8 year old with persistent cough, losing weight

[Kialla]

8 year old DD suddenly developed a strong cough 4 weeks ago. She wasn't ill in any way, no cold, temperature or other virus symptoms.

She's typically very healthy, rarely gets a sniffle.

We gave calpol, cough medicine and throat sweeties. It very quickly affected her sleep and she hasn't been able to get to sleep before 10pm since it started and then is awake throughout the night coughing before being up for the day at around 6am. She's completely exhausted, pale and losing weight, her appetite has reduced and she picks at even her favourite food. She's always been slim but I can clearly see her ribs now. I just gave her a bowl of custard for lunch in the hope of getting some calories into her and she ate about 3 spoonfuls.

We saw a nurse last week (an appointment given very grudgingly) who said her chest was clear with no crackles or wheeze. She had no signs of infection and the nurse suspected seasonal allergies, she was prescribed an anti histamine.

She's got worse in the last week, has lost another half kilogram and asked not to go to school today. She would go to school with her leg hanging off so we know she must be feeling pretty rubbish. In the last few days she has said that some food tastes funny.

I'm getting really concerned. I'm waiting for a callback from the doctor which I had to really push for as the receptionist said it was an ongoing issue and therefore not urgent. I wouldn't be surprised if I've been put on the list for the nurse again instead of the GP.

How hard should I be pushing for her to be seen again? The NHS website says that any child with a cough for 3 weeks should be seen by a GP. Our doctors are fantastic but meeting the criteria to be seen seems to be impossible.

Hope she gets better soon. Sorry you and DD were treated so appallingly by that nurse.

Another update.

The inhaler seemed to.gice her some relief for 3 or 4 days and the cough worsened after that. No obvious difference from the antibiotics - they took a full day to get so we had seen some improvement with the inhaler first.

She's had a cold this week so is a bit snotty as well. But still coughing really violently to the point where she has tears in her eyes or vomits. She's coughed up some bloody mucus last night and has lost a little bit more weight (200g).

She's asked not to go to activities and has had 2 days off school this week. Just generally seems miserable.

The doctor had said to take her back if she wasn't getting better so I called today for an appointment. They've grudgingly agreed to see her but warned that we'll have to sit and wait as they will be dealing with urgent cases. I'd already insisted it had to be a doctor and not a nurse.

DH is coming with me because I want a witness this time. We'll ask about things like Ceoliac and TB.

I'm not sure what else they should be doing to know if they are taking it seriously. A referral maybe?

God you've been treated terribly, the NHS is such a postcode lottery. My daughter 14 had a horrible cough and zero appetite for a fortnight and also a temp, Urgent Care were initially dismissive but gave us antibiotics in case bacterial. Didn't shift, so a few days later went A and E and they X-rayed her chest and it was pneumonia - bacterial. 3 different antibiotics at once eventually shifted it.

Push for bloods and an x-ray.

I felt like an angry neurotic mum but I didn't care.

I had similar recently and was referred for a same-day walk-in chest x-ray to eliminate the possibility of pneumonia or abnormalities that might suggest TB.

I know what it's like to lose your ability to advocate in front of a doctor - I often start practically bowing and scraping and pathetically grateful to even be seen so I don't stand up for myself and end up at the end of an appointment kicking myself for not speaking up more.

I'd be making a list of what you're worried about:

• weight loss (x amount over y time)
• antibiotics not making a difference over x period of time and repeated appointments
• bloody mucus
• productive cough
• exhaustion even though plenty of sleep
• "not right in herself"

and then what you'd like them to consider that you're worried it could be:

• TB
• pneumonia
• whooping cough
• coeliac (though it sounds like the cough is now productive)

and then ask what next

• chest x-ray?
• sputum test and culture?
• bloods?

Don’t give up on the antibiotics just yet. baby was on day 10 the day before we flew off for holiday, and on day 8 we still weren’t sure we would make it. The bloody mucus especially still rings pneumonia or mycoplasma alarm bells. Hope you get to the bottom of it, really feel for you all

How did the appointment go OP?

Thank everyone.

She's got new antibiotics for whooping cough (just in case, it's beyond the timescales that she could be tested) and an appointment to get bloods done. Last weeks antibiotics were supposed to be catch-all type but the doctor didn't think there would be any harm in trying these ones.

I mentioned celiac disease as MIL has it so that's one of the things they'll test her blood for.

I did feel that we were taken a bit more seriously today but I still don't feel that there's a clear way forward if these antibiotics don't work.

She asked what I was worried about and I said that I didn't know, but that a sudden cough that has got worse over 6 weeks with weight loss doesn't seem normal.l and DD is miserable. She's not a child who ever wallows when she's poorly so I know she must be feeling bad. In fact, she's never poorly. I don't think she's been at the doctors in at least 4 years.

I also have to keep reminding them that she didn't have a cold or anything before the cough started, it came from nowhere.

When she coughs, its always a huge coughing fit and then she does this odd gulping thing as though she is trying to swallow. She describes a bubble in her throat that she is getting rid of. Sometimes she retches. But she's adamant it's an air bubble and not mucus, not convinced she would really know the difference. But it horrible to witness, it looks like she is really struggling to breathe.

Really, really hope these antibiotics do something. We all need a rest by this point.

DS had a cough that wouldn't go, very tired and listless. He was off school for 4 weeks!

On our 3rd visit to the GP they said it was standard practice after 3 weeks to get a chest X-ray. Turned out he had mycoplasma. He had a couple of doses of IV antibiotics and a further lot of antibiotics at home.

You need them to refer DD for an urgent chest X-ray.

So sorry that you've had such dreadful treatment, my stepdaughter is an intensive care consultant says that you really need to advocate for yourself and your children, she's had problems as well!

There is such a thing as cough variant asthma, did they just give her a blue inhaler or a brown inhaler? It's really hard to control and while the inhalers help to some extent it wasn't until DS was on heavy duty preventive medication and antihistamines that the coughing stopped.

Has the doctors seen her coughing? Might be worth filming her if she'll let you, it may help them with a diagnosis if they haven't seen it.
If the antibiotics don't work an x-ray needs to be done to rule anything else out first but then a pediatric refural if it doesn't clear up. And yes with both DS and my friends daughter this came on suddenly with no previous symptoms. At different ages in both cases.

Good luck I hope you manage to get to the bottom of it.

The inhaler seemed to give her some relief for 3 or 4 days and the cough worsened after that

@Kialla you said this in you previous post, can I ask was this the blus inhaler? How often where you using it? Because DS can empty a blue inhaler in 1 day when he is really bad. Taking 2 puffs every hour even just during the day will empty a blue inhaler in 4 days (they only hold 100 puffs of active ingredient). The nurse always reminds me they runout of active ingredient before they runout of airishole. It maybe it was actually helping but you emptied the inhaler, once they stop working you need a new one.

If they refuse you a doctor state you want it recorded on her notes that you requested a GP appointment and they refused (always keep a record of your requests at home). They always change their mind when you say you want it recorded.

your poor DD. Sounds horrible. Has she been tested for covid? The funny taste comment made me wonder if it could be covid, plus cough, tiredness, lack of appetite. Could be worth getting a test from the chemist perhaps? Hope you get to the bottom of it soon 💐

I'm sorry she's still unwell. Has a doctor witnessed the coughing? If not is it worth videoing it to show them in the hope it shows something? Have you discussed a chest Xray with them?

My son once asked me to take him to the GP. He was only 8 at the time. He knew he didn't feel right. The receptionist told me the GP had no appointments. My son said he wasn't leaving till he saw the GP. The GP saw him and immediately prescribed a big bag of meds. I had so much admiration for my little boy standing firm!

But it's draining how robust you have to be to get an appointment

Go to A & E

As this thread is now my personal record of DDs illness, an update on the attempt to do a blood test yesterday.

Phlebotomy is a centralised service in our town so not part of our surgery.

DD is terrified of needles and medical procedures in general. She screamed for 20 minutes after her last MRR and her covid vaccinations were awful. We had been talking to her about this all week, gently preparing her for what would happen and trying to reassure her that it wouldnt hurt. I knew it was going to be difficult and that I would have to advicate for her.

I put Emla cream on her 40 minutes before the apppintment. When we arrived, we were immediately rushed through and I was told I had to sit across the room, away from DD. I ignored that as I could already see she was starting to lose it. We had a double appointment as standard for children so there was no reason for the rush.

I have had this particular phlebotomist before and remember her being impatient and frustrated when my veins weren't playing ball.

As soon as she started to wipe the cream off DDs arms, she panicked. She was obviously in flight or fight mode and was trying to get out of the room. I've never known her to lose control like this. I cuddled her and tried to calm her down but the nurse was getting really angry and irate so DD was pushing and squirming to get away. She kept talking over me, shouting and trying to grab DD. Her tone was impatient and angry. I asked her several times to let me calm her down and she ignored me

She said some innapropriate things to DD and she spoke to her as though she was being naughty, the things she remembers word for word -

Five year olds get this done without a fuss

There are really sick people outside and they shouldn't have to listen to your screams (not true, the waiting room was empty)

I dont have time for this

You need to stop this and get it done now.

After a few minutes, I said we were leaving. I was on my knees in front of the chair, trying to get DD to calm down enough so that I could tell her we were going home. Another nurse appeared from behind a curtain in the room and said "if you dont let Nurse Name take your blood now, we'll take you to hospital and they will make you do it without magic cream or your Mummy."

That distracted DD enough to pause for a second and the other nurse grabbed her arm and then moved the needle towards her. I had to shout at her to stop and told them that they had terrified my child.

I got her up off the chair and immediately walked out. As we left, the nurse took her gloves off and threw them at the floor.

DD was absolutely distraught, crying and shaking. She's 8, this isn't normal behaviour for her.

Our doctors is in the same building so I went in and asked the receptionist what our options were now, a doctor called me back and offered to do another check up in DD today and to talk to her about the test.

I spoke to the supervisor to make a formal complaint while a receptionist from our surgery drew pictures with DD. The supervisor had already spoken to both phlebotomists and said they were very upset and that they had tried to play good cop, bad cop. There was no good cop in that room, only anger directed at a terrified child. She suggested that we have a few fake appointments to desensitise her to the process but that could take weeks.

I honestly don't know how we will get her to do the test now, she is terrified of seeing the doctor today and was up until 11 last night - she said she kept thinking about it and it made her feel sad. She keeps apologising to us.

The cough is just as bad as ever after a week of antibiotics. I think it's almost 7 weeks now. She's still losing weight, but at a much lower rate. She has good days where she can play and then days where she doesn't want to move from the sofa.

And if I wasn't the one sitting in these appointments, I'd think that it was all an exaggeration. I'm making DH come to every appointment now as a witness.

@Kialla speak to the GP about her struggles with the test. They will have come across this before.

We have a lovely children's service for blood tests at our hospital with a special room and skilled staff who know all the tricks.

My GP prescribes lorazepam for me as I had an awful experience with a blood test and now really struggle with them. She also said they can do the blood test outside in their garden if people get really stressed by them

So many typos, I haven't got the energy to edit them 😔

That’s absolutely horrible to read. I’ve only ever once had to take my child for a blood test and it was at the local hospital in a children’s ward, with a room full of toys and specialised nurses who know all the tricks. Honestly, they were incredible, I don’t think he even noticed. One of them distracted him with an iPad and the other did the blood test with his arm behind my back. Granted, he was a lot younger and your daughter would be more aware, but I’ve never known children’s blood tests be done in the same place as adults’ (we know children now he’s older who have had to have them).

Your poor daughter. Nurses were appalling, never heard anything like it. Well done for advocating for your daughter so well.
Absolutely formal complaint (if you have the energy).
Still keep chasing as to what can be done.

Ask the doctor if the local children's hospital have a phlebotomy service. My DD has a needle phobia as the result of a similar situation. The local paediatric outpatients team were great - they are so patient and used to dealing with stressed children. They also have play therapists who distract and chat during the test if needed, while talking through everything that happened so no surprises. And explaining to your dd that what the nurses did was wrong and you have complained will help.

Our local standard phlebotomy service don't see primary age or below any more - perhaps because of things like this!

Do you have any friends/relatives who are able to take the blood for you which you could then run up to your local pathology lab?
I have done this several times for friends children at either my house or theirs - you would need the form - maybe a more normal setting might help. {I am ex nurse who’s also done phlebotomy at a children’s hospital and currently work in GP land)

Going to a peadiatric department at hospital is definitely an option available to us, I asked the GP yesterday. I'm just not sure what the timescales might be for that.

My concern is really that yesterday's attempt was so traumatic that she will lose control before anyone gets to even try more gentle techniques. She had no control of herself yesterday at all and the threat about being taken to hospital without me is really bothering her. Obviously we've told her that would never happen.

The GP plans to check her over again today and talk to her about the test so she'll be able to see how she responds.

Unfortunately not, because that would be a really good option.