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

It's interesting that it went black when she was doing a poo. Was she straining? If so it is likely that she was unwittingly performing what is called a Valsalva manouvere which causes significant changes to the blood pressure. Do not worry about the fact that she was doing this (after all most of us do it every day!) but I would make a point of mentioning this to the doc who sees her at JC.

What other investigations has she had done as well as an echo? I suspect that your daughter is exhibiting a marked degree of normal variation in skin colour caused by underlying changes in vascular tone (how "tense" her blood vessels are for want to of a better easu explanation) however I would think that your daughter should at least have an ECG and a doppler type of ultrasound scan to her arm, particularly this would be useful at the time of the episode.

She has had blood tests done checking for autoimmune things which are not back yet.

I am worried it is her heart as she pants when breathing, she is not very good at feeding, she has to have a rest after each oz of milk, she has dropped 2 lines on her weight chart. Also she sweats lots.

She must have an ECG done, both whilst lying and whilst being propped up. Also she must have a doppler done.

I am concerned that if this isn't a normal variation it could be a condition called thoracic outlet syndrome which is rare and I have never heard of in children but imo it is the thing that needs to be ruled out.

I hope that I have not scared you with this post but I did not want to ignore your concerns.

Hi mummytopebs, I am really about the way the consultant treated you yesterday. I know you have enough on your plate already but I would seriously consider complaining especially if next week's appointment brings dramatically different information. Fingers crossed for you that the doctor on Tuesday has a brain!

Someone mentioned this a while back but don't know whether it was any good as an idea - how about getting one of those foam cot wedges for her, so that she can be laid down without being flat?

this is an overview I am concerned about the possibility of the venous or arterial forms of the condition.
Please read the details relating to the symptoms for these sections and see if you think that they fit your dd.

hth

Anotherdoc one consultant mentioned a syndrome that he has only ever seen in adults but the symptoms are similar, but then dismissed it as he had never heard of it in children, i wonder if this is what you have mentioned.

Are you a doctor?

Was the birth totally straightforward? No forceps or anything?

Anotherdoc i have googled that condition and it is very interesting she does fit all of the symptoms. She always lets out a really loud scream when i lift her head up to put her clothes on as if i am really hurting her, and she screams and crys in pain the whole time she is in the car, and now i am wondering if the seat blet might be hurting her shoulder. Do you think i should write the name down and ask at the hospital on tuesday?

Northerlurker she was born by planned section

Also could they tell this condition by blood tests, as one report mentioned T1 and the doctor has requested this on her bloods, whatever it is!!

I am a doctor and I have never seen this condition in children either but it is possible and I think it needs to be excluded before saying that what your dd is experiencing is a normal variant.

I would definitely ask the consultant about it on Tuesday, ask if it could be this and how can he rule it out.

A blood test would not help in diagnosing TOS.

I definitly will thank you, I googled the condition on children and there are some reports of it so will ask about it.

Gosh mummytopebs. The black one is quite shocking and the swelling too. Hope the consultant is thorough next week and takes on board anotherdoc's suggestion.

Thanks for taking the time to comment anotherdoc; it's very difficult when you know something isn't right but you feel no-one is really taking it seriously.

Aw bless her mummytopebs, she is absolutely beautiful .

I think that if the consultant and a professional here have mentioned a rare condition then you need to get it ruled out.

They may try to brush you off, but it is another thing to tick of the list if nothing comes of it.

This must be sorted.

I'm so glad that you've been given some ideas on here, I can't imagine how stressed you must be feeling. I hope it goes really well and they take it very seriously and get to the bottom of it.

Do take the photos along to the next consultation, if you haven't already,.

Good luck tomorrow mummytopebs.

Write down all your info and questions so you don't forget anything. And ask as much as you like even if you think it's a daft question. Let us know how you get on.

Will let you know, it couldnt come soon enough for me, her rib on the left hand side has really been sticking out today if she hadnt had her appt tommorrow I would have took her to hospital. I have wrote down everything and have my photos ready to take.

How did it go? Hope you are coping okay.

Back from hospital and no further forward. It wasent the cardiologist who she saw it was another consultant paeditrician who once again said not sure.

She has now referred her to a cardiologist who will be in touch to arrange more heart tests. She said she is not overly concerned as dd seems so fit and well, she had a chest x ray as the swelling concerned her. She said if she had to diagnose, if it wasent the heart she would diagnose as manequin baby?? This is a condition that can make a baby change colour for no apparent reason, but she is unsure as this doesnt usually cause swelling.

So guess its just sit tight and wait for yet another appt. At least she did the chest x ray so will be able to see heart is not enlarged

How utterly frustrating, how long did she think it would be before you see the cardiologist?

Harlequin baby is what she would have said.

Did you show her the pictures or suggest thoracic outlet syndrome?

Oh blimey mtp. I was hopeful you'd get some answers today.

Could the paed have said harlequin not mannequin? DO NOT GOOGLE HARLEQUIN BABY - this is not what she means and some photos are not nice - it isn't what pebs has. There is something called a Harlequin colour change (you can google this) which is basically what the first doc said - an immaturity thing which mainly happens in the newborn period. It does sometimes occurs with babies who have heart problems. Glad you got the chest x-ray at least and hope you don't have to wait too long for the cardio appointment. Is it happening just as often?

Oh and if you google harlequin baby then you get some pretty nasty pics but this is because they show pics of harlequin icthyosis which is a totally different thing.