Toddler blue lips and not gaining weight

[Mumtotwoplusyou]

So my little boy hasn’t been well really for almost a year. He was first flagged at his year health visitors appointment for dropping centiles. Fast forward a year. He’s now 2 and totally dropped off the centile chart all together, despite eating like a monster. He’s a twin and his sister doesn’t struggle with weight even though she eats less.

He’s often unwell as In general colds and coughs but nothing drastic and he doesn’t need antibiotics. He’s anaemic and I’m iron. The thing that’s worrying me recently is he’s been having blue episodes. I’ve of course got him seen by his doctor and they are doing a 24 hour ecg on him next week. Just wondered if anyone had any similar experiences or insights?

Very pale. Has he had bloods done to check for anaemia? If failing to thrive, I'd want to throw in bloods for coeliac screening and thyroid function at the same time.

Yes he is anaemic hes been on iron, multivitamins and also fortified drinks/milk for the last year but nothing seems to help. He’s had bloods done they always show infections and all the markers are abnormal not nothing concrete enough apparently for any diagnosis.

Blue lips may point to some sort of cardiac issue, I think they’d also probably need to do an echocardiogram for your boy.
I’m sorry you’re going through this OP. Your little boy is very beautiful! 😍

Agree, it sounds like an echocardiogram is the only way to rule out several issues that should be considered at this point.

Hopefully your GP will have an idea who to speak to but they may need to check what the right referral route is for that - so do ask.

Oh bless, he does look peely wally, although a gorgeous wee boy. Have his levels been checked since he began the iron supplements to see if they're improving?

I would definitely push for an echocardiogram. My DS (also a twin)'s Ecgs always showed up as normal but it was found out later he had some heart issues. He was always skinny and had the blue lips.
He's a teenager now and still is as skinny as a rake and just can't put weight on. He never had the anaemia though, so hopefully it's something more straight forward with your little one.

My eldest used to get purplish blue lips quite frequently, very often in the bath, but at other times too. He was thin, not underweight though, but tall for his age. Every cough he got seemed to last forever and he was prone to high fevers with no accompanying symptoms. I took him to the GP, who discovered a heart murmur and sent him for tests. After two hospital visits about a year apart, his heart murmur was diagnosed as 'innocent' and the purple lips unexplained. He stopped getting the purple lips when as he got a bit older. He's now 13 and still very pale and skinny, but is generally in good health (apart from severe hay fever).

Your little boy is adorable. I hope you get some answers soon.

Thank you he is beautiful I agree 😍

@KittensTeaAndCake

I would definitely push for an echocardiogram. My DS (also a twin)'s Ecgs always showed up as normal but it was found out later he had some heart issues. He was always skinny and had the blue lips. He's a teenager now and still is as skinny as a rake and just can't put weight on. He never had the anaemia though, so hopefully it's something more straight forward with your little one.

Oh really? That’s really interesting as sounds quite similar to my little one. Do you mind me asking what the heart problems were and how they came about getting to the bottom of it all? I am quite worried about something being missed as he seems to get weaker and weaker and I’m increasingly worried about him.x

Have they tested him for cystic fibrosis? I can't remember if it's part of standard screening, but the blue lips and failure to thrive and coughs/colds made me wonder.

He's a gorgeous little chap, OP - I hope you get some answers for him soon.

He was always skinny, blue lips - I thought he had blue lips because he was skinny! It wasn't until he was about 6/7 that he'd say his chest hurt, I thought nothing of it to start with (bad mother) and used to tell him to sit down/have a drink of water etc.
(He also had a regular cough when he was little which the GP diagnosed as asthma but looking back it probably wasn't).
Long story short I took his pulse one day when he said it and it was racing (used to go up to 180-200 bpm even when resting).
Turned out he had WPW which is an electrical rhythm problem like a short circuit in his heart. He had a procedure to ablate the extra bit and he hasn't had it since Although when doing the echo at the time of his op they did find a couple of mild leaky valves which they still monitor yearly now. He's 17 now.

But as I say he never had the anaemia problem which almost sounds like a stomach issue rather than heart. But definitely get him checked out again and insist on an echocardiogram even if just to rule out any heart issues.

Good luck with it. Let us know how you get on

@KittensTeaAndCake

He was always skinny, blue lips - I thought he had blue lips because he was skinny! It wasn't until he was about 6/7 that he'd say his chest hurt, I thought nothing of it to start with (bad mother) and used to tell him to sit down/have a drink of water etc. (He also had a regular cough when he was little which the GP diagnosed as asthma but looking back it probably wasn't). Long story short I took his pulse one day when he said it and it was racing (used to go up to 180-200 bpm even when resting). Turned out he had WPW which is an electrical rhythm problem like a short circuit in his heart. He had a procedure to ablate the extra bit and he hasn't had it since Although when doing the echo at the time of his op they did find a couple of mild leaky valves which they still monitor yearly now. He's 17 now.

But as I say he never had the anaemia problem which almost sounds like a stomach issue rather than heart. But definitely get him checked out again and insist on an echocardiogram even if just to rule out any heart issues.

Good luck with it. Let us know how you get on

Thanks for sharing and I’m really pleased your little (now big) one was sorted. Yes I have wondered about that too. If he’s anaemic maybe not absorbing his food for whatever reason, which would also explain the weight thing. Also like you say his blue lips could be caused by him being so underweight perhaps 🤷🏼‍♀️

Thank you I will do.

@SpaghettiNotCourgetti

Have they tested him for cystic fibrosis? I can't remember if it's part of standard screening, but the blue lips and failure to thrive and coughs/colds made me wonder.

He's a gorgeous little chap, OP - I hope you get some answers for him soon.

Yes they did test him for cystic fibrosis. We actually have that both sides of mine and my husbands family so it was one of the first things they looked at but his sweat test came back normal.x

One of mine fell from the 97th centile to the 2nd despite earing like a horse and regularly having blue lips. A heart murmur was found and it was repaired when he was 4 and he is now over 6 ft tall and a normal and doing great. To be fair though all of my children were like this weight wise and only 1 had any diagnosed problems

@Whatsherusername

One of mine fell from the 97th centile to the 2nd despite earing like a horse and regularly having blue lips. A heart murmur was found and it was repaired when he was 4 and he is now over 6 ft tall and a normal and doing great. To be fair though all of my children were like this weight wise and only 1 had any diagnosed problems

Yes I also wonder whether he may just be prone to infections and perhaps it’s something he will grow out of. 🤷🏼‍♀️ My other two aren’t particularly big, but just average I guess so hard not to compare him when he eats so well and is now not even on the centile charts. Well below the 0.4th.

Really pleased to hear your little one was sorted and all ok now ❤️ X

How is your little DS @Mumtotwoplusyou, got any answers yet?

Thanks so much for asking. We actually don’t have anything concrete no. It sort of all goes on and on. With the current issues in the nhs unfortunately his appointments have been postponed and he’s not been seen. He’s due to be seen by his paediatrician on 7th June finally. His breathing has been quite laboured recently and he’s had lots more blue spells. I’ve taken him to the gp tonight and they have reassured me he’s not at immediate risk.

I can’t quite decide if I’ve gone mad or I should be very worried. He’s falling constantly. Today at nursery he had a bad one. I don’t know if that’s a tired thing or something else but he’s really struggling to walk/run about. Will let you know if I ever get any answers or even better if he improves!xxx

@Mumtotwoplusyou did you get any answers? Going through something similar with my dd.