I am really worried about my baby - any ideas please

[mummytopebs]

I have posted before re my dd who is now 4 months. Since she was born her left hand has always went a blueish colour, when she was 6 weeks old her left hand and arm up to her elbow went black, she was admitted to hospital and had a heart scan which showed up no abnormality so was put down to immaturity in system.

The discolouring seemed to calm down a bit for around 6 weeks, but the last week it has been terrible again. It is no longer just her hand her left foot changes colour and more worryingly on saturday her whole body was kind of a grey colour. The last 3 mornings when she has got up her feet have been white, you press her foot and it doesnt change colour because it is that white. Today her left hand and arm has been blue all day and her hands have been freezing, she has now pinked up again.

I took her to the gp last week who said it cant be immaturity now so has referred her to a bigger hospital, it was our small hospital that discharged her saying it was an immature system, my gp has said that there is no way the blackness could be an immature system.

I have photos on my phone showing all these colour changes and the gp said they were horrifying. So we have an appt in 3 weeks at the bigger hospital but i am concerned as her arm and hand was the blue colour for around 4 hours today, with hindsight i should have taken her to a and e but would have had to take her to our small hospital who discharged her in the first place. I am now sat looking through the pictures and i am reaaly confused what this could be or where do i go from here

Sorry no experience but that you're going through this, and BUMP.

Hope you get it sorted.

Hi, I remember replying to your old thread. I don't have any advice but wanted to 'be here'.

Can you take her to A&E at the big hospital- that's what I would do as I'm not sure I could wait 3 weeks for an appointment. I would go to A&E of a really good hospital as soon as she turns any strange colours again.

Hope someone can help you, you must be quite scared. I hope you get some good advice and support.

No idea but please call your GP and get that appointment moved forward.

Also, if it happens again, take her to the larger hospital's A&E department.

I'm so sorry your little one is ill, but unfortunately I don't know what it might be. I just didn't want to leave this thread without any support. I hope you get some useful advice soon. I also hope your little baby gets well soon xxx

Gosh, sorry, I have no idea but it all sounds terrifying for you.

How far away are you from the larger hospital?

The other thing you could try is phoning the hospital and asking if there is any chance of getting an earlier appointment. Tell them that you are willing to take a last minute cancellation.

That sounds really alarming. I agree with the other posters - as soon as it happens again take her straight to hospital - any hospital. This is not a 'normal' symptom though it may be perfectly benign but you need answers either way.

Yes I would take her to A&E at the bigger hospital; is that a children's hospital. Sounds very odd. Is she happy in herself?

I say next time it happens take her to A&E straight away - they cannot discharge a baby under 12 months until they have been examined properly.
I hope you get this sorted soon - we are all here for you if you need to talk about it.

Yes- think going straight to A&E next time it happens is a good plan too. Poor you, you must be so worried. I really hope everything is ok.

Do you have a breathing monitor? I wonder if it's worth buying one in case it happens during the night next time so you can take her to A&E there and then?

I don't want to worry you but it does sound very very unusual and clearly your gp is concerned too.

I may be waaaay off (am not a doctor or any medical expert) but my sister had a friend in primary school who's hands and feet did this, spreading up her arms and legs. It was called reynauds (I think). It was not dangerous I don't think. She used to just wear gloves and was allowed inside to sit near the radiator sometimes at playtime. As I said, I have no idea about these things but just wanted to reassure you that although you of course must get it diagnosed, it may not be so scary once you do.

Raynaud's. Clever toddlerama. That does sound like a possible cause, mummytopebs. I wonder if it is? I've met quite a few people with Reynaud's and they live completely normal lives. Just have to avoid getting very cold.

Hi again
Just picking up on what toddlerama said - I suffer with Reynauds Phenomenon - it affects my fingers and toes and they initially go white and then turn blue. They feel really numb - it normally happens more in winter. No-one knows why this happens - I've not even had it diagnosed by a doctor - I just know what it is as I learned about it at college.
It didn't initially come to mind as it only happens to my extremities, but it is a possibility I suppose? Perhaps it is more extreme as she is so little?
I would still definitely get it checked out if it happens again though.

yy- would still go to A&E next time it happens. And maybe even back to the GP to raise the possibility of Reynaud's as well.

The larger hospital is not a childrens hospital but has a large cgildrens dept, it is around 30 min drive away. Are you allowed to go to any a and e, or will they send me to my local hospital?

Raynards was mentioned but my gp does not think it is that as her arm goes black, i have a picture on my phone where her hand looks like a burnt bit of tree or something. She did have a heart scan which local hosp said ok but my gp wants her to have another one

yes just turn up and the A&E if she's having another episode

You can go to the other A&E. The heart scan can be difficult to do on a wriggly 4 month old so a second opinion would be a good idea I think. Sorry that you're so worried.

I am going to drive her there tomorrow if her feet are white when she wakes up. I am scared for her, keep watching her breath

Hope you will get some answers and reassurance soon. I'm sure you can go to any A&E.

Have they taken her blood pressure at all mummytopeps? In both her arms?

mummytopebs - how is she today - are you going to take her along to the big A&E?

I dont know what to do she was a strange colour when she woke and it took 12 seconds for the blood to return to her foot when i pressed it. she has pinked up again now, i think it is happening more when she is laid flat.

I am taking her to the gp just laid her flat for 5 mins and her hands went freezing and blue, they were pink and warm when she was in her bouncer

Good luck @GP.