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 is she this morning mtp?

I am fuming with my local hospital. I was just about to make a gp appt for dd this morning when the consultant who had seen myy dd previously rang me and said my gp had been in touch re the photos on my phone and could i take dd in to the hosp this morning.

The consultant (who i have had previous disagreements with) seemed to not listen to me again and blamed the colour change on weather (even though i have a picture of her in 25 degrees heat totally grey), and also 'the way parents hold their children'!!!!! He said if you are on crutches your hands go a funny colour and this is what happens to babies. I asked him if he could repeat the heart scan and he said there was no need. He did do about 6 blood tests to check for autoimmune diseases. I said have you ever seen a babies limbs go black or swell to double the size? He said no, there is a condition but very rare and he has never seen it in children in his 30 years of practising, only in adults, so he said it wont be that.

Anyway when dd was getting her bloods took i was talking to the ward sister who was taking them, she has saw the photos and was dd nurse when her arm went black. She shut the door and said i would get a second opinion, i said we have got appt at james cook next week and she said make sure you keep it.

So i am now fuming that this consultant at our local hospital disbelieves me arrrrrgh.

Rant over and breath

Saggar she is still poorly yoday but we were on hol last week with friends and she has just rang to say her baby has come down with chicken pox, so might be the beginning of that. I need a drink.

I would have been tempted to stay put and asked to see someone else. His behaviour was terrible! What sort of consultant was he? The behaviour of the nurse makes me think that this is not the first time he has acted like this (though you know that already based y=on your previous interactions with him).

When is your appointment at James Cook? I would not be leaving there without proper information/tests/diagnosis/whatever. Do not let them fob you off.

God I hate the arrogance of some consultants/doctors. I hope you get better answers from the other appt, Mummytopebs - your DD needs you to keep pushing. One consultant's arrogance should not stop you from getting the help your DD needs - there will be a doctor who can help.

Good luck with it all.

Really feel for you mummytopebs - I had a much less serious but equally frustrating experience with my son who had a cough for 7 months - each time I went to the GP they said "it will go away".

It was not until he was admitted to hospital with gastroenteritis that I could speak to a paediatrician who said that it was absolutely not right that he should have a cough for so long.

It makes me very angry sometimes, especially when it is a baby.

Are there any paediatricians on Mumsnet? Or anyone who knows of a top one in the country?

You seem like a wonderful mummy and you are doing the absolute best for your child .

It is bloody annoying - my Dniece was unwell for 3 months prior to diagnosis - my sis was told it was teething, tonsilitis, her being neurotic, teething, an ear infection, tonsilitis, not a fit unless we see it, teething - it was a brain tumour. She didn't get any sensible responses until she took DNiece up to University College Hospital Paediatric A&E - they sent her to Kings College Hospital as they had no beds - she had the 1st op the next day and the main one 2 days later. She was 21mo.

My sis nearly didn't take her back to the docs because she was fed up with the eye-rolling and "it's probably a virus, it will go away" responses - she started to think she was being neurotic. She wasn't. Dniece fine now - still checked annually but she is 5 and doing well.

You would think in a baby that can't talk they would just do every test under the sun even if it was just to rule things out?

Hi really sorry you'r not getting any where i havent got anything constrtive to add just wanted to let you know that i was born with black hands and feet and it continued to come and go.

As far as i know they never got to the bottom of it but i am know a healthy 28 yr old with a DS and it stoped by the time i was one so theres hope that it might clear up soon.

I would trust your instincs and ask your gp if you can book and choose then you can go to another hospital

My experience tells me that doctors go either way: I meet some who say that a mother knows best, if you think something is wrong, then it is wrong, they ask your opinions and actually talk to you. Others seem to think that all mothers are paranoid hypercondriacs who love nothing more than to worry about thir child and spend all day in the doctors waiting room.

mtp - I'm glad she got seen today even if it was by the crappy consultant.

Frankly I could write a book about that sort of doctor. I have dd's medical notes and they are littered with references to me as a 'tired, over anxious mother'. No shit sherlock - I had two under fives and a baby dd who was just about as sick as they come and no-one was listening. The day before she went into cardiogenic shock a tosspot student doctor told me she had a 'touch of bronchiolitis'. He barely stopped short of patting me on the head before he sent me away. It makes me so angry.

Hope she doesn't get chickenpox mtp, she really doesn't need anything else does she, poor mite. I'm glad that your GP is on side though; he's obviously concerned. Was it this consultant who referred you to cardio? Why did he do that if he's so confident that the echo is OK? I think, if you get the all clear from cardio and it's no better then you need to speak with your GP about getting a second paed opinion.

Saggar the consultant didnt refer her, my gp referred her, the consultant i saw today had discharged her but my gp had phoned him up and said she shouldnt have been discharged

i've been watching your thread with both interest and concern mtp. I'm fuming at this 'there is a condition but very rare and he has never seen it in children in his 30 years of practising, only in adults, so he said it wont be that.' For goodness sake - thats the definition of rare - why couldnt it be that? Makes me so mad. My dads treatable condition was diagnosed too late because it was 'unlikely to be that - its too rare'. Please carry on what you're doing and push and push. You really have to do that to get somewhere unfortunately. Definately a second opinion needed.

Hi Pixie

Yes he is fine now - he was prescribed a ventolin inhaler with the face mask contraption and was seen at a follow up appointment.

He did get a lot better after I gave his bedroom a deep clean - they say it is probably asthma but they can't give a proper diagnosis until over the age of 2.

He also had reflux at the time which may have aggravated the cough.

mtp - please be persistent like the others have said and I'm sure you will eventually get the answers you deserve.

I am being persistent today has just made me more determined.

I am going to try and get the photos from my phone on to the computer tomorrow so that i have a copy, so if i manage i will try and upload them on here and you can look at the pics and decided wether the mnetters think i am right to not be happy with the consultants response

I apologise for my rather ranty post last night mtp. I was a bit on your behalf. I'm not usually so sweary.

Pixie - yes I have blogged the abridged version of dd's story. the link is on my profile.

Tuesday is not far away now. Do you know who you are seeing? You could e-mail your photos over before you go. Give the consultant's secretary a call, explain and ask for the e-mail address.

mtp - I'm also feeling so on your behalf. Some hcps make me so mad. I'm interested to see you've been referred to James Cook. We also live around here, your district hospital isn't Scarborough by any chance?

Right ladies i think i have uploaded some photos in my photos if you click on me. You will have to try and see if it works because i am not very technical.

Saggar good idea about the email address i will ring the secretary monday

mummytopebs Have been watching this for a while and I am shocked but not surprised by the consultants attitude. You are doing every thing right, you are keeping a diary, taking photos and logging everything of interest to your DD. You would think the consultant would be glad you were so organised. To be fobbed off as a 'nuerotic mother' and the like is insulting and makes this time even more stressful for you.
I really hope your next appointment goes better and if I was you I would be prepared to spend the whole day there and not leave until you got some answers.

Can't click on your profile so it must be set to private

I have taken the private setting off

nope still cant access your profile

ok just looking now

I posted on your other thread. It's very scary.
Glad it's getting sorted.

On most of those pics I think that your dd looks like a lot of babies who can change colour quite a lot without any underlying abormality however I am shocked by the photo of your dd's blackened hand. I have never seen anything like it.

What happened to that hand over time? How did the colour change from normal to black and then what happened? How long did the whole process take and was she using/moving her hand normally during that time? Is it always that hand that goes black??

It used to be always that hand but as she has got older it is starting to spread to different parts of her body. When it went black she was having a poo it went black for about 3 mins, then deep purple, then slowly back to pink, she was back to pink in about 20 mins.

The swelling worries me the last 2 pics are of her right hand when she was feeding it swelled to twice the size of her other hand.

Generally now she is a white or grey colour, she starts to change to blue when she is laid flat