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?

Yeah, we had similar drops.

But I'm not a health professional- so I can't offer much more than sympathy. junior grew up well and strong, if that is reassurance.

yes it is... I am being told that I shouldnt worry by some people and that its awful by others. Just dont know what to do!
Thanks for replying

it was 'just' a feeding issue for us. I had a big drop early on with Dd, and a big drop (to 0.04) with DS at about 15weeks

Some pretty dark weepy weeks, but by 6-7 months they were back to chubby and fine.

I also get a bit upset at the pics of the time. at the time
I didn't 'see' how thin they'd got.

my guess would be that the respiratory infection that preceded the bronchiolitis would have made it hard for her to suck.

I'd keep feeding her all the time ( take her to bed with you with both of you naked to encourage her to feed more).

Go back to the docs to rule out dehydration and watch out for excessive sleepiness.

Brochi makes feeding very difficult for babies. Ds ended up being fed via a ng tube the first time he had it and has lost quite a bit of weight each time, but he has bounced back each time and has sat on or around the 9th centile since birth.

He is now 13 months old and perfectly happy and (other than chest problems) perfectly healthy.

Just to add I agree with pp about regular feeding. Ds found little and often much easier to deal with as he struggled sucking.

Has the problem with formula only happened since she was ill? If so and if you want to use formula keep trying as it may be easier as her chest clears. Or you could try a different brand.

Keep an eye out for regular wet Nappies to make sure there is no dehydration.

Hi,

Be v careful with bronchiolitis! Our 5 week old son is just home from hospital where he was in intensive care with suspected bronchiolitis. He did not have it (or not typically, anyway) but 80% of the PICU beds were bronchiolitis patients (most with a virus called RSV).

I think the weight drop is very scary and cannot believe you are not being taken seriously. I would insist on being under the close monitoring of a paediatrician. Keep a real eye on her hydration (skin colour, blotchiness and sunken fontanelle are signs to look out for)and her breathing (breathing rate>50/min, flared nostrils, chest recession). I am rather paranoid at the moment (obviously) but, with little ones, they go downhill quickly so better safe than sorry. The upside is that they recover quickly too.

Also, get the paediatrician to investigate reflux. It is a common cause of weight loss. Our first son had it and ended on 0.4th centile. It is relatively easily treatable with food stabilisers and antacids but does make it hard to get weight gain until they are more vertical and eating solids.

Larry the paranoia gets better but not much! Or at least not in the first 12 months. Ds was also a very serious case of bronchi and much worse than average every time he has a cold it's so hard not to panic!

Hope your son is better soon x

Can you insist on seeing a private paed? Sometimes hospital staff are great - but sometimes as the visits are one off they don't provide the best continuous care. I would feel more comfortable seeing a paed who was charged with being responsible for getting this baby better IYSWIM.

Sirzy,

Thanks for the kind thoughts.

The bizarre thing is he did not have bronchiolitis really. He was fine at 9AM and popped out with my wife and 18 month old to a play cafe. He came back midday and his cry was just far from right. His colour was terrible and breathing strained. By 1PM he was in A&E and there was the chilling sight of several doctors clustered around him, getting lines in and putting a crash call in to the ICU, as his blood gases were deteriorating even rehydrated and on oxygen. He then spent a day struggling on CPAP (high pressure oxygen) and narrowly avoided being on a respirator. Then, almost miraculously, within 48/73 hours, everything returned to normal. He went in on the 22nd, out of PICU to observation on 24th and home on boxing day. Every test was negative and they finally wrote "sepsis" on the diagnosis, but I think it was just a guess as he never had a fever nor any other sign of sepsis except for the respiratory distress.

I am not sure if that make is worse or better. Great that he recovered so quickly but, with no meaningful diagnosis, there is always the worry it could happen again.

Showdown,

I completely agree with you re the private paed. I am hesitant to suggest them as they are hideously expensive. The one our son saw for reflux was £250 for the first appointemnt and £150 each subsequent one. If you can afford it, though, it is definitely the way ahead. You get a full calm 30 min exam and discussion and onward referral if necessary.

Sounds very much like Harry, he was 5 days on cpap though and close to being rushed to alder hey for ventilation. He was RSV positive though. Scary how quickly things can deteriorate though.

Sirzy,

Yes, thank god for modern intensive care medicine! The PICU at St George's was amazing, such good care, both technologically and basic kindness and nursing.

sirzy-my lad this time last year was 9 nights in hospital christmas day touch and go and worried if hed make journey to another hospital to be ventilated etc-however boxing day he started to recover.
to champagneanddaisys- try yourself eating sesame halva it boosted my milk supply- keep offering breast tey offering the same breast not altenate then baby gets more good milk- go to bed with baby skin to skin it boosts supply?
i would take her to gp- explain problems and ask to see a paedatrician- i did and they found whole heap of problems/
my son ia also anaemic-maybe your baby is too- it makes them sleepy, pale, also can cause laboured breathing- ask for a blood test.
good luck

I don't know if it is an option for you, but if at all possible I would see a private paediatrician. We use Dr Hay at the Portland Hospital Consulting rooms in London and are very happy with him. We even see him for vaccinations etc just to ensure continuity of care which we never managed to get on the NHS where the left hand didn't know what the right hand was doing and their records were shockingly inaccurate (whole visits were simply not noted in the records, so their was never a complete picture of what was going on). I would if at all possible to contact the Portland in London and see either Hay or one of the other paediatricians. For us it has always been well worth it.

In relation to costs, we are regular customers and are charged about £190 per consultation which depending on the issue can be up to 1 hour. But best to check the cost in advance. Cost of tests comes on top.

i have had problems with the nhs but unfortunately cannot afford to go private- i have however changed hopsitals and paedatricians due to lack of reocrding etc. my son had bronchiolitis december 2009 and bloods were taken etc- he was constantly poorly from then on, doctors everyweek-i eventually got to see a paedatrician from the same hosptial where they found his blood test results- it was april then and they informed me that in decmeber he was very very anaemic! they apologised and sent me away with some iron. things did not improve- another meeting with another paedatrician same hospital- they found they d been reviewing the wrong childs chest xray!
just utter stupidity.
i complained and changed hospitals- they are so much better.
he now is seen every 3 months, has had blood trests, cystic fibrosis test,allergy tests chest xrays, i get a write up after each consultation, review his medicines etc
dont stand for rubbish!!

If private paed isn't an option financially, then surely if you jump up and down enough (hello, my child is chronically unwell...) you should be able to be referred to a paed through the nhs?

champagne - has she struggled to gain all along or just recently? Did they do any tests when she was in with bronchiolitis?

We have been so lucky, my experiences of nhs with Harry have been nothing but outstanding. Put hospital has a peads a and e and outpatients so all the staff are specialists in kids which makes such a difference. After his second admission at 4 months we were spent to outpatients who see him every 2 months to monitor his asthma. Everytime we have been to a and e they have took us through to resus or cubicles straight away deepening what was needed.

My only problem has been with gps and I think that comes to lack of peads experience.

Champagne how often does she feed? When I was concerned about DD dropping down the centiles I fed her every 2 hours, plus more if she asked for it. I did this for a few days.

Think you need some RL help though. Is there a bfing counsellor local to you that you could talk to? Alternatively, I'd call one of the Bfing Helplines.

Also, do you mix with other Bfing Mums? Is there a group local to you that you could go along too? Mixing with other Bfing Mums can often help to put your mind at rest.

you must insist on a referral to a consultant paediatrician and a paediatric dietician

that degree of weight loss is very worrying, even with your baby's recent illness

larry, what a horridly frightening time you had over xmas, hope ds is ok now

Agree with AnyFucker. Insisting on a referral is really good advice. You need to rule out any health problems that could be causing the weight loss.

Personally, not a fan of the Portland for private paeds, though many speak well of them on here. When we were really worried about our first son with his reflux, we phoned them up to discuss and make an appointment and the first question was "how are you paying". The fact that these highly qualified people are prepared to give routine vaccinations also leads me to slightly question their motivation. This is a nurse's job unless your only interest is the cash.

During our appointment, the paed poked our 3 month son rather like a vet examining an animal, without talking to him or looking at him, and instantly told my wife to cut out all dairy (not the problem at all). We instantly cut him out!

As we are in SW london we ended up with a lovely guy called Dwight Lindo who is not only a lecturer in neonates at St Georges but also has a lovely bedside manner with both parents and children. If you are hereabouts, I would really recommend him.

In any event, the OP's daughter needs some real professional paediatric care. I hope the OP is still about.

Hi sorry, everythings so mad at the moment!

DD was born little early ( 3 weeks ) without any suck reflex.
She was a very good weight at birth but soon dropped and by the time the midwifes took any notice of me saying there was sumthing not right it was too late and she had to go to SCBU and be fed through GI tube for two weeks.

She is under the care of a paeditrician at out local hospital.

Im soo unhappy with the level of care she has recieved, at birth she was tested for prada willi syndrome because of her lack of suck and weak cry. We were told a little about what this may meen for her future if she had it, then told not to worry as the tests would take three weeks to come back! (as if you cant worry!)

after 3 weeks i started phoning the hospital every couple of days and was consistantly told they had no results.

Then a couple of weeks ago she was admitted due to a suspected infection that they thought was causing her to stop breathing.... was so scary.
Anyway they then told us they had had had the results for 4 weeks! they were negative so they didnt think it was important to let us know!!

She has since then had more tests to try to get to the bottom of her sucking problems they are testing for all kinds of things, but seem very reluctant to go into details.

the thing is when i took her back to the doctors last week they dont seem very bothered atal about her breathing problems or all the weight loss. Got the diagnosis of bronci and was told it would get better of its own acord.

Its not getting better tho, she is wheezing and not feeding much atal. I also think she may have lost more weight, although cant be sure as all the clinics are shut for christmas.

Tried to get her a doctors apointment today but they are also shut..

What would you do in our situation?

going private isnt realy a viable option for us we have just moved house and things are quiet tight.

Sorry for such a long post!

I would write a list of questions/concerns and refuse to leave your next appointment until you had answers and ask for second opinions/referral to other hospitals if needed.

re the bronchi it does get better on its own accord in the vast majority of cases and the wheeze is normal for a couple of weeks. As long as she isn't working hard at her breathing I would try not to worry to much about that - but of course any struggle to breath then straight to the drs/a and e.

For babies without feeding problems bronchi can cause feeding problems so I would be more concerned about that than the wheeze at the moment.

Hope you get it sorted soon xx