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Children's health

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Original poster

Has anyone had a baby with these symptoms (for want of a better word)

86 replies

strawberrycake · 14/11/2010 19:22

DS is a slow/ poor weight gainer (75th to 2nd centile over 5 months)

diarrhea every day ranging from pale putty to green froth to green/ black to mucus

ongoing cough

ongoing runny nose (clear)

said to allergic to milk

Does anyone have any thoughts? He's happy, pale but so am I.

Am I being a nervous mother or would you think something of this?

OP posts:

Are your children’s vaccines up to date?

Set a reminder

simpson · 14/11/2010 20:35

I am lucky and have a very supportive GP who has helped tremendously although would not prescribe the neocate and said it had to come from the hospital

I guess its all about saving ££££

simpson · 14/11/2010 20:36

Isn't CF tested as a sweat test in the hosp??

I mean not the more common one which is a heel prick test when newborn...

Original poster

strawberrycake · 14/11/2010 20:38

saggar, he has on about 4 occassions gained no weight and lost small amounts other weeks. A sort of 2 steps forward, one back approach to weight gain.

I thought the heel prick was a CF test and identified anyone with it?

OP posts:

Bobbiesmum · 14/11/2010 20:39

I have pm'd you, really hope you get this sorted. Don't be scared of doctors the only difference is we studied for longer at uni than everyone else!

CakeCuresAll · 14/11/2010 20:40

My ds had very similar symptoms but they peaked once he was weaned around 6 months. He dropped right down the page but only due to poor gain not actual loss.

He was BF though and we worked out eventually it was dairy. It's took a month off dairy to see a real improvement. He still won't put on weight but his nappies have reduced to 2 a day and are finally solid.

You really have to keep insisting - politely.

It took me crying in the gp's surgery after being sent again from the HV. My gp was inclined to say HV's fuss over nothing and dismiss them. We saw peads but pretty much worked it out myself in the end.

It is horrible to have this worry with no one taking you seriously though. Hope things soon improve.

BoffinMum · 14/11/2010 20:40

Well everything here seems to point towards seeing a decent paediatrician IMO. It is a very confused and worrying picture and a proper referral with the OP in control will at the very least give her the reassurance she is doing everything she can. Plus the appointment will be for 30-60 minutes, not 4, so she will be able to have a good chat with the specialist and build up a bit more of a relationship so they invest a bit more emotionally in her and her family.

BoffinMum · 14/11/2010 20:41

Not so Bobbie, I studied longer than the lot of you but I can only diagnose essay problems and not diseases LOL

Original poster

strawberrycake · 14/11/2010 20:44

Ok, last time we were in A&E a nurse started shouting at us about time-wasting when there were 'really sick kids' there. After 2 of them made me cry DH shouted back (called them negligent). Have a feeling if we're sent back nurses will recognise us and tell us to f off.

OP posts:

saggarmakersbottomknocker · 14/11/2010 20:45

CF test has been added to the heel prick in the last few years. I believe it tests for the most common forms but not all mutations.

saggarmakersbottomknocker · 14/11/2010 20:46

That's dreadful strawberry. Don't let them put you off going back. Listen to your instincts.

NoSleepTillWeaning · 14/11/2010 20:49

Friends of mine had lots of problems getting their daughter diagnosed (suffering poor gain and diarrhoea due to allergy to millk and soya). On one occasion they were told they would be arrested if they came back to A&E. When sent back the next week to paeds by their GP (after pushing for more help) they were then told they would have social services called in as they should have bought the child back to A&E sooner! Their DD is now 6 and has completely out grown her allergies and is fine.

Do persevere. One of my friend's problems was never seeing the same GP so no-one really picked up on the problems. Do try to always see the same GP if you can.

simpson · 14/11/2010 20:55

DD was given cheese by accident at her private nursery a couple of week ago and 2 days later started so suffer horiffic diarrea (sp)

it is just starting to improve now 8 days later...

Her dietician saw her on Monday (routine appt) and she pooed twice in the 30mins I was with her

The dietician said that her stomach lining will take a good while to recover and it could take 4wks for her to improve.

Original poster

strawberrycake · 14/11/2010 21:02

Arrested? Jesus!

Ours was ridiculous too.

We were given dirty looks from the word go. Left to stand by a desk for an hour. Then told we were blocking corridor and told to go to the main waiting room, not the children's one as they were busy. Trooped off. I did notice he was the ONLY child not weighed or assessed on entry.

After another 2.5 hours when to desk to ask how long to be seen. Polite. Nurse growled soon. 30 Minute later asked how long 'soon' was. Then she started shouting that they were busy with 'really sick kids like asthmatic kids', not like mine who 'could be seen by a GP' rather than wasting time. Other nurse rounded on me too. All the other parents staring (honestly, despite all this wait I was NOT rude or funny, too worried about DS to be arsey, just grateful of anyone saw him). At this point though DH did shout back. Said he'd take his son somewhere were they weren't negligent. Third nurse jumped in (busy, can you tell they were all chatting at the desk) and SCREAMED 'we are not negligent, you are as a parent' (how?). We ended up leaving without being seen in the end as ran out of milk for ds and couldn't stay even if we wanted to, though dh wouldn't anyway. Pead did say as we walked out that ds had a virus.

OP posts:

fannybaws · 14/11/2010 21:06

Hi Op I am sorry you are having such a worrying time with your DS.
If you can afford it I would get a consultation with a private paediatric gastroenterologist.
If you cant afford to do that pester you GP for a referral to the same Dr.
The first route is likely to be a much quicker pathway.
AS for the staff in A & E I would complain in the loudest possible terms to the hospital, if you have thier names all the better. That type of behaviour is not acceptable from any health professional.

BoffinMum · 14/11/2010 21:33

If this happened in the way you have reported here, it is formal complaint territory and really needs sorting out for the sake of yourselves and other patients.

I would recommend doing a grid of each interaction with the NHS in one column, with the date in a second column, and finally a short description of what happened and the name of the person you saw (if you can remember). That way you have a record for yourselves of the medical side of things and the order of events, and a record for the NHS of what is going wrong. You can then send it to PALS at your hospital, with a copy to your MP if you feel so inclined. That usually works a treat and you should find yourselves being taken more seriously and being treated more politely after that.

simpson · 14/11/2010 21:45

strawberrycake - have got your PM and will send out a tin of neocate tomorrow

Agree with others you must push for pead/dietician appt.

Easier said than done I know....

mummytomatildaandrose · 14/11/2010 21:55

Strawberrycake - I haven't had a similar experience to you with your child, but I have experience total incompetency in the last year with GP's & HV's with my DD. She is now delayed developmentally (speaking and walking) all because we were pushed from pillar to post and it was only because we went privately that we had the answer (glue ear - she was almost completely deaf, poor thing!). BUT I have hope now because one GP said to me back in April 'i'm afraid there is nothing that general medicine can do for your DD, have you considered homeopathy' - to which I laughed. Amazingly we have gone down that route and whilst I'm still not 100% convinced, I cannot deny what an enormous difference it has made to my DD. And apparently the younger the child, the more effective homeopathy is. My DD is now 2 and my younger DD is 9 months - amazingly, pretty much all of her problems have been down to teething. Anyway, after all this I guess what I am trying to say is, have you thought about seeing a homeopath rather than getting stuck down the NHS route? I'm so sorry for you though - there is nothing more worrying than a sick child.

Original poster

strawberrycake · 14/11/2010 21:56

BoffinMum, I am not aggressive as a person in anyway and as I said I'm a tad scared of hospitals/ doctors. If anything I acted nervous, not rude in anyway. I literally had one nurse in my face in front of me, then all three in a line shouting as I walked off. One followed me to carry on after DH shouted over his shoulder (couldn't catch up with him) and I told her that her argument was with dh as she was replying to his comment and asked her to back off me (crying as said, I was humiliated) .I didn't know if we could complain though as DH did raise his voice back. I will start recording. In fact I have a good memory for names and dates, I will record all dealings.

Simpson, huge thanks.

OP posts:

Original poster

strawberrycake · 14/11/2010 22:01

I think one of the possible root causes of our treatment is the local issues between eastern european/ black people. A lot of eastern europeans have been racist in their attitudes there and I think looking at our eastern european name/ accents we were presumed trouble before we started. They were having an altercation with a Polish family as we arrived so moods were bad. It's a big source of tension in the school where we work too with fighting in the playground.

(for the record we're not involved ourselves, nor are we of the same nationality of the community that is having problems with this issue)

OP posts:

BoffinMum · 14/11/2010 22:07

Strawberry, all the more reason to complain logically, firmly and without emotion. Because that's the opposite to their dreadful behaviour.

enimod · 15/11/2010 10:01

the heel prick test is not great- i would ask for a sweat test- it is a painless procedure-id also ask for a full blood count- he might be aneamic.

mintyneb · 15/11/2010 11:49

I would agree with enimo. I don't know the full explanation but the heel prick test lookes for certain chemicals in the blood that could indicate if a baby has CF. The baby would then be given a sweat test to confirm the diagnosis and then genetic tests would be carried out to identify the mutations of the CF gene involved (there are over a 1000 mutations of the gene).

It is possible to get a false negative from the heel prick test so based on your DS symptons I think you should push for your GP to organise a sweat test. Fingers crossed though there will be another explanation.

Does your DS taste salty though if you were to give him a kiss of lick his skin? Sounds wierd I know but people with CF do have very salty skin

larrygrylls · 15/11/2010 12:05

StrawberryCake,

Where in London are you?

We used a great private paed called Dwight Lindo. He practises in Kingston hospital. We saw someone at the Portland but really did not like him (his first question was "how are you paying").

simpson · 15/11/2010 12:33

Strawberrycake - I have sent 2 tins of neocate to you today, you may even get them tomorrow.

The only box I had to put them in is a neocate active one (the neocate for older children) but don't worry the neocate inside is from birth iyswim.

It will make sense when you get parcel

Original poster

strawberrycake · 15/11/2010 12:45

Simpson, you are wonderful. Really.

I don't really like to dwell on the cf thoughts.

No GP today as now I'm ill! Will go soon though.

OP posts:

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