How to deal with an Apparent Life Threatening Event (ALTE) in babies

[littlemiss83]

An apparent life-threatening event (ALTE) is defined as an episode that is frightening to the observer and is characterized by some combination of apnea (central or obstructive), color change (cyanotic, pallid, erythematous or plethoric) change in muscle tone (usually diminished), and choking or gagging. In some cases, the observer fears that the infant has died.


As many of you know, Kayden is having seizures due to his severe reflux, he goes blue at the lips, stares into space, limp & floppy & gasps for air. We have to do various different things to get him breathing again.

The only way to describe this is...it is as if he is dying.

Yes it is as scary as it sounds & im absolutely terrified.

The meds helped for a while but we may never have a way around this.

Please help!
xxxxx

 

[lewisca]

Oh Hun didn't want to read and run ! Have the dr said if he will grow out of it ? xxx

 

[Hope81]

Oh dear. Did the doctor advice you to buy a special cot bed / mattress for reflux?
You can also put sth ( like a blanket) under the upper part of the mattress to slightly elevate it a little?
There is also special milk for reflux that is somehow thicker.

I saw on what meds your LO is on and I was wondering how come he didn't get a treatment like metoclopramide (or sth similar) that makes the stomach empty faster practically protecting from reflux. Next time you are at the doctors ask why not a gastric motility med?
Also you shouldnt let him lay down flat for like 1/2 after feeds.
I am against early weaning but you may not have a choice here if it Dosent get better.
As about first aid you seem to know how to do it I bet it's so so scary though to see your LO like that.

 

[Binzy]

I wish l had some advice for you, must scare you witless!
Big hugs x

 

[littlemiss83]

thanks ladies yeah we have cot raised, he is on gaviscon with each feed to thicken it we also do the whole sitting while eating and after. lo cant be laid down flat or he has a seizure.

Were now on second type of meds started 2 days ago and its still happening have doc's apt on weds an il ask for something else. dont think he needs stomach emptied sooner, last few times its happened its been first thing in morning 13 hrs after last bottle.

even tho we were admitted to baby hospital and diagnosed weve still to wait for a referral to same hosp for more treatment/tests.

hope - u sound clued up on reflux do u have experience of it

xxxxxx

 

[Hope81]

Reflux can happen with an empty stomach but it mostly happens with a full stomach. Did they rule out everything else that can cause his seizures? Also reflux is not the most common cause of all ifykwim of seizures. I hope it's not only a coincidence that's there.
Did any of those seizures happen while he was awake and sitting upright?

I am a doctor, but no personal experience with gastric reflux.

 

[littlemiss83]

He had other reflux type symptoms, excessive drooling, crying for feeds then pushing them away & crying, severe arching of his back, he also put on alot of weight, was drinking 8oz every 2 hours, which doc said was way too much for his age. They said it was comfort drinking.He had all of those symptoms from birth but only started having the seizures in last month. The seizures happen at any time. Sitting/sleeping. Just right before it happens we are warned by a sucking/drooling/spitting out sound, then followed by a clicking/choking sound. immediately after, when he comes round there is always bubbly saliva comes up. is there any meds u can advise

xxxxxx

 

[Hope81]

It does sound like reflux but then one of the major meds for that is metoclopramide or domperidone or sth similar. I am a little confused about why he didn't get any of that but as those meds can act on the central system too maybe it's because he is seizing that didn't get them. Anyway next time you should ask about them too. In bad cases there is also a surgical procedure that can be made to solve the problem but if preferable to older kids as the little ones usually grow out of it and everything improves a little when solids are introduced.
I accidentally saw yesterday at the pharmacy special milk for severe gastric reflux. Maybe it worths a try?

 

[Hunnie]

I think this is what my friends sons both had? But it stayed with them until they were a lot older and had to keep a constant eye on them so set up cameras around the house so they could keep an eye on them constantly. They both grew out of it though but he said it was the most scariest thing hes ever seen xxxx

 

[jojo_2012]

Why not contact St Johns ambulance or something to learn basic life support might make you feel a bit more confident when he scares you?

 

[Lulu_Laroo]

I really didn't want to read and run, and I'm so sorry I can't offer any advice, but I really hope you can get some more help with this. I really feel for you, I can't imagine how terrifying it must be. xx

 

[pinkyprincess]

Why not contact St Johns ambulance or something to learn basic life support might make you feel a bit more confident when he scares you?

Agree!!

Really hope you're ok!

 

[littlemiss83]

I am gona ask the doc's tomoz to refer me somewhere for counselling for myself (coz im not handling this at all) and also for me & OH to learn first aid.

Hope - did you catch the name of that formula? OH has been saying tonight that we should try a diff formula, nutrigamen or something?? Would acid reflux not still be acid reflux no matter what the formula?

I'll ask about those medicines too.

Thanks for all your help its appreciated.

xxxxxxxxxxx

 

[Dustbunny]

I'm sorry I can't offer any advice, Chloe has reflux bit nowhere near as severe. I just wanted to give you big hugs because I can't imagine how awful this is for you xxx

 

[Hope81]

Sorry I dont remember the name of the formula but as I live in Norway it may not even be available the same one to you.
I will look again though next time I am at the mall. I am sure the doctor will know to tell you If there is such a formula available in uk and If he thinks it will be beneficial in his case.
The formula will maybe help with reflux after feeds but as you said he is refluxing in an empty stomach too so I am not sure if it will make a great difference but as the situation is quite desperate if it was my LO I would try it too for a couple of days to see if it makes any difference at all?

I think one more girl here had an LO that was diagnosed with severe reflux. Maybe you can ask her what meds her LO got prescribed?

 

[Cazza]

? OH has been saying tonight that we should try a diff formula, nutrigamen or something?? Would acid reflux not still be acid reflux no matter what the formula?

Romilly has bad reflux, not as bad as Kayden though.

She is currently on Ranitiden three times a day, it has made a bit of a difference, but she still does the burbling and coughing thing too.

I'm in the process of changing doctors because I don't feel they are staking it seriously. I have suggested the special formula (a friends LO did really well on it) but they refused.

Let me know how you get on!!

 

[mum2b410]

So sorry this is happening littlemiss- poor Kayden, and u!.....With regard to first aid we went in an nct course which covered basic life support, choking etc. Think it cost,about £15. Hope things improve for u soon hun, must b terrifying xx

 

[Laura_C]

Oh littlemiss, this must be so scary for you and your family

Have you tried SMA Staydown formula? One of my friends used it for her little one who had severe reflux, I think they have all the info on the SMA website.

Sophia has Larygnmalacia (floppy larynx) and this can cause the same issues Kayden is having in severe cases. They mostly grow out of it as they grow but sometimes a little op may be necessary. It does go hand in hand with GERD which is why I thought he could have this. I think there is also something called Bronchomalacia too. Does he sometimes have a strider at all? Xxx

 

[l_maclean]

I can't remember all the symptoms, but I'm sure my cousins little one had similar things, and he had trachea malacia ( floppy trachea) maybe worth having a look at some of these things just in case. Xxc

 

[Olive]

Oh LM, just wanted to send you a hug. Must be horrible for you. Hope you get some more help and things improve soon xxx