Are your children’s vaccines up to date?

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I am really worried about my baby - any ideas please

233 replies

mummytopebs · 25/05/2010 22:00

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

OP posts:
Are your children’s vaccines up to date?
saggarmakersbottomknocker · 21/04/2011 14:56

Sorry there's a bit missing from my post - it should say 'before or immediately after the subclavian' - there was a link too which I've lost.

I'll pm you mummytopebs. Thinking of you. x

mummytopebs · 21/04/2011 17:58

Hi Saggar I havent got a private message from you. And we are supposed to be going to spain, do you think this is likely as I am supposed to be getting mine and dd passport saturday and dont want to waste £200 if dont need them. Do you think they will let her go? Will the pressure in the plane effect her heart? How much would insurance be for heart problems?

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littleshinyone · 08/08/2011 19:42

We;re still thinking of you and Pebs.
Have you had any more progress?

mummytopebs · 11/08/2011 23:23

Hi Littleshinyone thanks for your concern x

Still no further forward I am afraid. They did think it was her heart cos the mri showed an abnormality, they then did a ct scan which showed normal!!! So they have ruled out the heart and think it is a blood vessel problem. She has had a good few months colour change wise as she is on prophlactic antibiotics for infections and also nifedipine and also the weather has been warmer which helps leaps and bounds.

Her consultant has had a 12 month old boy referred to him with the same symptoms and has also found a little girl in germany and 1 in canada with the same symptoms, none have diagnoses.

DD has started having frequent uti's and more worryingly food allergys, so we are waiting to see the allergy clinic but have been prescribed an epipen as her face and lips swell severly. So still no further forward but she is getting very well looked after.

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youarekidding · 12/08/2011 00:05

Oh mummytopebs Just seen this and thought I recognised the name. I have seen you on the allergy boards.

Hope you get some answers soon. Sad

littleshinyone · 12/08/2011 08:14

you are dealing with so much.
i really can't think of how to say 'well done, stay strong' without it sounding bland.

we'll be checking in to see how things go.

Xx

StealthPolarBear · 12/08/2011 08:33

glad she is being well looked after biut sorry you are no further forward. I have read this thread from the start, have not had anything to add but thinking about you

littleshinyone · 08/03/2012 12:52

Hi again.

happy new year (!)

I've been keeping an eye from afar, have you had any progress with either of your girls mummytopebs?

wishing you well!!! (now the warmer weather is finally coming, maybe??)

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