Help Me – 2nd Reflux Baby :-(

[Anonymous]

Hi everyone

Please help me, I am stressed and exhausted and feel like I am just surviving and barely coping anymore!

I am a Mummy of 2 lovely babies – DD is 21months old and a former silent reflux baby which was managed with 15mg omeprazole (10mg morning, 5 at night) and neocate. This combination worked for her from 5months old ish and by 10months she was on regular formula and solids and had been weaned from omeprazole.

DS is 6 weeks old and appears to be suffering more severely than DD ever did. He was born at 36 weeks and has had problems feeding since day one. I initially tried to kid myself that it was only a problem with breastfeeding and moved him over to formula at 10 days. Things have gotten progressively worse with feeding.

He is not a colicky or easily upset baby. When fed and his tummy is settled he is an angel baby and sleeps well and is a content and happy little man. But his tummy issues are so bad that he spends 90% of his time fussing, crying and extremely hungry but unable to feed.

He acts hungry – rooting etc. and eager to latch on to the bottle but the trouble either starts immediately or after an ounce. He starts to choke on the milk, comes off the bottle and cries, coughs, splutters, squeaks, gags and cries. Then latches on and takes another few sucks and does it again. After 10/15mins of this he is quite distressed. After about an hour he is getting so distressed but still willing to suck I end up giving him his dummy and cuddling him to sleep. He wakes hungry again 45mins or so later. This goes on all day generally with him managing 1-2oz every 2-3hours (this has regressed from 3-4oz every 2-3hours at 2-3weeks of age) until eventually at some point early evening he is just too tired to protest at feeds anymore and easily takes 3oz every 2hours. He feeds really well from about 6pm – 2am and is then back to his tiny amounts every hour with screaming 🙁 His usual milk intake is 18oz on a bad day to 25oz on a good day.

His feeding fits the description of infant dysphagia (I think he has a problem with swallowing which may be because of pain in his throat from refluxing) but I have mentioned to his paediatrician who dismissed it and said that it’s just a general term for difficulty feeding and most reflux babies have trouble feeding.

We have seen a few paediatricians in the local hospital but the trouble is we live in a small area of Scotland and I don’t think the paediatric team have too much experience with reflux.

He has been on omeprazole (LOSEC MUPS) 5mg for a couple of weeks with no difference. I upped the dose to 10mg on Friday and think he may be a little less irritable between feeds but his feeding has not improved at all.

We tried Carobel thickener which made a HUGE difference to his swallowing (able to finish 5oz bottles) but it causes eczema, extreme diarrhoea and colic/wind within a few hours and ends up with DS then screaming and refusing feeds during the night as well. The longest we managed to stick with Carobel was 10days before I had to admit defeat. I have tried other thickeners – baby rice cereal which goes grainy and makes DS choke and splutter even worse and cornflour/starch which doesn’t have the creamy, sticky easy texture of the milk that Carobel does and wasn’t helping him.

I have tried infant gaviscon, SMA Staydown milk (anti reflux formula that thickens in the stomach) but these don’t do anything at all except give DS severe constipation.

He hardly ever projectile vomits (only when I have laid him down too quick or haven’t got all his wind up or if I try to use wind drops) and some days he barely brings up any milk at all. Other days his milk seems to stay in his stomach all day and he just doesn’t get hungry and constantly brings up mouthfuls of curdled milk. Other days he is starving all day and constantly spills mouthfuls of watery milky sick.

He is prone to constipation but I manage to keep this under control by giving a little extra water each day and a tiny dose of lactulose if he has gone more than 24hours ish.

Apart from the feeding difficulties DS just does NOT sleep at ALL. He cluster feeds to late night, has a good 2hours after midnight then starts the fussing and upset at 2am again every night without fail. In his sleep he is restless and grunts, strains, back arches, cries out, gulps, coughs and chokes and mouthfuls of sick constantly from one feed to the next. In between all this he gets hungry and demands (screams!) for his bottle but can only manage 0.5oz – 1oz and then finally settles down and sleeps 45mins max before waking again. It is literally a living hell because I have my almost 2 year old to get up with during the day. I’ve had to stop driving because I’m so sleep deprived I can’t concentrate on the road.

It is extremely difficult to get help as his paediatric team barely know anything about reflux at all. They won’t increase his dose beyond 5mg omeprazole (I have increased it against their advise) and when I asked about adding ranitidine as well they told me that they generally don’t use that medicine here. I have asked about domperidone but they have said it is only used for babies who forceful vomit.

I asked about alternative thickeners since this helped his feeding so much but I was told that there are NO alternatives for babies under age 1. DS feeding is getting progressively worse with average intake dropping every week and I feel that it is only a matter of time before his weight gain slows or stops – at the minute he is gaining brilliantly 6-8oz a week (5lb9 at birth, 8lb8.5oz today). I asked what would happen if the feeding difficulties continue and was told the next step would be tube feeding if his weight was affected 🙁

I have heard of something called Xanthan Gum so have ordered some and hope to try it as a thickener.

I have considered Neocate (I’m sure I would be able to get a prescription for this) but I don’t feel that DS shows any intolerance symptoms except when we have used Carobel.

I have tried everything and am running out of options. I cannot go on like this for months and months, feeds are hellish and I end up in tears with DS. And it breaks my heart because he is constantly hungry and eager to take the bottle but he tries so hard and he just can’t get enough milk down him.

I tried –

Homeopathy (no difference!)

Charcoal which didn’t make much difference but really helps gas

Various gripe waters (no difference?)

Ginger and fennel (no difference?)

Making DS wait longer between feeds (makes him worse)

Every combination of bottles and various teats I can find

Keeping him upright (helps a bit)

Propping upright for sleep (helps a bit)

Tummy sleeping (helps the most)

Please make suggestions on what I can do next for my brave little boy x

[hellbennt]

Hi & welcome!

I would TELL drs your son needs a SWALLOW STUDY. Tell them you need to know if he is aspirating! This test watches mechanics of swallowing and also sees if there is aspiration when swallowing/eating.

If formula needs to be thickened they then prescribe a thickener for his formula w/ a very specific thickness/viscosity…

Maybe he has Delayed Gastric Emptying? DGE?

Ask for this test, too (might be called a milk scan?)

If there is a problem w/ the stomach emptying too slowly, then there is a medicine for this – it’s erythromyacian, which is an antibiotic, but it’s prescribed in low doses and somehow helps the milk get through their systems faster

[Anonymous]

Thank you.

Do they use erythromyacian in the UK? I have only ever heard of domperidone use here.

We are back at the paediatrician on Friday (here in the UK we have a family “GP” and only see a paediatrician for more serious issues) and I am going to ask for a swallow study, I think they call it a VFSS here or something?

I’m a nervous wreck and can’t sleep at all for worrying about DS’s breathing with the reflux. He has an Angelcare monitor which has done the warning beep a few times, at first I thought maybe the pain was making him hold his breathe but the more I research I am sure his reflux is affecting his airways 🙁

I am sure when he swallows it affects his airway somehow as there is no other explanation for the coughing which happens every feed and he fully chokes at least daily on a feed. I have taken him to the emergency department at our hospital three times only to wait for 6-12hours to see someone and have them tell me it’s normal.

I will ask about delayed gastric emptying too. I remember with my daughter they said that they didn’t test for it except in severe cases with weight loss etc. but that if I wanted to try domperidone it was up to me. I will write down the name erythromyacian to ask about. I can hear Alex gulping in his sleep even 2 hours after he last finished a feed so definately a possibility! It is always worth trying for 2 weeks to see if it makes a difference since they won’t test for it.

Well, while writing this I’ve just had a call from the dietitian who has prescribed a different thickener (Hormel Thick N Easy) to see if it improves his feeding again. She listened to my concerns about his swallowing and feeding and has referred us to a speech and language therapist to get his swallowing investigated – she is the first person who actually listened to my worries on his swallowing and I hope we are finally getting somewhere.

I have been offered a hypoallergenic formula but I really don’t feel that DS has a milk intolerance. Is it worth trying to rule out or would you go with gut feeling?

Mum had DS last night for me so I could catch up on sleep. Thank goodness for her, yesterday I was falling asleep on my feet. She has said he was pretty awful and upset and restless from midnight until 6am. He fed well during the night but has gone back to crying and struggling at feeds today. And she has said she is tired and even if she gets him into a deep sleep and puts him down he wakes 15mins later screaming – my family have always thought my babies problems were in my head but I think now she’s beginning to realise that actually something isn’t right. She has just messaged me again to say she’s sure it’s something with his throat so I’m glad I’m not imagining it.

How come he can feed better during the night? He can also scream and struggle with feeds all day then suddenly take a feed without issue.

Thank you so much for all your help. Is there anything else I can do in the meantime while I wait to see what’s wrong? I will start thickening today to a level I know he is comfortable with. I think thickening makes his gastric emptying worse though so will ask about this on Friday.

I don’t understand why this is so hard 🙁 He’s such a chilled little baby and as long as he’s being cuddled and has had a little milk he’s happy. But not being able to feed him is awful and the sleep is horrific. My DD was a terrible baby – she screamed 15hours a day until she was over 5 months but at least she slept well at night and I wasn’t worried about her breathing, this is 10 times worse.

Thank you so much again for all your help.

[hellbennt]

hang in there!

he sleeps at night because he’s too tired to fight!

it’s known as ‘dream-feeding’ and you are not the first to notice/report this!

you must keep insisting on answers! I don’t want to scare you, but soo he may start to associate pain & eating & give up altogether

another med is called CARAFATE – not sure what it is there – demand this, too! why not! it coats the esophogus & helps it heals- it’s used for stomach ulcers w/ adults…

to needs to spaced about an hour from the losec

please read all you can about the losec, to help you understand and find a proper dose & form to administer

Prevacid 101:

scroll to the last page of this post, (it’s actually also about other PPIs like prilosec, too)
https://www.infantreflux.org/forum/forum_posts.asp?TID=1936&PN=0&TPN=1

as for the formula, if you can stay w/ the elemental formula it might help – by not adding extra strain (of having to break down ‘regular’ formula) to his already sensitive/upset system? I don’t know – you’re the mama – go w/ what you think…

also:

probiotics!

probiotics, brands used:

https://www.infantreflux.org/forum/forum_posts.asp?TID=8970&PN=1

[Anonymous]

Hi and welcome to this site!! I am SO sorry your little on is struggling!! 🙁 I know the feeling! My first child was terrible and so was my second. I had heard that if your first child had reflux etc. then most likely all of them will and it could even be worse with each one. We had our second child in hopes that that wouldn’t be true and with the thought that at least we would know more.

I would first recommend that you try a hypoallergenic formula. Try it for at least several days. With my first child a couple of people suggested a milk intolerance but I kept saying “No, it’s gotta be something else”. But when I started Quinton on Nutramigen I was surprised at how much it helped.

I personally wouldn’t use the erythromycin, because it is an antibiotic and antibiotics kill probiotics. I know that erythromycin is commonly used but I have not heard of it helping a lot for long term.

Your child really reminds me a lot of mine. Please read my blog (see signature). I believe you will find it of much interest!

[Anonymous]

Hi everyone

I’m so sorry I haven’t been back on to thank you all. The last 3 and a half months have been hell to say the least! Alex is almost 16 weeks.

A little update on Alex –

Alex is still suffering badly with reflux and I also know for sure that he has dysphagia. He cannot tolerate unthickened milk in the slightest and chokes, gags, vomits it out of his nose etc. I KNOW he is aspirating but I have lost all faith in the medical profession as they absolutely refuse to refer him for a VFSS study (modified barium swallow?). I am pushing and pushing and have a feeding therapist coming out to review Alex this week again. We currently thicken to halfway between stage 1 and 2 (it’s the texture of baby porridge or thick custard) and this seems to solve his swallowing problems and there is no choking or gagging. But the problem isn’t going to go away and I NEED the swallow study, I need to know why he has a problem with his swallowing. His paediatricians have admitted that he has problems with both sucking and swallowing but still aren’t referring him! I have noticed that he has a very high palate of the roof of his mouth, it’s almost like a closed hole I can push my thumb into and wonder if this is linked. His swallowing and sucking also get a lot worse the more tired he is and I work very hard all day carrying him around in a sling or going long walks in the pushchair so he sleeps long enough comfortably or he just can’t feed. I also have a 2 year old so this is exhausting me.

We tried Cow & Gate Pepti, Nutramigen LIPIL and then Neocate LCP. Pepti made him worse and he absolutely refused to drink Nutramigen. Neocate LCP improves the reflux hugely but even with trying various flavouring he only averages 9-16oz per day and each week has either lost weight or only gained 2 or 3 oz. Before Neocate he was drinking 32oz per day. Last week he was admitted to hospital for his poor feeding and weight gain and it was a horrific experience. Staff had no understanding of dysphagia and it is their policy not to allow parents to prepare bottles themselfs. Staff prepared the bottles and each one was a different texture, thickness and had lumps of thickener in it. Staff then switched him to a Carob Bean thickener without my permission because it is easier for them to prepare than my starch based thickener and I had already warned them he is severely intolerant to Carob Bean. So in hospital he had diarrhoea, severe tummy pains and eczema, congestion and vomiting. His intake reduced to 5-9oz per day and they fitted him with an NG tube. The NG tube of course really distressed him and made his swallowing so much worse and he took nothing at all orally for the few days it was fitted and vomited, choked and gulped all night. We took the NG tube out and discharged him. I am disgusted at his treatment.

Before hospital he hadn’t been in any pain with reflux but was only taking 1oz of Neocate at a time no matter what we did and was quite unsettled with poor sleep as he was constantly starving.

Since coming home last week I took him off Neocate and back onto regular SMA formula. His intake has suddenly jumped to 24oz a day now and I expect he will have gained a good bit of weight this week. I haven’t told his paediatricians or dietitian that I have taken him off Neocate as I know they are keen to keep him on Neocate and feed it via NG tube if they have to.

Alex is more bothered by reflux since coming off Neocate but doesn’t seem to be severely intolerant. He has no diarrhoea or mucous, just worse reflux. He rarely vomits but is very colicky and unsettled, fussy at feeding, never sleeps, raspy/hoarse chest and a little congested. His sleep is very poor and the thing that bothers me most as he must be so uncomfortable.

I have increased his omeprazole to 20mg in capsule form and am trying to get the timing of it right to help him during the night. It’s delayed release and giving it at 4-5pm seems to be helping most. This carries him through to around 5.30am when he starts to cry, grunt, strain and groan.

Alex also gets domperidone 2.5ml 4 times a day. I know that domperidone isn’t used for reflux in the US but it is the most commonly used drug for infant reflux in the UK.

I also use a probiotic and digestive enzymes after every feed. I can’t use alkaline water as I use the cartons of ready made formula as he seems to tolerate this better than powdered formula.

I have tried to wean him back onto Neocate but even just adding 1/4 mix he reduces his intake from 4oz at a time to 1-2oz and screams his way through the bottle. Gut feeling tells me he will never take well to Neocate 🙁

Both my partner and I have become depressed, it’s so hard never getting a full nights sleep and dealing with a fussy unhappy and unsettled baby all day on top of the constant worry about his feeding and weight. Everyday is exhausting and I’m just hanging in there until he outgrows this.

[Anonymous]

I am so sorry your little one is still suffering!!! ((HUG)) And I’m really sorry you can’t get a referral. 🙁 And I too am really disgusted (mad) at that hospital for treating you son SOOOOO poorly!!!

I know that the probiotics and enzymes aren’t the answer for all babies and your baby might be one of those but beings that I know of many babies that have been helped by them and beings I don’t know a lot about different meds…. the most I can offer you is support and ask some questions about the enzymes and probiotics you are using.

What is the name of the probiotis and enzymes brand you are using? Or could you tell me the ingredients of them?

Also here is some stories from other moms that have children suffering like yours.

http://help4acidreflux.wordpress.com/lorraines-story/ and http://help4acidreflux.wordpress.com/federicas-story/

I wish you strength to be able to stay strong through all of this! I will pray for you! And I wish very badly that you could soon find answers for your little one! It is SO hard to watch our little ones suffer and not know what to do to help them. (((HUG)))

[hellbennt]

demand a swallow study. call every.day.

I believe a modified barium swallow might be different? find a pediatric SLP (speech/language pathologist) these are the ones who do the swallow study & ask how to get this done! call around. demand a swallow study!

get a new doctor.

try a family doctor!

keep demanding!hellbennt2012-10-18 14:37:25

[Anonymous]

We’re getting a swallow study! It’s called a VFSS hope it’s the right one. We have to see an Ear, Nose and Throat specialist first to rule out any physical causes so have to wait for the referral but at least I know he will get the test eventually and the professional help we need. We have seen a speech and language therapist and she agrees with the dysphagia diagnosis but admits she doesn’t know how to help us as she has no experience with infants and dysphagia but she has referred us for the VFSS. It will be in a specialist childrens hospital so should then get us the help and support we need. No gastric emptying scan just yet but the domperidone seems to be working well for him and he has a good appetite.

Thanks Happy Mom I will get a good look at those links tomorrow. The probitiocs are Udos Choice Infant Blend Probiotic and the first enzymes I had were MRM Digest-All but these seemed to give him tummy cramps so I have switched to “Zybert” Enzyme Formula. I crush 1 tablet and mix it with a teaspoon of probiotic and a teaspoon of fruit puree, keep it in the fridge and give him a little after every feed.

My Mum took Alex from 5pm yesterday until 1pm today which was amazing, I slept for 12 hours and feel much more positive. And he has fed and slept well today. I have split the omeprazole, gave 10mg at 5pm and will give the other 10mg before his 3-4am feed and see if this helps the night time unsettledness.

This forum is fantastic, I don’t know how I would have coped without you guys. I would never have known about dysphagia and thickening either and no doubt my boy would be severely ill and tube fed for a long time.

[Anonymous]

Sounds like things are moving forward and hope that soon you will get some answers.

The Udos Choice Infant Blend Probiotics ingredients are

Lactobacillus casei: 35%

Streptococcus thermophilus: 20%

Bifidobacterium infantis: 15%

Lactobacillus acidophilus: 15%

Bifidobacterium bifidum: 5%

Bifidobacterium breve: 5%

Lactobacillus bulgaricus: 5%

That is better than many products that only have 2 or 3 strains of probiotics in them. Ideal is 10 strains or more though.

The MRM Digest-All ingredients are Microcrystalline Cellulose and Magnesium Stearate. Proprietary Blend: Ginger Root Extract (4% Gingerols), Peppermint (Leaf Extract) and Triphala (45% Tannins – Anala, Behada, Harada). Amylase, Amylase Ii, Lactase, Maltase, Invertase, Hemilase, Cellulase, Protease I, Protease Ii, Protease Iii, Lipase.

I am not familiar with all those ingredients. Again this product does seem a little better than most as it has more then just the main 4 enzymes in it that a lot of products have. But if the other one that you are using doesn’t cause pain then I can certainly see why you would not use this one.

I have searched and can’t find the product Zybert Enzyme Formula.

When someone can’t break down proteins, they can’t get out of the system and will build up. When taking enzymes, they will start to break down this build up of proteins and can cause gas for a couple of days.

Also with probiotics it can cause the Herx reaction.

The Herxheimer Reaction is a short-term (from days to a few weeks) detoxification reaction in the body. As the body detoxifies, it is not uncommon to experience flu-like symptoms including headache, joint and muscle pain, body aches, sore throat, general malaise, sweating, chills, nausea or other symptoms.

This is a normal — and even healthy — reaction that indicates that parasites, fungus, viruses, bacteria or other pathogens are being effectively killed off. The biggest problem with the Herxheimer reaction is that people stop taking the supplement or medication that is causing the reaction, and thus discontinue the very treatment that is helping to make them better. Although the experience may not make you feel particularly good, the Herxheimer Reaction is actually a sign that healing is taking place.

What Is The Herxheimer Reaction?

The Herxheimer Reaction is an immune system reaction to the toxins (endotoxins) that are released when large amounts of pathogens are being killed off, and the body does not eliminate the toxins quickly enough. Simply stated, it is a reaction that occurs when the body is detoxifying and the released toxins either exacerbate the symptoms being treated or create their own symptoms. The important thing to note is that worsening symptoms do not indicate failure of the treatment in question; in fact, usually just the opposite.

You might want to try the probiotics and enzymes that we used as many babies and adults have found help with them. They contain 13 strains of probiotics and many different enzymes that break down all the different types of food we eat. They also contain prebiotics and some soothing herbs. But of course I can not promise that they will help your child but they might be worth a try.

Here is a page on my blog that describes the different types of probiotics and enzymes and how to find a product that is of top quality. Many people say that probiotics and enzymes haven’t helped and I believe this is generally due to taking poor quality ones.

I agree that this forum is great! 🙂 I just wish I had known about it 6 years ago when my little one was screaming in hours from pain etc…

[Anonymous]

Oh yes… I too am really glad you got that extra sleep!! That is awesome and it is amazing how proper rest can drastically change our outlook in life!! I highly recommend to all moms to give themselves a break from their children every once in awhile!!

[hellbennt]

Prevacid 101:

scroll to the last page of this post, (it’s actually also about other PPIs like prilosec, too)

https://www.infantreflux.org/forum/forum_posts.asp?TID=1936&PN=0&TPN=1

[Anonymous]

Thank you so much for this forum.

Another update –

After the last hospital admission I took Alex off Neocate and back onto regular formula still with probiotics and enzymes. Alex’s feeding improved hugely although still struggling with his weight – average gain is around 3oz per week. Because his feeding improved Alex’s consultant decided that Alex did not need a VFSS/MBS. Alex’s sleep remained horrific at 6-10 wakings a night.

Alex then got really poorly and we took him to emergency dept as he was struggling to breathe. A chest x-ray showed severe aspiration pneumonia and we spent over a week in hospital with oxygen and IV antibiotics. Medical team disagreed over the cause of the aspiration, myself and the dietitian and speech/language therapist are convinced the problem lies with Alex’s swallowing but most of the doctor’s argued that a swallowing disorder is extremely rare in a baby and the problem is more likely to be reflux. Alex left hospital with an NG tube in and strict instructions to be given nothing orally. We got an emergency referral for a VFSS tomorrow morning and removed the tube today as he needs to be feeding orally for it. He feeds well without it with milk thickened to stage 1 (nectar in the US?) but coughs really frequently between feeds and his sleep has gone back to horrific.

He no longer seems to be in any pain and is content and happy. The only medication he is taking is omeprazole 10mg in the evening.

I will update you all tomorrow.

[hellbennt]

I am not mad at YOU, I am so frustrated for you about the comments about a swallowing disorder being rare!!

SO WHAT? MAYBE it’s YOUR baby who has this ‘rare’ condition!!!

I’m sorry but it’s medical professionals like this that make me feel the need to continue to stay on this forum & help!!

what’s VFSS? a swallow study I hope?

keep us posted!

[Anonymous]

Oh I am so sorry your little on is suffering so much!! ((HUG)) I hope that you get some real answers soon!

[Author]

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