Feel like my baby is suffering with his cough

[LittleDidIKnow21]

Hi All,
I'm after some advice and I'm a real worrier of a mum.
My little boy has always been quite chesty ever since he was born. His breathing was always noisy and always sounded like he had so much mucus on his chest.
It's now developed into a constant cough which is day and night. The coughing has started to disturb his sleep and he's now started to vomit due to his coughing spurts. He's trying so hard not to cough and tends to get upset when he has a real coughing fit. The doctors keep telling me it's a viral infection but I'm struggling to believe it as it's never ending and he seems to be really struggling.
The docs recently gave him a inhaler which didn't touch the cough and we recently bought a humidifier which has took the edge off ever so slightly but the coughing fits are still horrendous.
We went back to the docs recently as I've been noticing a few other things, he seems to eat like there's no tomorrow (nursery tell us, he has three portions of his food) but he's still not growing and very small for his age. He's only just stopped wearing 3-6 months and DS is 14 months old. The docs confirmed this as he was in 50th centile at 6 weeks old and is now sitting at 9-25th centile. His poo is constantly a horrific smelling sludge (sorry if TMI) but only recently he's started pooing solids but almost seems like constipation as he cries when passing. And lastly, I and a few of DS family members have noticed he has times where his lips go blue (often passes within 10mins ) but does concern me. The docs have referred us to paed but said not really anything urgent so could be waiting 3+ months. AIBU, I just feel at the end of my tether and seriously struggling with watching my boy suffer.

Oh bless you. Im so sorry youve been poorly as well.
Try your best not to stress. I'm glad your little one should be seen in the next couple weeks.
Make sure you ask all your questions to the Dr no matter if they seem silly so that you feel all your worries are answered. If your not happy with the advice ask for 2nd opinions.
I hope your little one gets sorted very soon and you feel better soon.

My little boy had some health issues and I got him seen by multiple Drs at 2 different hospitals as I wasnt happy with the diagnosis the first hospital have as it wasnt very conclusive. I got the answers I needed and feel much better for chasing 2nd opinions.

Keep us posted on how you get on. Sending hugs 🤗

Hi @abbs1
Called the hospital today to find out where we are at with his referral as it's been a week and still no letter. I've been told they have graded his referral and it's been put down as routine and there's 18+ weeks waiting time.
Feel so drained and worn down and like nobody wants to help us. We have even had to size down on his nappies this week as they're hanging off him, I feel astounded nobody is concerned enough to help

@LittleDidIKnow21

Hi *@abbs1* Called the hospital today to find out where we are at with his referral as it's been a week and still no letter. I've been told they have graded his referral and it's been put down as routine and there's 18+ weeks waiting time. Feel so drained and worn down and like nobody wants to help us. We have even had to size down on his nappies this week as they're hanging off him, I feel astounded nobody is concerned enough to help

Oh my goodness that is crazy! You cant wait that long! I would ask to be put on cancellation list and put a complaint into PALS. I did this with my little boy and took him to a and e that day as the wait list was so long. They ended up making an appointment slot for him in a and e within 3 days and he got seen properly unlike waiting the 3+ months they were telling me.

If I was you, I would call 111 and ask for a Dr to call you and for him to be seen today either in a and e or a booked appointment at a walkin or urgent care clinic. The care you are being shown is shocking esp for such a small child. If they dont, take him to a and e anyways so he can be checked by a paediatric dr.

I feel so angry and frustrated for you. Sending hugs 🤗 xx

Thanks so much @abbs1 for your help and advice. Sending hugs back to you.
Unfortunately it gets worse. I spoke to the PA of the consultant today to see if she could push it urgent. I was asked what the doc had said when referring and did he mention suspected cancer. I mentioned I asked if he thought it was anything specific but the GP didn't allude to a certain medical condition. She said the only time you are told there is a one to two week wait is when it's suspected cancer and if that's what the GP think then they need to pick back up with the consultant and advise this as it wasn't mentioned in the referral.
I then spoke to the GP in a bit of a state who said he disagrees with the second GP's opinion who told us we should be seen within 1-2 weeks and he thinks it's routine and are ok to wait 18+ weeks. I reiterated DS cannot wait that long and weight is dropping off him so GP has booked an appt for his weight on Monday to see if it's dropped further and if so, they can 'expedite' the appt. Don't know what to think, I've got one doc who thinks it's cancer and it's urgent and another one telling me it's not urgent

@LittleDidIKnow21

Thanks so much *@abbs1* for your help and advice. Sending hugs back to you. Unfortunately it gets worse. I spoke to the PA of the consultant today to see if she could push it urgent. I was asked what the doc had said when referring and did he mention suspected cancer. I mentioned I asked if he thought it was anything specific but the GP didn't allude to a certain medical condition. She said the only time you are told there is a one to two week wait is when it's suspected cancer and if that's what the GP think then they need to pick back up with the consultant and advise this as it wasn't mentioned in the referral. I then spoke to the GP in a bit of a state who said he disagrees with the second GP's opinion who told us we should be seen within 1-2 weeks and he thinks it's routine and are ok to wait 18+ weeks. I reiterated DS cannot wait that long and weight is dropping off him so GP has booked an appt for his weight on Monday to see if it's dropped further and if so, they can 'expedite' the appt. Don't know what to think, I've got one doc who thinks it's cancer and it's urgent and another one telling me it's not urgent

Oh no! Im so sorry. Thats so confusing and worrying for you. How can one say one thing and the other not. Have both GPs seen your DS or is it only from what youve told them over phone appointments. I just can't believe they aren't taking you seriously when its a baby. My GP has seen my DS same day ftf and fitted him in even when fully booked when hes been poorly. I hope you get some answers on Monday in regards to getting a quick appointment.

I'm just wondering if you took him to a and e they could run some blood tests to see if anything gets flagged up. I know its awful for DS but it may give you some answers quicker and also a Paeds Dr is going to know more than a GP.

I'm just thinking back to when my little boy needed tests and we waited for paediatrician and had the appointment and they sent us for bloods and then had to wait for a follow up that took another few weeks.
I'd hate for you to get an appointment and they tell you that and its an even longer wait.

You have every right to take him there as he needs to urgently be seen and just say the GP keeps fobbing you off and youre getting no where and need someone to look at him, run tests to find out whats going on.

I'm praying everything is ok with him. Your anxiety and stress must be through the roof. I know mine would be. I feel so awful for you. 🤗🤗🤗

I would be at a and e. I would chase up a health visitor also

Did you get the oximeter??

@littledidiknow21 how is your little one doing and how are you doing? 🤗

Hi @abbs1
Sorry for the late response, it's been manic from my end.
We ended up calling 111 and asking for a second opinion. A doctor called us back and was astounded we were told we were OK to wait and he wanted us seen immediately. He did keep asking if I've told doctor this when explaining each symptom which I confirmed I did. We went to a booked appt at the hospital and ended up in A&E who told us he looked fine and well and they weren't willing to keep him on the above basis. I pleaded with them and they said they would speak to the paeds but it was likely they wouldn't look at him due to it being no real medical emergency. Next thing we know, we are being taken up to the paeds ward. After a couple of hours, we seen a doc who was so helpful and our little boy chose his moment to have a coughing fit to the point he was actually gasping for air. The doc said something was definitely not right and they were to keep him in and run some checks.
They did a blood test and an X-ray and they said they would do some follow up appts with a cystic fibrosis test, heart consultation and a stool and wee test.
The X-ray flagged that there was a patch in his lower lung which they are treating as an infection and he has a three week antibiotics course - three times a day.
His blood test was relatively normal apart from some bloods; thyroid was borderline, alk phos was 940 yet I've read it should be 150 tops I think (doc has acknowledged it's high), LDH 297 (which is double what it should be)
We have another consultation at the end of November. He's had bloods taken again yesterday and a second x ray in nov too.
Only thing I'm concerned about is his coughing died down for a bit however it's now starting again and following the exact cycle it did previously (non productive cough, dry cough almost sounds like barking, which will then turn chesty) - how can this be when we still have a week left on antibiotics?

@LittleDidIKnow21

Hi *@abbs1* Sorry for the late response, it's been manic from my end. We ended up calling 111 and asking for a second opinion. A doctor called us back and was astounded we were told we were OK to wait and he wanted us seen immediately. He did keep asking if I've told doctor this when explaining each symptom which I confirmed I did. We went to a booked appt at the hospital and ended up in A&E who told us he looked fine and well and they weren't willing to keep him on the above basis. I pleaded with them and they said they would speak to the paeds but it was likely they wouldn't look at him due to it being no real medical emergency. Next thing we know, we are being taken up to the paeds ward. After a couple of hours, we seen a doc who was so helpful and our little boy chose his moment to have a coughing fit to the point he was actually gasping for air. The doc said something was definitely not right and they were to keep him in and run some checks. They did a blood test and an X-ray and they said they would do some follow up appts with a cystic fibrosis test, heart consultation and a stool and wee test. The X-ray flagged that there was a patch in his lower lung which they are treating as an infection and he has a three week antibiotics course - three times a day. His blood test was relatively normal apart from some bloods; thyroid was borderline, alk phos was 940 yet I've read it should be 150 tops I think (doc has acknowledged it's high), LDH 297 (which is double what it should be) We have another consultation at the end of November. He's had bloods taken again yesterday and a second x ray in nov too. Only thing I'm concerned about is his coughing died down for a bit however it's now starting again and following the exact cycle it did previously (non productive cough, dry cough almost sounds like barking, which will then turn chesty) - how can this be when we still have a week left on antibiotics?

Hi lovely, Oh bless you. Sounds like its been very exhausting. I'm so glad you got seen in a and e and theyve finally run tests etc and your being taken seriously. Im so sorry theres still unanswered questions and hes still got his cough. Do you have anyone at the hospital the ward or anyone you can call to say antibiotics arent working and see what they say.

Hey @abbs1
I called the doc this morning as I was concerned about his cough and we haven't had his sweat test appt come through yet.
The doc is changing his antibiotics today and he will be on them for another week but has mentioned it is unusual for it to of not treated the infection or infections especially considering the length of time he has been on them. If he's no better after the week then the doc wants to see him again.
I'm so glad someone is seeing us and feel like the hospital gave the docs a real kick in the arse but just can't help feeling worried that we are back in the cycle of this cough and being unwell again and that it's not clearing up. X

@LittleDidIKnow21

Hey *@abbs1* I called the doc this morning as I was concerned about his cough and we haven't had his sweat test appt come through yet. The doc is changing his antibiotics today and he will be on them for another week but has mentioned it is unusual for it to of not treated the infection or infections especially considering the length of time he has been on them. If he's no better after the week then the doc wants to see him again. I'm so glad someone is seeing us and feel like the hospital gave the docs a real kick in the arse but just can't help feeling worried that we are back in the cycle of this cough and being unwell again and that it's not clearing up. X

Oh Im glad they are changing them to see if that helps. Sometimes the hospital is the only way to get the GP to take things more seriously and actually do something. Keep me posted on how he goes. Sending hugs 🤗 xx

@abbs1 thank you! You've been amazing listening to me rant so thank you so much.
He's got thrush now, so we are having to get some canesten but he's been sent home from nursery - just seems constant! Xx

[quote LittleDidIKnow21]@abbs1 thank you! You've been amazing listening to me rant so thank you so much.
He's got thrush now, so we are having to get some canesten but he's been sent home from nursery - just seems constant! Xx [/quote]
Aww no problem at all. Ive posted and asked for help and support a lot on here so I'm glad where I can help or just offer some support and a listening ear.
Oh no bless him. I hope everything settles down soon and you have answers so you can all have a lovely Christmas. Xx

Thanks @abbs1
Feel like I'm really struggling recently, and when DS is asleep I just want to lock myself in and not speak to anybody. The horrible feeling has come back and won't leave and I'm really struggling to understand why DS hasn't got better. IBU but just feel like everyone is so blasé about it and they think everything is fine, when I'm torturing myself daily and have this feeling that it's not ok. I don't know xxx

Sorry you're going through this Little, it's horrible when you're waiting to find out if there's something wrong with your child. So frustrating too. DD was ill as a baby and I had so many GPs and consultants dismiss my concerns.

@LittleDidIKnow21 I hadn't seen your thread before today but just wanted to say how amazing you are, pushing to get help for your son when there have been so many obstacles. Don't give up and if you need help for yourself please ask for it. Have you got support from family? Don't neglect yourself, your son needs you to be happy and well too.

@LittleDidIKnow21

Thanks *@abbs1* Feel like I'm really struggling recently, and when DS is asleep I just want to lock myself in and not speak to anybody. The horrible feeling has come back and won't leave and I'm really struggling to understand why DS hasn't got better. IBU but just feel like everyone is so blasé about it and they think everything is fine, when I'm torturing myself daily and have this feeling that it's not ok. I don't know xxx

Oh I know what you mean. Its so hard we we see our little ones 24/7 and know when something isnt right and a Dr etc is only seeing them for a few minutes or so and trying to base a diagnosis off that. When your little one coughs etc are you recording it to play to the GP and hospital Drs? With my little boys heart issue I showed them all the mottled photos of him and videos of him just falling asleep all the the time and not drinking his milk to help them understand what I was seeing but they werent if that makes sense. Feel free to PM me if you need someone to talk to xxx

@PragmaticWench thanks so much. Yes so frustrating! Hope your DD is at full health now!

@KatieKat88 thank you, that's so kind of you and really made my day!

@abbs1 - yeah I have been recording them, the first time they weren't really interested but have actually started to want to listen to the videos now!

We have been back to the docs today as they switched his antibiotics to try see if it would clear. Unfortunately we are still no better. Cough had definitely made progress until the past few days however the cough is starting to rear his head. His chest is crackling still and has made no improvement although it's not constant which makes me think it's not an infection? Dr advised the blood results, the ones that were spiked wouldn't actually be caused by an infection and instead suggests a chronic inflammation opposed to an acute to crp being low? Anyway, the dr today said his temp is high and cough not moving and hospital originally advised no more antibiotics after 3 weeks so was calling on call paeds for him to be seen possibly tonight or tomorrow. Apparently they were incredibly busy and have stuck him back on the original antibiotics and doubled the dose till he is next seen for his next appt (2 weeks) I think they are too busy and therefore they want to be seen as being proactive and have given the meds although we are all fully aware 3 weeks haven't helped at all!

@littledidiknow21 Hi lovely, I'm so sorry i didnt reply sooner. Did the on call paeds dr see him? Im so sorry hes still unwell and you haven't got to the bottom of this yet. Sending hugs 🤗

@abbs1 hey!
Please don't apologise, I'm grateful you're still listening to me vent
On call paeds didn't see him, was almost like they were too busy so fobbed him off with some more antibiotics. His cf appt came through yesterday and I've queried with them why we are giving him more antibiotics when we were told he was not to have any more after the 3 week course and I'm reluctant to keep pumping his body with more stuff when we are all in agreement that it doesn't seem to be working - she said she will be picking it up with the consultant and getting back to me so waiting again. Xx

Oh no! Thats so annoying you didn'tget seen. Can you just not give the antibiotics to him and tell them? If theyve agreed its not working as well I'd agree with you its not good to keep pumping him with medication for the sake of it poor bub.
Did they say how long the wait is until they have a chat to the consultant?

@abbs1 we haven't gave him the antibiotics as like you said no point pumping his body with more stuff.
Appt with consultant is in two weeks time, only it's on the phone so I'm feeling a bit uneasy that they won't be checking him over although the HV has booked a weigh in, his cf test is now booked along with the X-ray which is all before the consultation so can't complain that they are doing all they can with that and we will be getting the results when we speak to the consultant. Xx