~*Mamas of Reflux Babies*~

[sezzolou]

SeezoLou what age is ur munchkin
I changed lo to buggy after asking doc at 3 months.
She said it was fine cos he is a big baby . He is much better
He hated his pram too.
Also I got a humidifier for his room and nasosal drops for his nose.
Both help a bit. Congestion.isn't gone but is better .
Xx

My lo is 14 weeks now. I have elevated his crib and pram mattress but he still cries an awful lot. I also now either take him out in the car seat on the pram base or the buggy but he seems happiest in a baby carrier completely upright. He has his daytime naps when I can watch him sleeping on his tummy and he settles so much better and sleeps for longer periods. I'm sure eventually he will also be a nighttime tummy sleeper. I have used a humidifier for the last 2 nights and there has definately been an improvement in his congestion.

Does anyone else have an uncomfortable baby following the night feed. That seems to be his worse time...after his 2/3am feed. Even after keeping him upright for 20-30 minutes he still seems to be really uncomfortable once I've put him back down and will usually only last a couple of hours before waking up crying with his fist in his mouth.

Today he has also started a new thing I've never seen before...instead of putting his fist in his mouth he puts his fingers really far into his mouth making himself gag. It's awful

 

[sezzolou]

Nela...

I totally understand how you feel. Unfortunately all of this has really taken a toll on my bonding with my son I hate that I still have so many doubts and feel so hopeless and out of control sometimes. My parents have actually moved in with us for a month to help out as I'm finding being a mummy so challenging. I'm not a young mum...33, this is honestly the hardest thing I have ever done and I cope with quite a stressful job as a nurse.

 

[mush23]

Today he has also started a new thing I've never seen before...instead of putting his fist in his mouth he puts his fingers really far into his mouth making himself gag. It's awful

Dd does this too it's horrible to see I tend to just pull her hand away and offer hr a dummy it usually works to distract her

 

[lilesMom]

Ds does it too.
Most bubs do. It's a lack of co ordination I think x

 

[sezzolou]

Ds does it too.
Most bubs do. It's a lack of co ordination I think x

Yeah, that makes sense. Thinking a about it...He's started refusing his dummy and sucking his right thumb but he can't seem to suck his left thumb so rams his fingers in instead.

 

[Nela]

Ladies, I must say, it's great to connect with other mums who are dealing with this and understand all that it involves. Thanks so much for joining the thread and sharing this journey with us all.

Things are tough here at the moment. He's getting horrible cramps from the constipation so it wakes him up and/or prevents him from falling asleep. Because of this, he is getting cranky and frustrated and is screaming more and more so he's been spitting up again now and having issues with reflux.

Nathan was seen directly at A&E after choking and having stopped breathing. That's when and where he was officially diagnosed. We are working with a team of specialists, including a speech therapist, physio therapist, pediatrician etc. We are in regular contact with our community nurse who, thank goodness, has taken a personal interest in us and has been our biggest supporter. We have not seen the pediatrician yet as he is busy so we keep being sent to other professionals to see if they can do anything. I know the meds won't cure him but if they could at least reduce the bad days, that would help. As for his treatment, we were told to keep him on the standard milk with the carob bean flour in it. I'm not sure why but they are the doctors so I am just trying to listen to them to at least show that we are doing everything they have told us already.

All his mattresses are raised and he does sleep in a car seat/swing etc. at times as they have suggested. I have inquired about the possibility of raising the actual bed itself by using blocks as this would be more in line with the SIDS recommendations (by not raising just his head as the mattress is too soft and ends up mainly only raising his head) and was told that this was a good idea so I'll be making blocks this weekend to do that.

My SIL was here yesterday to give me a break but I didn't get to sleep. My migraines are coming at me from all sides now due to the sleep deprivation, stress, and hormone changes. I haven't slept a decent night since I was 37 weeks pregnant! I'm still trying to recover from the csection. Lol. Anywho, I had hoped that him being with someone less tired would help him but he was just the same. He was just cramping too badly to sleep. I will definitely be pushing for things today when his nurse comes over. I'm hoping he'll act the same when she is here as she will really push the doctors if she sees things aren't better. They tend to listen to her more as well since they don't brush her off as being a first-time mum and being too emotionally involved. Lol.

We have an appt at the hospital on Tues. as well. I'm not sure who we'll be seeing but it's most likely the physio therapist as we haven't met them yet. Have any of you seen a physio therapist with your little ones? I'm still trying to understand what a physio therapist can do? Should be interesting. I'm willing to try almost anything they suggest at this point!

How are you ladies coping? Do you get outside help? Sezzolou, I see you said your parents moved in for a bit. I cannot imagine having to juggle work at the same time! I am lucky to be a stay-at-home mom and feel bad for my OH trying to help and juggle work. Much love to you, mama and any other in the same situation!

(posting cause battery is almost dead)

 

[mush23]

We're having a bad week the week dd had her 8 week vaccines on Tuesday which has put her off her milk now she's screaming all the time as she has a tummy full of nothing but acid :/ this really will drive me mad one day

 

[sezzolou]

Bad day here too lo was awake from 1.30am this morning and would not settle at all. He seems to suddenly be burping lots more than usual and being sick, not loads but he cries every time, bless him. He squirmed all day and fought all his naps. Luckily he has a really good bedtime routine and always goes straight to sleep at 7.30 after bath, bottle and upright cuddles for half an hour. Just really wish he didn't still wake up in the night as that's when all the problems kick off again. Roll on Monday for weight check and Drs app...although he also has his injections app the same day. Glad to hear you might be getting somewhere Nela! It's such a relief when someone actually takes this seriously and wants to help. My lo's Dr admitted she didn't really know anything about reflux, she will be referring him on Monday if things remain the same.

Does anyone's lo have milk protein allergy? Something like 40% of reflux babies have it. My Drs not even willing to consider it as he doesn't have a rash or bad poos. It would have been nice to eliminate it before starting him on meds though as he always has a red bottom, passes excessive painful wind all day and has such bad congestion and puffy red eyes...all signs of a milk protein intolerance or allergy the health visitor tells me. They advised against trying soy milk though.

 

[lilesMom]

Mush hugs xx
Stay sane xx ;-)
Easier said than done but u can do it.

Nela hve u thought of maybe seeing cranial osteopath.
Simon has had 2 session.
He has sluggish bowels. Not total constipation cos of comfort milk
He went twice easily after our session today.
She said she freed up the nerve connected tithe bowel im his neck today and to expect it to ne easier for him to go now. She was right.
Id imagine physio could help strengthen muscles and loosen put stuck muscles too.
We r goin for physio but that's cos he had a stroke and has mild cerebral palsy.

Hi to all xx

 

[lilesMom]

Sezzolou we posted at same time.
I've qs milk allergy with 3 docs and all said no way.
If nothing iswrong with his swallow ( getting it checked in 2 weeks)
I may try hypo allergenicmilk.
5 of my nieces ans nephews hve milk allergy.
But admittedly they all had rashes and blisters. So......

 

[Nela]

Hey guys, sorry for being late coming back, my laptop power supply went kaput for some reason. My tablet wasn't charged and my cell phone also isn't holding the charge. Oi!

Sorry to hear so many mummies (I almost feel like a mummy right now) and babies are struggling this week. Man, I sure hate reflux. I think I am quite shocked (and frustrated) about how 'simple' it sounds in theory (I mean, heartburn, take antacid, problem solved?) but how complex the treatment actually is. I never knew acid reflux could nor would cause this much upset! Hugs to all of you and your little ones!

Yesterday was interesting, to say the least. Our community nurse came over as we've been deemed deserving of some extra help as Nathan is considered to be a more complex case. She wanted to come teach me some baby massage techniques to help relax him and strengthen our bond. I figured it would be a nice thing to learn, thinking it might even help do it before bedtime and help him sleep. So she started showing me and made me do some as well (eeeeeeeeeewwwwwwwwwwwwww so much oil!!!) and then showed me some more. He was very very tense to begin with but very slowly started to relax. Just when she thought she had gotten to the point of relaxation, he made a very sad face and started screaming and screaming and was tense all over again. She couldn't believe it. This time it was her turn to try and console him. I sat back and watched, almost slightly amused at the fact that she would truly see what we are dealing with now. She put him in the 'plane' position and he stopped screaming, just started scolding. (Do your kids do that? Chat angrily after a screaming fit? I almost feel like he is cursing the dang reflux and cramps and explaining how angry he is. ) Anyway, 5 mins later he was screaming again. She just looked at me like "Wth?" and I replied "Don't look at me, I've been at it for weeks and I haven't a clue what else to do." She immediately got annoyed. Not with us, but with the lack of followup there had been. She handed LO over to me and told me she was heading straight to the office to get the community doctor to call the hospital. She told me it shouldn't still be this bad, not this often. Heh. Finally someone who agrees. Anyway, on Tuesday, we are going to have a proper appointment with the physio therapist (so hopefully there will be some good work done there) AND speech therapist as well as a pediatrician if needed. They will be making a more specific plan and we should be having more intense follow up after that. However, if things are still bad this weekend, she told us to head over to A&E. Heh.

Meanwhile, we called the family doctor for something to help with his constipation. Got the receptionist who told us she'd let the doctor know, and for us to call back late this afternoon to see what the doctor decided. I hope to heck she won't have decided to 'wait and see' otherwise heads might roll...

In good news, I got the all clear from my gynae today as being okay to return to normal activities as I've recovered well enough from my c-section. I've taken all the necessary steps to ensure that we won't be making another lil one annnnyyyytiiiime soon so we can focus on Nathan.

Any ladies got plans for the weekend? Anyone able to do anything other than dealing with reflux? Haha I can't even think of doing much these days, there's just no time. By the way, how many of you mamas have other little ones? How do you manage? I can't imagine having to spread myself thinner than I am already spread at the moment. I'm trying to focus on the holidays to be a little more cheerful. I know it's a bit away but it keeps my mind occupied on happier things. How do all of you ladies burn off some steam and distract yourselves? So far, I don't really have time to do much else than take care of a screaming baby myself, but I sure hope to be able to dive into a hobby or two soon in between the fits...

to all!

 

[Nela]

double post

 

[mush23]

Nela I'm glad someone's finally listening to you, it sucks when everyone tells you nothing's wrong. Today someone actually said "oh she looks fine to me" I was like yeah tell me that when she screams so hard so goes purple. I saw the dr for my 8 week check and was put on Prozac cos I admitted I'm finding it so hard I don't want to be a mum any more. But on the bright side it's mine and dd's first swimming class tomorrow which I'm very excited about also dh is off for 2 weeks and has promised me a whole day off this coming week what's everyone else looking forward to this weekend ?

 

[mush23]

Also to answer your questions I don't really do anything for myself atm but I'm hoping to join yoga classes soon to relax and get back in to shape. Also I don't really do anything to let off steam hence the Prozac hahaha. There's only 80 odd days till Christmas donuts something happy to focus on and look forward to

 

[lilesMom]

Hey guys.
Nope I never ever leave my ds either ;-)
He calms better for me so id feel unfair on him ans just be thinking about him all the time anyway
Thinking of getting a back massage but I've wanted one for months and still haven't.;-)
Hi to all xx

 

[KAMW]

i think this group will stop us all going insane lol

I sure hope so! LOL. How are you doing there? How long has your LO been diagnosed?

they said it was reflux at 3 weeks, she had all the symptoms your lo had and she just couldnt hold any food down, i switched her to aptimil reflux which helps a lot, although she still has really bad days, im doing ok, just wish my husband didnt work 14 hour days but he works his ass off so i cant complain

How are you doing?

p.s i still have all my hair lol

 

[sezzolou]

I manage to get to yoga once a week for an hour which is fantastic. Having a down week this week...really missing my pre baby life! Part of me wants to turn back the clock and stay baby free! Today's been a pukey day which is new to us, lo has silent reflux but for the last 24hours has vomitted so much even hours after his feeds. It's meant he hasn't napped all day so it's been a stressful day. Hope everyone else's weekend is going ok?! X

 

[sezzolou]

Just a quick question before I go to Drs with lo today. Aiden has started sucking frantically on anything he can after his night feeds. It's a new thing for him. Is it just a normal comfort thing do you think or could it be reflux related? Trying to get my head together so I know what to say to the Drs. X

 

[Nela]

Sezz, my lil guy sucks frantically when his reflux acts up as he tries to swallow it down... With the vomitting, I would not be surprised. I really hope your lil one feels better soon.

How was everyone else's weekend? Iapologize, I am usually not around much on the weekend... Things were actually pretty good here. We started Nathaniel on Lactulose on Friday as he was just miserable with the constipation. It seems to be working slowly. He definitely has more problems with reflux when he is constipated. I guess the crying and forcing to poop makes it easier to reflux? I also finally figured out that I had been overstimulating him. I was sobbing because it seemed he was always worse during the weekdays and I thought maybe he was feeling my stress or something. Turns out, in my 'panic' any time he would start crying, I hurried to distract him, thinking his reflux was starting and wanted to prevent the screaming... Turns out the poor kidjust wanted to sleep. I found out when he immediately dozed off after wrapping him. I had to check that I hadn't asphyxiated the poor thing. I thought it was strange that it worked so suddenly if he was in pain. Did some research and voila, overstimulation. In my defense, I had tried putting him to sleep by rocking, singing, etc. It never worked so I thought he needed something else but it turns out his hands were distracting him and keeping him awake, that plus his cluesless mother... It certainly helped this weekend to wrap him when he'd fuss! He's still having some gas issues and this morning he strained so hard right after his feed that he did a small (like not across the room as it is often ddescribed!) projectile vomit. I got him to sleep though. The msost amazing thing was that he slept 6 hours lastnight. He ate at 10, slept til 4, ate, and slept til 7 again. I managed to wake when I heard him sucking his fist so I got his bottle ready and changed him before he even started crying. My OH didn't even notice and was a lil concerned this morning, thinking he hadn't fed He had had a little bit extra before goig to bed so I am thinking that might have helped? Whst do you ladies do with your feeding routine?

Give news when you can! Wishing you all a week free (well almost free at least) of relux!

We have our appt at the hospital with the pediatric team tomorrow... Fingers crossed that some progress is made!

(Sorry for typos, stillon tablet until laptop cqble is replaced )

 

[Nela]

Hi ladies,

I'm afraid I had a bit of a meltdown this morning. I was so hopeful for today's appointment. Instead, it was a complete and UTTER waste of time. They didn't say or do a single thing they hadn't said or done the last time we saw them. I was fuming the whole freaking time. Telling us things like "well make sure you keep him upright after feeding" etc. No *censored*! Really?! I had NO idea. *Rolls eyes*

They seemed a little annoyed that we were there if maybe the constipation was making the reflux worse. Yeah, not like THEY told me that when I called them and told him he was constipated and having a really rough go with the reflux again. If I had been told, I wouldn't have taken so long to piece it all together and get him something! Why do I constantly have to figure out what is wrong on my own? I am a frist time mum and I am not a doctor! They were also a bit annoyed that we were there so soon after starting the Lactulose that we got on Friday. Yeah, whose fault is that exactly??? I had told them 2 weeks ago that he was constipated and not doing well. They told me to 'wait and see'. Meanwhile, his reflux and constipation got worse so when his nurse came over, she told us to get the Lactulose from the family doctor as it would be easier to get. Of course, this was on Friday and I didn't want to leave him like that all weekend with no one to call so we got it! Not my fault our appointment with them was already booked now was it? Geez. Anyway, now they told me it is possible the Lactulose is causing him more gas which is causing more pain, more crying, and hence more reflux. So now, we have the Nutriton helping but not curing the reflux, the Lactulose maybe helping the Nutriton's effects but maybe causing worse, and the Infacol trying to deal with what I can only assume is the extra gas caused by the Lactulose.

I have NO idea why the physio therapist was even there as there was absolutely nothing different from our last appointment with just the speech therapist. In fact, it was like a mirror appointment, just more speeded up. All we got out of this is my OH losing hours of work and us being more frustrated and discouraged.

Of course, Nathaniel, being the adorable sweet child he is, was perfectly fine at the hospital this morning. Of course, he screamed and twisted in pain all night, but why would he show them that when he can make us look completely insane? He drank his bottle and happily drifted off to sleep. relaxing his hands after I had just told him that it's extremely difficult to get him to relax. Oh, and the topper? An enormous smile when we left. I might strangle him before his first birthday...

I updated our community nurse (the one who pushed to have us seen because she feels Nathan isn't well at all yet) and she called me straight away. She's just as annoyed with it all and feels that they are really just bouncing us around. She brought up something so simple as well... Has his poop softened? Yes. Okay, if the poop is softer and is coming out several times a day, we can rule out constipation. If we can rule out constipation, then his crying and reflux is not due to the constipation itself is it? It's either a) related to gas from the Lactulose or b) just is not under control yet. Bravo, she figured it out in 2 minutes, not 5 days (they told us to wait until Friday to see if the Lactulose works or not!)! Omg.

Ladies, at this point, screw the coffee, I need something stronger. I asked the nurse where the psychiatric hospital is because I'm about to head there. Seriously, it's a good thing she is around because I don't know what I would do without her. She is going to contact our community doctor and see what the doctor can do and see if she can bypass all this and send us straight to the pediatrician because our nurse just isn't satisfied with their handling of us.

Oh and we've basically been told that they've told us all we need to deal with the reflux and that there is nothing more to be done if it is an issue. So I guess that's that then, no Gaviscon, no nothing!



On a good note, they say he's a month ahead in his motor development. Everyone keeps telling us that. I was surprised when he grabbed his pacifier out of his mouth and flung it yesterday but what do I know? Lol. In fact, they told me he's maybe a bit too advanced for his own good as his brain still can't actually process what he's physically doing and taking in.Tell him that, he's the one constantly wanting to bounce around and do things!

The other good thing is that he seems to be wanting to be in my arms more and more. This is especially nice since I've been told several times that maybe my stress is stressing him and making him reflux. Sure helps to know that I am not being such a bad mommy if he actually wants me around!

Dear oh dear, this is sooooo not what I had in mind when we found out he has reflux. We can send men on the moon but we can't help our babies with heartburn? What is up with that?

How are you ladies doing? By the way, how old is everyone's LO? Have your lil ones passed the 3-month-hopefully-cured stage? Hope to hear from you guys soon. Hang in there ladies!