Help Me – 2nd Reflux Baby :-(

[Anonymous]

Yeah that’s a video swallow study. Sorry I am in the UK and they use different terms here! We are going this morning, I’ll come back and update you all later!

Last night was a good night, he only woke 5 times for a short while each time which is pretty amazing for us. He really doesn’t seem to be in any pain any more, he is such a happy little guy. His sleep is really poor, I guess it could be unconnected but gut feeling tells me he is still uncomfortable or irritated when trying to sleep. I already have him on his tummy or side and the head of the crib propped up so I don’t know what else I could do for him.

I am livid that I’ve been telling doctors since the day DS was born that he has a problem with swallowing and choking and they have laughed at me and passed me off as a paranoid mother who googles too much. It has taken aspiration pneumonia for it to be taken seriously, it could have been a lot worse. I thought it was supposed to be prevention rather than cure? Unfortunately in the UK there’s no way to change doctors or paediatricians – you are allocated one by the NHS.

[Anonymous]

I am sorry you can’t get a different doctor and you are NOT a paranoid mother that googles too much! You are a very smart mother that is trying her best to help her baby!!

I was pretty frustrated with my dr too with my first child. He didn’t want to believe me either. And went as far as making me take stool samples every day for a week to prove there was blood in his poop. I was SO frustrated because I told him that I could SEE blood EVERY time he had a poopy diaper which was around 12 times a day at least! So for a week I took and kept these samples while having to endure my screaming in pain baby!!!

I am glad that your little one is not in so much pain anymore!

[hellbennt]

How are things going?

[Anonymous]

Hi!

Thanks for checking in on us.

A is 5.5months now, we haven’t really made any progress.

Was disappointed in the swallow study, I was expecting to be told what he can and can’t swallow but it was a very brief test lasting 10mins where they had him drink barium from a bottle (he hated it, screamed and only took a few sips) then told me that he didn’t aspirate although had pooling around his airway and a messy and vulnerable swallow. The also mixed a little barium to a puree and spoon fed it which he did well with. The instructions were to carry on with thickened feeds and slowly introduce purees. The study didn’t tell me anything I didn’t already know – I was expecting more answers 🙁

There was no mention of the chronic aspiration and pneumonia. A still coughs after and between feeds. He is still upset after feeds – sometimes screaming inconsolably for 30mins and then passing out into a restless sleep.

Still wakes every 30-45mins at night screaming.

We are still using domperidone 2.5ml x 3 per day, Thick & Easy in each feed, omeprazole 20mg (split morning and night).

Feeds are still poor – he is a very reluctant feeder and usually has to be asleep and very relaxed before he will feed. He is on high calorie milk Infatrini and takes around 20oz per 24hours.

I have ran out of probiotic so waiting on it being delivered but it will likely be after Christmas. I give him digestive enzymes in a little puree each morning.

I don’t know what else I can do for him 🙁 I am just barely hanging in there – taking it 1 day at a time and desperate for the day when he starts to outgrow this!!

Thank you so much for checking up on us.

[Anonymous]

(((HUG))) Oh… I’m so sorry that you are barely hanging in there! I know the feeling! And its so sad to hardly be able to enjoy the holidays because of your little one suffering. 🙁

I am wondering how much probiotics and enzymes you are giving? I suggest that you contact the companies of both the products and ask what the max dose is that you can give your little one. There is a mom on this site that said she wasn’t getting much help from the probiotics and enzymes but then when she doubled the dose then she saw a ton of improvement!

Also when and how often are you giving them? The more spread out they are, the better they will work. I give my boys a pill every time they eat and Shiloh does best when I give her a half of a pill with before every bottle. Also for my children, I find that they do better when they take the pills right before or during a meal, rather than after.

If increasing the amounts and how often you give them doesn’t give you better results, I would suggest trying something different. The kind of probiotic you are using only has 6 strains of probiotics in it. The ideal amount is 10 or more. The “Digestive Health” that we use contains 13 stabilized strains and also prebiotics. Probiotics work better when they are stabilized and don’t have to be refrigerated, and also work better if there is prebiotics in the product. As these are food for the probiotics.

Digestive enzyme supplements work best where they are broad spectrum meaning that there are all the different types of major and minor enzymes in there for the different stages of the digestion process. The “Digestive Health” contains over 20 different types of enzymes and also several types of soothing herbs for the digestive tract.

I am not saying that “Digestive Health” is the only kind of probiotic/enzyme supplement that will work but I just know that it has made a big difference in a lot of reflux baby’s lives.

Just giving my thoughts and ideas! I hope that you can find something soon to help your little one feel better! Happy Mom2012-12-20 12:44:06

[Anonymous]

I have been forgetting the enzymes and probiotics. Because he has a swallowing disorder it’s so hard to give them! I can’t add it to his milk because the enzymes make the milk thin.

I’ve ran out of probiotic but I have ordered one from the US as the ones here in the UK seem to be very basic. I have ordered Now Foods Probiotic which has 10 strains and at least 25billion bacteria per capsule. I don’t know how good this is but it was the best I could afford. It should hopefully arrive next week.

I am still using “Digest-All” enzymes.

I would be happy for you to send me a link of where I could buy the best enzyme and probiotic supplement in the UK.

Enzymes I was only giving one capsule in the morning because he gets so upset at the taste. Probiotics I was mixing half a teaspoon of powder in morning, afternoon and nighttime feed.

I have also asked my father if he would buy Alex the “RESQ” wedge.

[Anonymous]

I guess I either forgot or was unaware that you were from the UK. Sorry!

Yes, I am sure that the shipping for the ones that I use would be quite high and there is no one selling them in the UK as far as I know either. 🙁 As far as helping you find some in the UK I will be glad to help you but I’m not really sure how. Should I just google “probiotics/enzymes in the UK”? Or what do you have in mind?

As far as gettin your little one to take the probiotics and enzymes… you aren’t the first one to say it is hard to get them to take them because of the taste. 🙁 I wish there was some magic way to do it. My children have gotten used to the taste and don’t mind it. When Shiloh was eating baby food, she got so used to it added in that she wouldn’t eat the food without the pill in it. But I know that when it comes to children with swallowing problems or food adversions, it can be really hard to get them to take strange tasting stuff.

I know that probiotics and enzymes are not a cure all and that they will help some more than others. And I am sure that you are doing the best you can with them.

That is a good idea to buy a RESQ wedge. It might really help. My boys did best when sleeping as upright as possible in their swing or in the recliner with me.

[Author]

Posts