by weight so if she has to go on medicine, when you notice a growth spurt, call get her in and get it up'd it saves a lot of screaming and pain for both you!
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  #3  
June 7th, 2009, 11:53 PM
*Fiona*
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Thanks Missi, i really appreciate your reply.

Last night she was really settled after the spit up (I'm not sure if that episode would be classed as vomit or spit up?!). She slept fine until her feed at 1am, but it took me until 2:40 to resettle her, I don't think it's related though, she was just really awake and chatty!

Hiccups: She constantly had hiccups whilst in the womb, and after she was born I'd say she had them after most, if not all feeds. Then they settled down until about a month ago. She doesn't have them as much now, maybe about 2 or 3 times a day, somedays none though.

I do write down her feed times as I'm terrible with remembering when she last ate, so I have a record for the last week of May and for last week but not the week between as we were at my parents and it all went out the window It also has her bowel movements noted. And her daytime sleeps & nighttime feedings. I took note of all these things to see if what I did with her through the day had any effect on nighttime feedngs.

I don't know if you recall my threads in our DDC about routine and daytime sleeping? She has never been a good daytime sleeper. On the rare occasion (if we're in the car/pram) she will sleep for 2-3 hours, but typically it's around 30mins to an hour.

I did wonder about raising the cot matress, how much does it need to be raised in order to possibly help? Would a pillow under it be too much? I don't have a wedge of any sort & don't want to buy one if this isn't the solution. If however it is, then I definately will look for one. I'm going to call the doctor when the practice opens this morning, and see if I can get her in.

For the past 3 weeks I've stopped nursing with boppy through the day, we only use it for the first feed of the day & for bedtime & through the night. I've noticed the past week or 2 she really arches her back & gets fussy during feeds, I keep thinking she has wind so try to burp her - could it be that she is uncomfy or something? (sorry this is long!)
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  #4  
June 9th, 2009, 07:38 PM
Mom of 3 Preemie girls
Join Date: Jul 2008
Location: Home?!
Posts: 3,943
i saw on our board they diagnosed her with reflux. what med did they place her on?
Have you started the cereal again? She may just have been showing symptoms as they get more it pushes more up it may not be the cereal causing it, if that makes sense. Also our NICU and GI said to skip rice with Gerd'lings because its binding and harsh to there bellies. If they get bound up with poop, it makes the reflux worse. Because the bowels push on the stomach and force the acid upward. Crystal was notorious for it, bound up, reflux more then completely vomit everything for 2 days then be fine once she passed her bowels.
Just watch gassy foods in your diet, like broc, cauliflower, beans, pasta sauce etc. They may or may not effect the reflux but sometimes it does and its SUCH A PITA!

Dont buy a wedge we didn't for a long long time with Crystal. When she was in the crib it was easy to take a blanket and fold it up under the head of the crib. You just want to elevate it so her head is above her stomach so the acid can't basically sit in her throat.
You can use whatever, just roll it up and place under the mattress at the head. The ones they sell in the store aren't that high so we found towels, blanket worked better. Calleigh is in the bassinett and it has adjustable legs so I just took the two for the head of the bassinett and raise them one notch higher then the back legs. It has worked thus far, which is only a week since before she slept in the swing upright lol .
KMP and good luck sorry if i didn't answer everything its been a wicked few days with calleigh. Either her reflux is getting worse, shes teething or both arghhhhhh lots of screaming...
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  #5  
June 10th, 2009, 04:56 AM
*Fiona*
Guest
Posts: n/a
Quote from my post on the UK board:
Quote:
The rash: He doesn't know what it is so "it must be viral" but if it gets worse or isn't gone by the weekend I've to take her back next week (in other words, dunno what it is, but if it continues come and see someone else?)

The waking up soon after going to bed: He doesn't know what it is either, I asked if reflux may cause it and explained other possible reflux symptomsKirsty shows... it "might be" but reflux is very common in babies...

Ummm... ok... and so??

He asked me if i wanted to try infant gaviscon... wanted to? He's the doc so he should be recommending not asking me?! I asked what it was for (knowing full well), he said it's used to treat reflux, well duhh. He advised me to put the gaviscon in her bottle despite me saying she is EBF. His reply "oh well, you'll have to find another way to give it to her then, I don't know how you give it to a BF baby".

Just as well the packet has instructions on
The doctor was completely clueless. It was him I saw the first time I took Kirsty to the docs about colic (altho I didn't know it was the same doctor until I got in this week), and his reply then was "babies cry, it's what they do".

Anyway, I'm glad I stood my ground, I felt like I was telling him what was wrong with her & I didn't want it to be that way incase I'm wrong. But there are a few symptoms present which points towards it so I was happy to try the gaviscon, I used it for heartburn in my pregnancy so I knew it must be safe for her. She's had it the past 2 nights, only for her bedtime feed, and she hasn't woken up with the crying/sicking up symptoms, so I can only assume it's really helped! I haven;'t put her back on the rice, I'm going to hold off until 6 months if I can. It really didn't make any difference to her sleeping longer.

Last night she slept 8pm-2am, fed and went back down 1:40am-5am I really appreciate your input on this.

How is Calleigh doing today? Bless her little soul!
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  #6  
June 10th, 2009, 09:42 AM
Mom of 3 Preemie girls
Join Date: Jul 2008
Location: Home?!
Posts: 3,943
The best way to give reflux meds is on a empty stomach 30minutes before a meal. Pick her worse time of the day. Crystal my middle one is always the worse at night so I would give it to her like 1-2 hours before bed time and her bottle.

If they won't take it straight you can mix then with a ounce or so of BM if you have some pumped.

Calleigh is better today (KNOCK ON WOOD). She woke up at 230am which is so odd for her, and then slept till 11, ate and is back out. So growing pains maybe who knows she was SOOOOOOOOOOOOOOOOOOOOOOOOO cranky it wasn't funny.

Cereal never helps with sleeping longer, wifes tale, or I had 2 wierd kids cause they didn't sleep better or worse LOL

HOpefully she will keep up sleeping well again and this will work. When you notice she has a growth spurt you'll have to get the doseage adjusted.
I can't believe he asked that.... I was on nexium with my pregnancies and i only asked for it because I knew it worked so well for crystal LOL. I can't wait till calleigh is old enough to be on it, but she has to be like 10months which i hope they will go acutal not adjusted LOL
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  #7  
June 15th, 2009, 12:44 PM
*Fiona*
Guest
Posts: n/a
Well the Gaviscon works a treat, since she started it, there haven't been any bouts of this crying waking. The packet says to mix it with 15mls of water, which is approx or just over an ounce, I felt it was a lot of water to give her right as she was about to take her bedtime feed.

If she was FF or BM in a bottle-fed, it would go directly into her bottle without water mixing, so I tend to make it up with 5ml of BM and dropper feed it to her then BF her, same thing as putting it in a bottle?! It works so I'm happy that she is more settled and obviously less uncomfortable.

How is calleigh doing the last few days? Bless her little soul!
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