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

So glad to hear you are being taken seriously. I am currently seeing different consultants with my two DSs (aged 2.4 and 6 months) as one may have sleep apnoea and the other is anaemic and losing weight (possibly due to a food intolerance). I've been following your journey to get your DD the help that she needs and feel I have some idea of your frustrations. I am sure I have 'fussy mother' scrawled all over the notes for both DSs, and yet I know something is wrong with both of them! I am finally getting somewhere too, due to DS1's bloods showing the anaemia, and DS2 not breathing when DH picked him up the other night. It's taking months and I constantly feel like i have to justify myself.

Anyway, sorry for the hijack, but wanted to say that I'm pleased that people are now listening and I hope the original consultant will eventually get the bollocking he deserves. The registrar we first told about the sleep apnoea told us the monitor was rubbish and we should just turn it off. Thank God we didn't! Keep going with your efforts and I look forward to hearing how you get on. Good luck to your DD.

I know exactly how you feel Bethy, that was the problem with the original consultant that my dd got referred to. I had had issues with him with my other daughter as she was always ill when she was a baby and i pushed for him to do more tests as he was just happy to leave her being in hospital about 20 times in a year!!!!

When my baby got referred to him he actually said i dont want to put your baby through unnecessary tests like your older daughter had!!!! Urrrm its a different child, with totally different symptoms and the tests my eldest had werent unneccesary as she was put on long term antibiotics to stop her getting recurrent infections for 2 years. He really makes me angry. It is pathetic that doctors view mothers as neurotic especially when there is evidence that a child is poorly

Sounds like that man should be struck off!

I think if you have more than one child with a health problem the assumption is that actually the mother has munchausen's (or whatever it is now called), not the misfortune to be trying to manage the care of two poorly children!

Just an update. Well i cant say they are not taking us seriusly now because dd is having thoasands of tests :(

We went for our outpatients appt and we got kept in, we have been in newcastle hospital for 7 days, they have let us home for the weekend then we have to go back in monday to friday.

The consultants think it may be a new condition and are therefore very excited, whilst i feel my baby is being used as some kind of guinea pig. They think she has some kind of blood clotting problem, they have found something in one of the tests that shows her blood clots to easy, they have tried to repeat the test 3 times but each time the blood has clotted in the tube before they get it to the lab!!

They also think she has a blood vessel condition but they are very confused as her body seems to be turning on itself at certain temps and shutting the vessels down.

We have a long week ahead of more tests and they are giving her a general next week sometime and injecting dye in her body then scanning her. I feel its a long road ahead but am glad she is now being taken seriously even though i am papping myself

I've just read the whole thread and just wanted to add some support. I can't imagine what you must be going through. Must be hard that the doctors are excited about your DD being ill, but at least it's being tackled now.

Good luck with all that's to come

I have been following your thread from the beginning. I am so glad that you have been taken seriously at last but so, so sorry that dd is having to undergo so many tests.

I hope that very soon you get a diagnosis and go onto active treatment. Then I hope you can start action against the first consultant.

All the best to you, dd and all your family. x

I really feel for you - been following this and just want to say you are doing brilliantly. You don't seem over anxious to me at all, just quite rightly concerned about your child!

Good luck

Followed this before but didn't post, bittersweet news really, you're being proven right that there is something wrong but obviously you wanted nothing wrong. At least they are kern to find out what's wrong & fix it. Good luck

What a worry for you! Good Luck to you and your family x

Thanks for all the support x Just getting ourselves ready for another week away from home. My older dd hasent hardly eaten anything today and has went to bed bourking and saying she feels sick, i dont think she has a bug or anything just really anxious that me and her baby sister arent going to hardly see her for a week :( Its going to be hard leaving her at the school gates tomorrow

Good luck this week mummytopebs. Glad things are moving on at last. I understand how hard it is to leave your other children though.

I hope they get to the bottom of it soon and that it's easily managed and you can all get on with your lives together.

I've just read this whole thread and while I have nothing helpful to say (so sorry) I just wanted to let you know that I'll be thinking of you and praying for you and your dd. Good luck with it all. x

Good luck. Glad you are feeling being listened to and that your DD is being properly investigated. Don't like the guinea pig thing though - I hope they are treating you both with respect. Will think of you all.

Bethylou yes they are treating us with great respect, and keeping us informed every step of the way. Well we are all packed and i am off to bed now so i will come and update you all as soon as we are allowed home again, probably Friday. Thanks again for all the support and prayers x x

What a worry. One of ds2's friends has too many veins which causes swelling and stiffness problems. We are nowhere near London, but he goes to GOSH for his check ups. Would you like me to get the name of the consultant? CAT me anytime- although it does sound as if you are now getting good service.

pop onto thread t get update. Sorry you still dont have answers and hope your bearing up ok.

We are back home for a bit longer this time hopefully. Still no diagnosis, all the first lot of blood tests have come back with nothing and they have decided to leave the test where they were going to give a general and put dye round her body till all the blood tests come back.

She has been sent home on some medication that makes her blood vessels relax and therefore hopefully stops them constricting the blood flow. It took a while to get the dose right as it was sending her bllod pressure to 110 on the bottom and then down to 49 on the bottom, but fingers crossed they have the dose right now. We are going back on the 28th to get all the blood results including the clotting one which seems to be of some importance.

We have been told to keep her warm at all times and i honestly dont know how we are going to afford the heating bills!!! I am due back to work after my maternity leave on thursday and I honestly dont know what to do, dont really want to go back until we have a diagnosis and i know the medicine is working but cant afford to take 3 months unpaid :( Stress is not the word

Hi Mummy. Would little DD be entitled to DLA? Discuss it with your HV. Having to provide additional heating may entitle you to some kind of extra money to cover the costs. Without a diagnosis it may be difficult but not impossible. The huge downside is that it is a lot of work and can be stressful. Maybe a nice parent can do the research for you. It is basically looking at whether DD needs a higher level of care than a child of similar age.

Its a thought though?

Goodness mummytopebs, what a horrible situation for you and your family.

Will your work be understanding/supportive? Is it generally that kind of workplace?

(((Hugs)))

thank you for taking the time to update on here when you've so much on your plate.

I am one of many who read your initial post and watched this progress.

I am delighted you have broken through from the GP and getting the specialists working to help your daughter and family. Hope a diagnosis isn't too long in appearing. Your daughter must feel like a human pincushion.

One of my son's spent 6 months earlier this year being ill and we were in and out of hospital and it's utterly draining on everyone. But hold on in there - it's not forever and somehow you get through it. And accept all the support you can - whatever makes life easier for you.

Good luck and please keep us updated when you can. Wishing your daughter well.

I've also been following your thread with horror. Your poor wee DD and also poor you. I remember the stress of going back to work when dd1 was still in the throes of severe reflux and food intolerances and the stress it caused. My HV wanted to sign me off until we got to the bottom of things and I was feeling a bit more like I was coping. Is this an option for you?

mummytopebs - is she on Captopril (or a similar)? dd is on that family of drugs and her temp can get quite low.

I would try to make a claim for DLA if you can face the forms. You don't need a diagnosis but you will need confirmation form dd's doctors that she needs extra care over and above that normally given to a child of her age.

I'm sorry you've not yet got to the bottom of it but glad that they're persevering.

Hi dd is on niprafen or something like that its little drops we give her, think its used for angina in adults.

She hasent had any dark purple episodes but some light purple ones on it plus her hands have been like ice more than usual but not sure wether that is the weather change or the medication, all the skin is coming off the end of her fingers, they blister then peel because they are so cold. I am sleeping with her on the night as if she is in her cot she is getting to cold, and my house is like a sauna with the heating on.

On the work front I ahve extended my maternity by a month, unfortunatly unpaid but after that they have said to go on the sick if i can no longer afford unpaid. I have been to the citizens advice bureau to see someone and go bcak on wednesday to see an advisor to see if we can get any help with heating, specialist clothes etc.

So now just a waiting game again till we go back to see her little team of consultants she seems to have acrewed next Tuesday. Thanks again for all your support and messages.

Well we are off to the hospital for results tomorrow and i am scared :(