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

How did you get on at the GP? Thinking of you - it must be so stressful for you x

How did you get on?

If you don't get an answer then keep going back to GP or to the hospital.

Hope you are both ok

Hope everything is OK.

I used to work in A&E and I would rarely advise people to go there because there are more appropriate places, but in your case I would absolutely go to A&E if any further incidences happened. It does not sound like Renauds disease, but could be more to do with the heart. Going to a major A&E will also short circuit the referral process.

Hi we went to the gp and got send to the childrens ward at the larger hospital. She has had a scan on her heart and the structure and valves seem ok, the change in colour is really apparent now after every feed. She has a feed and then if you lay her down the colour change is unreal, her arms and legs start to kind of mottle, but not mottle red they mottle a blue colour, worse on the left hand side but apparent all over her body now and the doctor at the hospital yesterday even noticed her left nipple goes blue.

They tested her sats and blood pressure on all her limbs and all were fine so the blood is getting to them so she is going to see a cardiologist in 2 weeks

All the best to you. Hope all goes well at the cardiologist.

He couldnt not really the amount of pictures i have on my phone. I am just worried to lie her flat and have been putting her next to bed with me resting on my arm so she is not laid completly flat. Also we are going on holiday next week so am scared about that, the hospital said we were ok to go though

Thanks for posting again. So it sounds like the structure of her heart is doing ok - that's good news. It's very strange isn't it - hope you get some answers at your appointment.

Yeah structure ok so something to do wthe the blood flow or vessels it looks like, she is the happiest little baby to she hardly ever cries

Thank God your GP took you seriously. Bet he was taken aback by your photos. Hope everything is OK for the future for you and babe. xx

There seems bo be something seriously wrong up with her circulation and I wouldn't wait a day to take her to the best hospital in 100mile radius and march straight in to A&E. [tres pushy mum that I am but only the best would do for my darlings]They can't turn you away.....

Glad to hear that all is ok with her heart structure/blood pressure. That must be reassuring for you.

Could you use a wedge to prop her up in her cot at night, or keep her in a bouncer or anything that is keeping her head elevated as much as possible?

Or carry her around in a sling so she is upright?

I second what the others said - definitely get straight back to A&E if you are at all worried or if she appears to be getting worse. Don't even hesitate for a second.

Hope you can enjoy your holiday x

Is she reacting to something in a formula?

don't wait to see someone, either take her to A&E or ask to be referred to a cardiologist and get everything checked out properly.

Dont think it is anything to do with formula as it can happen anytime but especially after feeds, but interesting suppose it could be an allergy of some kind.

Lira 14 we have been referred to cardiologist we go in 2 week.

We are off on hol tomorrow but i have googled the nearest hosp to where we are staying and its only 12 mile, also my friend i am going with is a nurse so feel more reassured about going

I hope you get some answers from the cardiologist one way or another mummytopeps. If it does turn out to be heart related please give me a shout as I have experience - dd has heart problems.

It was your dd that had the calcium thing wasn't it? Did that settle down and could this be related?

Well back from hols and no major incidents thankfully. What i have noticed is when we were away it wasent as bad as she was being carried a lot and not laid down and playing. When we have come back and she is laying down playing it has come back.

Saggar yes she did have high calcium in her blood which at the lasr test was at a normal level, but i will mention this to the cardiologist.

Unfortunatly i have googled and she seems to have most of the symptoms of constructed heart failure as she changes colour, swells, tongue goes blue, sweats when she is asleep, feeds badly and has only put on 4 lb since birth and has dropped 2 lines. Saggar what heart probs does your dd have, and what were the symptoms?

I will throw something into the mix...could it be (related to) reflux?

My DDs spent 3 months in NICU as they were prem. Whilst they were there there was another baby that would keep having episodes of bradycardia (slow heart rate) when laying flat after a feed, which would then lead to a reduction in SATS (amount of oxygen in blood), which makes them turn blue. Now Bradycardia is predominantly a prem thing , and I don't necessarily think that exactly this is happening here...this was happening because some milk was travelling from the foodpipe into the windpipe and stopping him from getting air and therefore oxygen into the lungs. He was much better when he was held upright after a feed and ultimately prescribed anti-reflux meds like domperidone and omeprazole to cure the reflux and it stopped happening.

Now there are some clear differences in your case - your baby (I assume) was not prem, and it is only the limbs whcih are becoming discoloured (whereas this little boy was completely blue)...but laying horizontal after a feed being linked with the symptoms just ring a lot of similarities in cause if not severity.

I have just read back my post a realised that it sounds quite scarey.

What i want for you to take from it is that it could be "simple" reflux, which is transient, and v easiliy treated...and a lot lot less scarey than the potential heart concerned which are being suggested ATM.

Mummytopebs -

I've responded to a thread about this recently, but I don't think it was yours. I also started a thread about this about 18 months ago when my DD2 was about 8 months old. So it's not totally unheard of.

She had exactly the same thing as you describe (but not the symptoms consistent with heart problems). And her symptoms were more apparent after she had been feeding. I took her to A&E when her lips started to turn blue. We were admitted overnight and they checked her heart, blood pressures in hands and feet and monitored her sats overnight. Everything was fine.

Ultimately the consultant and the paediatrician we saw for a follow-up agreed that it was just an unusual response to stress or cold. Her blood vessels were dilating and constricting more dramatically than they should (she would also have very pink hands and feet when they warmed up). They said the blueness would be more pronounced after feeding because blood rushes to the stomach to help digestion.

They said this wouldn't cause her any discomfort and she may well grow out of it. The likened it to Reynaud's, but this is not diagnosed in babies.

She is now 2 and her symptoms have gradually reduced and are now virtually non-existent.

You obviously need to get all of the checks done, especially if you are concerned about other symptoms. But hopefully this offers some reassurance. I can remember how worried I was when I couldn't find out anything about her symptoms.

Just searched for the other thread so that I could link to it for you and realised it was your original thread. So you already know what I've got to say!

Started the new thread as her condition got worse and she changes colour dramatically. Raynards was mentioned by a consultant at hospital but another dismissed it as her limbs turn black and she doesnt have to be cold etc, i have a picture of her when it was 25 degrees when she was grey all day.

Interesting about the reflux thing, hadnt thought of that as she is not in pain with her tummy or not sick, my friend who is a nurse said to mention to cardiologist that it might me something to do with her wind pipe though as she doesnt really hold her upright and quite often has her necl bent (her natural stance when sitting is looking at her feet)