Author Topic: 6 week old - tongue tie, cows milk allergy & oral thrush  (Read 2256 times)

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Offline rachaelcole

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6 week old - tongue tie, cows milk allergy & oral thrush
« on: August 11, 2015, 21:04:28 pm »
Hi-I've posted a few times about DS as we were really struggling with him crying (or screaming in fact!) most of the time.  Turned out he had tongue tie which was cut at 2.5 weeks, but also was diagnosed a few days ago with cows milk allergy. We've also had oral/breast thrush...a lot going on for 6 weeks old!

Anyway, most things are now being managed so it's time to really concentrate on getting a routine (I also have a 20 month old girl).

We have created some bad habits just for comfort, he is by nature a slacker due to the tongue tie & he's fretful at the bottle & breast due to the CMPA. Because he had been in so much pain all this time he doesn't sleep well at all (almost as if he's afraid to sleep) and so is chronically over-tired.

He isn't good with sssh/pat to settle him and loses patience with the whole thing very quickly as he is so tired.

Any good ideas on where to start?

Thanks

Offline trimbler

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Re: 6 week old - tongue tie, cows milk allergy & oral thrush
« Reply #1 on: August 11, 2015, 21:19:51 pm »
Can I just start with (((hugs)))? That really is a lot going on for you all, glad most of that is being managed now. Don't forget, 6-7 weeks tends to be prime crying/screaming time anyway and often starts to ease a little (gradually!) after that... Tbh I'd personally just concentrate on getting him the sleep he needs however you can atm. Will he sleep in a sling? Slings are great, especially when you have another to run around after. Really, once he's had a bit more sleep, then think about starting to encourage the independent sleep if you're all ready, but I wouldn't worry about all that right now. You can however start to think in terms of routines, even with sleep props. You can log what he's currently doing, to get an idea of what sort of A times seem to suit him. I personally like to 'fix' the morning wake time to within an hour or so, but that's more personal choice. You can try to encourage a tiny amount of 'A' to come after the 'E', even if it's only a nappy change, depending on how long the feed is taking. But again, if the only way he'll sleep is by feeding then I wouldn't even worry about that atm, unless that messes up his digestion causing further pain (eg needing to burp). How's his day/night distinction going? Tiny steps such as keeping things really quiet and dark at night (I did feed to sleep at night, but only at night), and light during the day can help him to sort that out. Once he's less OT he'll be more able to work with you on sleep training, but really I wouldn't pressurise yourself with this just yet. Hope that helps?



Offline C&B&E

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Re: 6 week old - tongue tie, cows milk allergy & oral thrush
« Reply #2 on: August 11, 2015, 22:56:47 pm »
Huge hugs. My babies also had the same combination of ideas issues that you've got...well done for persevering.  My kindle battery is just about to die, but have a look at the fact sheet on here about thrush. Many doctors do but know how to treat it in mother and baby, and this is up to date info...We battled with it for months because we weren't treated correctly. https://www.breastfeedingnetwork.org.uk/detailed-information/drugs-in-breastmilk/thrush-and-breastfeeding/

Have you had to cut all dairy out of your diet? Do you think he could have reflux? X
Claire x



Offline rachaelcole

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Re: 6 week old - tongue tie, cows milk allergy & oral thrush
« Reply #3 on: August 12, 2015, 06:02:41 am »
Thanks for your replies. I too thought that getting the sleep into him is the most important thing, what I'm struggling with is getting him quality sleep. Because he will only take a few minutes on the breast, or a couple of oz of formula (as he hates it!) he wakes up hungry. I might try & take a day of 'bed rest' with him so he can size & feed whenever he likes to try & catch him up.

He sleeps well in the sling. He will sleep in his bed if I feed him to sleep & then put him on his tummy to sleep (DD is a tummy sleeper too!).

We were oy diagnosed as CMPA on Friday & I was told to cut down on dairy, but since I thought he was still reacting I've been advised to cut it out completely to see how he does. The dietician thought we should see improvement in him within 12 hrs of me cutting it out but that seems awfully fast!!?

It was originally thought that he had silent reflux as he doesn't bring his feeds back up, but has a LOT of wind & hiccups. As the medication had no effect on the screaming we have presumed it was the CMPA rather than reflux.

Thanks for the link-I was only given a loading dose of fluconazole originally, then went back & asked for further treatment to prevent a reoccurrence. I was only given the topical ointment! So when I went back with this second bout yesterday I insisted on the 2week course of fluconazole to really whack it on the head.

I just feel horribly guilty & sorry for both my babies. My daughter is too young to understand why so much of my attention is focused on DS, so she is playing up & not sleeping great. And I feel horrible for my poor boy who has had a rough start full of pain & discomfort.

We are 6 weeks in and yet to enjoy being a family which is really taking its toll.

So should I just try & focus on sleep for the time being, however it may be that I get it into him? I'm just stressing about how I break all of these sleep associations later down the line with a toddler in tow!

Offline trimbler

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Re: 6 week old - tongue tie, cows milk allergy & oral thrush
« Reply #4 on: August 16, 2015, 18:39:43 pm »
Hey, so sorry not to have got back to you, just been away for a long weekend. More (((hugs))) sounds like you're doing amazingly well! I think most of us find it hard to adjust to being a family of four, but you've had a harder start than most, so go easy on yourself please, no mummy guilt required ;)

Tbh I really would 'just' concentrate on doing what you can to ease the discomfort and helping him to feed and sleep however he can. Actually once he does get more sleep he should be able to relax more and then start learning how to sleep once you're all ready. If you can start to do that by 3-4mo then that's great, but as I've heard so many people around here say, if they're in lots of discomfort you can't really sleep train, they'll just associate sleeping with the pain which isn't helpful.

If you're worried about leaving sleep training too late, I'll share our experience with DD as a newborn, which involved two naps a day in the sling on preschool runs with DS, the third nap at home whilst DS had nap/screen time, fourth nap back in the sling, usually whilst kicking a ball around with DS, then BT once DH was home, so I did DD whilst he did DS. We didn't always get that third nap at home, due to appointments etc, but that was the only nap we did any sort of ST for, plus BT. And she still needed a lot of help (ie shh pat) with that one, until around 5mo, when she started self settling for 1st and 3rd naps at home. We didn't do this for reasons of discomfort but because I wanted to get outside with DS, but it worked great and all that sling use really didn't seem to interfere with her ability to self settle later. Remember, not all babies will really be able to self settling until 3-4mo anyway, before that they may need lots of shh pat or something similar. So if you can't do shh pat right now, really don't worry, make the most of being able to get out with DD using the sling and enjoy those extra cuddles with DS :) Sorry if that's very rambly, does that help reassure at all? More (((hugs)))



Offline rachaelcole

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Re: 6 week old - tongue tie, cows milk allergy & oral thrush
« Reply #5 on: August 23, 2015, 08:44:25 am »
Thank you 😊 We are now on our third bout of thrush (one after the other) and poor little man is so full of painful wind.

Although I'm reasonably confident it's not allergy related (his rash has gone completely) we are back to him screaming all day every day in pain. im pretty sure it's the thrush with the yeast in my milk fermenting in his tummy (his stomach feels like a popcorn machine at times!).

Docs won't give full dose of anything so we are stuck in this ridiculous situation where I'm almost being forced to formula feed to ensure he his comfortable. He refuses the hypoallergenic formula as it is disgusting-even the dietician told us he was unlikely to like it!

I'm so angry & frustrated at the system and feel like I keep getting fobbed off because no doctor ever has to see you more than once so it's not their problem.

I just don't know how to help him! 😔😔

Offline trimbler

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Re: 6 week old - tongue tie, cows milk allergy & oral thrush
« Reply #6 on: August 23, 2015, 18:14:15 pm »
Oh so sorry to hear this, big (((hugs))) you must be exhausted too! Have you posted on the medical/health board or on crying/colic? You may get more eyes on this there who've been through the same things. I have no experience with thrush, just tongue tie. Actually I might ask one of the mods to pop on here if you don't show up over there... More hugs, really hope things get better soon :-*



Offline jessmum46

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Re: 6 week old - tongue tie, cows milk allergy & oral thrush
« Reply #7 on: August 23, 2015, 19:08:18 pm »
Hugs that sounds so hard for you all :( I totally agree with all the sleep advice you've had so far, an uncomfortable unhappy baby is in no place to learn independent sleep so just cuddle, rock and hold that little one all you need to right now.  Once you are all more settled and well then we will all be here to help you gently encourage those good sleep habits :-*

From the medical point of view it can take a good 2-3 weeks to get dairy out of the system completely so I'm guessing if the rash has now cleared up you are at about that mark now?  However CMPA and reflux very often go hand in hand and I would give serious consideration to re-investigating the silent reflux side of things.  It may be the meds didn't appear to make a difference previously because he was still having cows milk so gut was inflamed and sore, but now that side of things seems to have calmed I think it would probably be worth another shot.  Are you UK based?  Do you have a regular GP?  I would push to see someone again and if they are unwilling or unable to help (many doctors feel uncomfortable prescribing the 'stronger' anti-reflux meds to little ones) can you ask for a paediatric referral? 

I presume you are trying some of the 'basic' things that are good for refluxing babies - elevate the head of the bed (put something underneath the bottom of the Moses basket for example), keep upright after feeds for 20 mins or so (slings are great for this), small and more frequent feedings?

I'm intrigued that nobody will prescribe a 'full dose' of anything for the thrush - have you questioned them about it and why not?  Honestly I know how hard it is but sometimes you need to keep pushing and pushing to get the help.  Will support you through it and hope you find someone who listens to your concerns seriously soon x

Offline rachaelcole

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Re: 6 week old - tongue tie, cows milk allergy & oral thrush
« Reply #8 on: September 04, 2015, 18:20:46 pm »
I just wanted to update after a couple of weeks-we are dairy, soya, beef, spices & citrus fruit free. Little man is EBF & we are using Infacol (for burps) & colief. We have also just started on ranitidine for possible reflux & I have a normal baby!! Well, for now at least, but WOW what a difference 😊

I found a doctor who is a new mum herself & so she has really helped find the needle in this haystack!

😊

Offline jessmum46

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Re: 6 week old - tongue tie, cows milk allergy & oral thrush
« Reply #9 on: September 04, 2015, 18:39:44 pm »
Hooray!  What a great update to read :D

Offline trimbler

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Re: 6 week old - tongue tie, cows milk allergy & oral thrush
« Reply #10 on: September 05, 2015, 17:21:59 pm »
Yay what wonderful news :D



Offline Buntybear

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Re: 6 week old - tongue tie, cows milk allergy & oral thrush
« Reply #11 on: September 05, 2015, 21:50:34 pm »
Wow that is a tough diet to follow but glad you have found a combination of foods and meds that seem to suit your little man. Good luck with it xx