drop in weight from 91st to the 0.4th centile

[champagneanddaisys]

My dd is 11 weeks old and has some other health problems.
She is EBF, and has problems choking wenever iv tried formula.

Took her to hospital last week as she had a very high temp and is constantly sleepy and they told diagnosed broncialitus.

The thing is as I have said she has dropped so much in weight im quite worried, she just looks so scrawny compared to other babies her age, she is so pale and always looks ill.

The whole thing is getting me down, the health visitors are no help atal and she sems to be sliping thru the net with the hospital.

Just wanted to know if any of the mumsnetters out there have had these weight problems before?

I agree with Sirzy re 2nd opinion/onward referral - if they are a bit stumped then they should be looking to find more expertise and you shouldn't have to go private to get that expertise.

That's a pretty huge fall through the centiles TBH. Has she had any true weight loss? What is she like when she feeds, does she take much? Is she sicky? What tests have they done?

Sorry - questions, questions - not surprised that you're concerned.

Hi champagne,

I think that your doctor is being remiss to the point of negligence. Your daughter has a host of problems which means she should be very high on his/her priority list.

Normally, hospitals are very good with parents of children. After all, you are the child's legal guardian and have to give consent to any test/procedure they carry out.

However, I really appreciate your problems as you are, in theory, already under the care of a paediatrician, so the doctor will assume that everything that can be done is being done. My own experience of the NHS is that in a crisis they are absolutely wonderful but, as soon as the crisis is over, they seem to be just way too relaxed about ongoing problems. Where are you based? What is the reputation of your hospital paediatric department?

Frannkly, I think that you need to shout a lot louder. Don't worry about annoying people or wasting professionals' time (as some do). Your primary and only responsibility is to your daughter and, from all the feedback you have on here, she has a pressing need of care. Ask your doc to refer you to another hospital which has a reputation in paediatrics and do not take no for an answer. If necessary, tell them that your child has already suffered apnoeas (stopping breathing once) and that if it happens again, you will hold them responsible.

My gut feeling is that you and your daughter need to be in a hospital now to avoid an emergency admission later. Breathlessness and weight loss is a losing spiral. Your baby needs nutrition to deal with his lung issues and she needs to breathe to feed properly.

Sorry for long post.

If necessary, go to A&E at a large hospital with a good reputation and say you are concerned about her breathing and lack of feeding. At least she will get checked out.

i agree- i would take her to a good hospital. if she has a sucking problem and a breathing problem i imagine that she is really working hard- can you see her rib cage- can you see if she is sucking in under her ribs? or around her neck? how amny breaths per minute is she doing?
personally you know your baby the best- and even if you are a first time mum etc- you still know your baby the best and your gut instict will be correct.
i would either ring out of hours doctor or take her to a and e at a different hospital.
i do feel so sorry for you and her-the stress of watching your baby unable to feed properly and breathe properly is horrible.

I think maybe I have not shouted loud enough re the docs, she was in for so long after birth I was just so glad to be alowed home, I just never thought this would be such an ongoing problem.
The last time she was addmited,they mentioned going home when she seemed a bit better and I jumped at the chance. Its been very difficult as my other half has used all his time off and have a 18 month old. I realise now that there is no care as an outpatient and I should have stamped my feet while we were in there.

We live in surrey, Im not to sure about our local hospital. They were very good to us when she was on the childrens ward but then the day that she got bronci, dispite being in the hospital for another apointment of hers they wouldnt accept a referal from there own therapist. Instead I had to go home (45 min in the car) in order to get a referal from the GP!!! (45 min back again!)

Tried again for a docs apointment today but could only see a locum as they had been closed so didnt take it.. Seen them at my surgery before and its totaly useless!

Sagger - she has had some small weight losses, few ounces then she puts few more on, but shes only put on just over a pound since birth. It just dosent seem enough in 12 weeks. She is on reflux meds but they dont seem to make any difference, im not sure she has it to be honest. My other dd did and was nothing like this.

She is having touble with the feeding mostly because she is choking so much. She chokes all the time, even when she is asleep.
I never sleep at the moment im constantly on edge to get her when she starts to go into a choking fit.

Thank you everyone for all the kind words and advice.

mega long post again!!

Hi Champagne,

St George's, tooting, our local hospital, (where my 5 week old was recently) is a centre of excellence for paediatrics, having one of the only paediatric intensive care units in London. Surrey is a big county but it is not too far from some of it (just up the A3). It also has a seperate paediatric A&E department where you will be seen fairly quickly.

If I were you, I would just get in the car and drive there today, before the New Year Weekend rush.

Mention choking and the fact that you feel that she is not breathing sometimes to get taken seriously. I would not mention that you are already somewhere else until asked directly

True weight loss in a baby that old needs more serious investigation. I think larry gives good advice and you should take her somewhere else and shout louder.

My goodness, you asked what you should do and here's what I think you should do.

You need to take her to A + E. There is a children's A + E at Kingston hospital too. Get hysterical/cry whatever you need to do.

Have you tried ringing NHS Direct? I'm sure they would tell you to take her to hospital.

Champagne,

Is everything OK? Did you manage to get some help for your daughter?