This is my first post so please do bear with me. My son (2) has been on nebulised colomycin, azithromycin, inhalers and montelukast for a year to combat pseudomonas. This followed two weeks of IVs in hospital. Problem is - we cannot seem to find an underlying cause (negative for cystic fibrosis, bronchiectasis etc...). I wondered whether anyone has been on long term colomycin (or other antibiotics) like this without knowing the underlying cause of the infection?
I find this site a great support - thank you all and wish you all well.
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Puglife87
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How horrible for both of you. I have no experience with pseudomonas other than my step-dad had the two weeks of intravenous antibiotics. My only suggestion is to keep up with the doctors and trying to find the cause but I would also go to a Naturopath or an alternative medicine doctor who also deals with vitamins, mineral and herbs. It is always better if someone can give you a recommendation as no two doctors or naturopaths are the same.
For example, is your son on probiotics due to the enormous amount of antibiotics he has had? An alternative to probiotics are foods which are known to help reinforce the good gut bacteria. A healthy digestive system is now being linked to a healthy immune system and your son's immune system needs a pick up.
At two he is young. A good alternative medicine doctor or naturopath would know what would be appropriate for someone so young to build up his immune system. Keep up with the doctors he has but also seek advice concerning some immune system support.
Hi, your poor child. I wish I could help you to find answers but I cant. All I know is that pseudmonas is a stubborn bacteria and difficult to eradicate. There is one very informed dad on the forum, I hope he sees your post and can offer some advice or, if I could remember his name I could point you towards his posts and replies - can anyone remember his name?
You could call the BLF help line during office hours 03000 030555 I wish you all the best Iin getting some answers for your child. P x
Hi Puglife87
I would also suggest telephoning the BLF helpline concerning this situation.
Thank you Tugun, Peege and Bkin for taking the time to respond. I really appreciate your suggestions.
I will call the helpline for additional support (I've found BLF to be fab during the outbreak more generally).
If anyone does remember the name of the well informed dad in the meantime I would be forever grateful! I do feel like we've reached a dead end at the moment!
Hi there... Poor baby xx have they tested for aspergillus... This can sometimes cause a problem if undetected... Just a thought. I really hope you can get to the bottom of this... Best of luck xxx
I do Hooe you can get a diagnosis... At least then you will know what you are dealing with. Thinking about you xxx
Really sorry to hear you’re in this position. Unfortunately, people can only contract pseudo if there’s an underlying medical issue, be that a respiratory disease or some kind of issue with being more widely immunocompromised, so - as you know - there’s clearly something going on here. Forgive me if I’m rehashing stuff you’ve already considered or looked into, but I’m going to throw a couple of things out there: I’d hope that the docs looking after your boy have covered all their bases, but we’ve learnt the hard way that sometimes it pays to double check. I’m also working on the assumption that you’re under a specialist respiratory team, not just a paediatrician with special interest, and based in the UK.
When you say negative for cf, what tests have they done? As he’s only 2, he would have been screened as part of his Guthrie (heelprick) test: the test element for cf is complex and has multiple stages, but this potentially screens for (up to, depending on various factors) the top 28 cf mutations within the UK if the very first stage of it comes back raised. It usually picks up the vast majority of cases, but it’s recognised that it’s not foolproof and cases can very occasionally slip through, particularly if one or both mutations are classed as rare: there are in excess of 2500 known mutations of the involved gene that can cause cf. Did he come back completely ‘clear’ or was he picked up as a carrier? I’d really hope they’re not, but either way, if the medics are relying on that result and haven’t done anything else to double check, it might be worth pushing for further testing such as an extended genetic screen and/or a sweat test if they haven’t been down that road already.
Have they tested him for primary Cilia Dyskinesia (PCD) via a nasal brushing? This has similar symptoms to CF (and bronchiectasis), and the treatment is virtually the same. The two leading centres for PCD in the UK are actually leading CF centres, one of whom looks after my 12 yo with cf and ran a PCD test on her when we transferred to them last year. They ran the test because her clinical picture doesn’t match up to her symptoms and ct results, and like me, the team don’t like unanswered whys!
As a Dad to a child with cf who has always been significantly symptomatic and required a lot of treatment (we started antipseudomonal nebs on her first birthday, purely because they didn’t know what else to do with her and assumed that she had to have it for how problematic she was being), I can appreciate how hard this situation is, particularly in the absence of a diagnosis, but over the years I’ve come to realise that science can’t always give us the answers. The reality is that we’ve only scratched the surface with our understanding of the human body and all the ways it can go wrong, particularly with genetics, although many people are under the impression otherwise. There definitely are children out there, although relatively few in number, who don’t have a definitive diagnosis in spite of clear respiratory symptoms, and I actually met a mum a couple of years ago in exactly the same position as you, although her son was around 7 years old. At the time there were non cf things going on with my daughter that no one could answer (and still can’t, even though the issues are ongoing) and she gave me some words of wisdom: her perspective was that as long as her son was under the right people, and receiving the right treatment for the symptoms and issues he had, she’d learnt that she’d go nuts if she kept dwelling on the why. He was under the cf team, receiving the same treatment as a child wcf, and that’s what she focussed on. As frustrating as it is, if all the tests have been run, it does ultimately have to become about making sure we’re getting the best treatment we can with the information available.
Thank you Charlie G for your in depth response. You have summed up a lot so well! I do hope your daughter is doing ok. Very best wishes to her.
Yep, my little boy has had the usual tests including sweat tests, blood test for CF (I think that must have been the genetic test), nasal brushing for PCD over at The Royal Brompton, bronchoscopy and sleep study. He also had an impedence study but we don't have the results for that. His respiratory team really do seem to care and have been good pastorally. No doubt things have slowed down due to COVID-19.
I worry whether we will ever find the root cause... and if there are other things that should be investigated (like aspergillus as mentioned above) or to repeat the sweat test again. [Note: I do appreciate that this is not a forum run by medics!]
Have others been through this as well? As time goes on I worry tlhat we will never fully understand it! But I do completely understand and agree with your point that we probably haven't scratched the surface of understanding the human body! I guess time will tell!
Are the team at the RBH leading your care?After lots of research, we moved 250 miles last summer just to fall into their catchment area and they’ve done amazing things with Bod given the mess she was in when we arrived. The care she’s received has been second to none, and their willingness to listen has been life-changing for us. Unfortunately, she doesn’t stay well and never has from birth, partly in recent years because she’s had chronic pseudo since the age of 4, but along with a condition called tracheobronchomalacia (‘floppy’ airways that complicate keeping her chest clear of mucus), we also think there’s probably an underlying issue we haven’t identified. Has to be said that the poor standard of care she received for the last few years didn’t do her any favours, either, though. Her last ct scan shows that she now has widespread small airway disease (a type of lung damage) and some bronchiectasis, and whilst that explains her reduced lung function, there’s not enough bronch to explain the extent of her symptoms. Tbh, I think she just likes posing puzzles for the medical establishment, as she’s got a diagnosis list as long as your arm on top of the cf, including some ongoing question marks 🤷♂️🙄
The blood test will most likely have been a genetic screen, and it certainly seems like you’ve had the full range of other testing options from a respiratory stand point. How long ago was the impedance study? If it was a while ago, they would have fairly quickly commenced anti-reflux treatment had anything shown up, but again, these aren’t necessarily definitive. Child’s study was described as unremarkable, but they bronched her about 2 months later and her vocal chords were red raw from acid. You’ll learn in time that a considerable amount of respiratory medicine and management is a lot of educated guesswork, unfortunately, even for the experts. There can be a fair amount of trial and error required.
Has anyone suggested looking at whether he’s aspirating food/drink into his lungs (pulmonary aspiration)? This is usually done via a type of x-ray based test called video fluoroscopy (VF). The food alters the lung environment, allowing bacteria to quite frequently take hold, and pseudomonas is often cultured in cases of aspirate pneumonia. They’ve found a tiny amount of aspiration in our case, but not enough to be considered clinically significant to why her chest is such a pain in the bum to manage. As for repeating a sweat test, if it had been intermediate they would have repeated it as standard anyway (levels between 40 and 60), so that would suggest low levels. Low sweat chloride levels aren’t definitive, but in combination with a negative (extended) genetic screen, it does suggest that cf is very unlikely. Which I can imagine is 50/50 brilliant and hugely frustrating news at the same time.
Was the pseudo grown from bronch? I can’t speak to practice at other hospitals other than those we’ve attended, but with regards to aspergillus, the Brompton routinely send all clinic and admission samples (sputum or cough swab) for fungal culture, and they grow them for an extended period of about a month. It was this that enabled them to find a fungus that our old tertiary centre had missed and was making the child really unwell for months ahead of our move. Bronch samples would also be routinely run for fungus at most hospitals. Aspergillus is one of the few things that show in blood tests (IgE and IgG: raised G indicates prior exposure to Aspergillus, raised E indicates an allergy to the fungus, which is a condition known as ABPA and tends to be fairly obvious from symptoms and poor chest health), and these are routinely checked in children with cf for sure. I’m not sure what the clinical guidelines are for children with other respiratory conditions, but I suspect with the question mark over your boy they’ll have been run at some point, particularly as they’re standard screening on admission for IVs. Fungus is definitely worth looking into if he’s not getting or keeping particularly well from a chest stand point, now or at any point in the future, but if the treatment he’s on is generally keeping him quite steady and the main concern you have is the lack of diagnosis, from my own understanding and experience, it’s unlikely to be a current issue.
As I said before, there are definitely others out there in the same position. I’m not a fan of social media these days, but several moons ago there was a very active cf parents community on Facebook - it might be worth looking them up and putting the feelers out there for other parents in your boat. I suspect you might find a couple, or pointers in the right direction as to where they hang out. Whilst the treatment is going to be similar, it’s always nice to find people who wholly and completely understand what you’re going through. I always say that I can cope with anything if I know what I’m dealing with, so where we don’t have answers with the child, I do find it difficult to let the what and why go in favour of focusing on the how we deal with it. I’ll never stop looking for the answers, but I’ve learnt it’s not in anybody’s best interests for me to obsess.
So sorry for the delayed response - work has been cranked up a notch over the past few days.
It really sounds like your daughter has been through the mill. Lots of warm wishes and cuddles for her. It sounds like you are doing such a fantastic job caring for her and being her advocate. Such a huge decision to move so far from home but the right one for you to be near better care . We've only been to RBH once for the nasal brushing and consultant apppointment. I would say that the consultant we saw was very knowledgeable and put us instantly at ease. I wish we could see her again!
They also found tracheobronchomalacea or "floppy airways" with my son during his bronchoscopy. Not much has been said about it since to be honest! I got the sense they thought he would "grow out of it". I should follow up oj that together with pulmonary aspiration as you say. That's not been suggested so far.
The good news is that a cough swab was taken this week - the first time for months due to the virus. So fingers crossed that the bug has not grown from the sample...although I'll be honest...from what we know and what everyone says about its stubborness, I'm not hopeful. I'll keep you posted!
Please do, and you’ll always get useful advice from the lovely people here, or failing that moral and emotional support when you’re having a pants day!! Fingers crossed for a clear swab: despite its reputation, the evidence shows that pseudo absolutely can be eradicated if a first growth is treated quickly and aggressively.
Have you considered requesting the Brompton take his case? Geography plays a part, but you can ask for a specialist respiratory team to be involved if you’re only receiving care from a paediatrician with special interest in respiratory.
Tracheobronchomalacia is quite an interesting one. It can be congenital, so from birth, or it can be acquired, and they estimate that up to 30% of adult cf patients end up with the acquired form due to structural damage from coughing over time. In many cases, the congenital form has no underlying cause, but it can also be linked to conditions that effect connective tissues throughout the body such as ‘benign’ hypermobility syndrome and some sub types of Ehrler Danlos Syndrome. In our specific case, Bod is extremely hypermobile with several other clinical features that in combination would suggest she has hypermobile EDS, and it would actually explain a lot of the other things she’s got going on.
The TBM was diagnosed via bronch at 3 months old: she’d been pretty dire with her chest from 4 weeks, already having needed orals and 2 courses of IVs, so they bronched her and found a couple of minor structural anomalies, floppy bronchi and pretty severe TM - her trachea completely collapsed on coughing and was distinctly oval shaped even with normal breathing. It explained the ‘wheezing’ we’d been frequently hearing and that it didn’t seem to respond to inhalers. It also gave some explanation as to why she was already struggling chest wise: the difficulty with TM when combined with respiratory conditions, particularly those with sputum production, is that it makes many methods of chest clearance physio less effective. The sputum can’t be readily cleared in the same way that it would be in someone without it, gets trapped in the lungs, and becomes an even better breeding ground for environmental bacteria. Sputum left in the lungs for a long time can also solidify, impacting on lung function and adding to the cycle of infection. I don’t know if you’ve been advised to do formal physio, but if so, techniques like PEP/baby PEP (and the variations like oscillating PEP as they get older) are far more effective in TBM as they use positive pressure to splint the airways open. Bubble pep is good with youngsters if they can understand to blow, not suck, and can be made at home with just a bottle, some washing up liquid and a length of tubing.
If there’s no underlying cause, most cases of TBM/TM in young children do spontaneously resolve as they grow. Although it was relatively severe, and without knowing at that stage that she had other issues, we were originally told Bod would probably out grow hers by the age of 2, but in the interim they anticipated she’d require a lot more intervention for her cf than other children. That turned out to be a massive understatement, and still is to some extent, although I don’t think much of it is attributable purely to the malacia. Treatment options for TBM itself are extremely limited and unless life-threatening, even in fairly severe cases it tends to be purely supportive measures such as CPAP. This was considered in our case but ultimately dismissed. As she got older, we tended to only notice the grunty/wheezy sounds of her TBM if she was spinning on her head or doing acrobatics, and then only in her cough or huffing to clear her chest as she grew a bit more, but a second bronch at the age of 6 showed she still had significant malacia. Another bronch last summer shows that she now predominantly just has the tracheomalacia, but still a substantial degree of it, along with a ‘Norman arch’ shaped anomaly in the wall of her trachea that our old consultant got strangely excited about when he first found it, although it doesn’t indicate anything in particular. These days, you can occasionally hear a sort of rasp behind her coughs and huffs, particularly with an infection, and in addition to having a distinct, unusual shaped graph during lung function tests, there’s also quite a loud noise behind her blows that’s essentially her trachea having a bit of a meltdown, but those along with her tendency to sleep with her mouth open and head tipped slightly back are the only outward signs. It’s never caused us any problems in terms of procedures or anaesthetics, and her sats when well are consistently 96% and above, so even if your lad doesn’t outgrow it, it’s not necessarily a huge problem beyond the implications for effective chest clearance to minimise infections.
Afraid I'd not heard of this until today and so I am certain he has not been tested for it (I am a sucker for writing everything down at the hospital - I almost have a full book)! I will be sure to ask about this.
A very warm welcome to you, although I am so very sorry to hear about your little son’s health issues. I truly hope the clinicians can put together the complex jigsaw pieces and find a diagnosis.
Your little boy and Charlie’s little daughter are lucky to have such proactive parents as their advocates and their rocks. I know because I had a very proactive Mum, who all those years ago in very different times, when I was a baby and beyond was my rock.
Good information from you new friends and if you need to talk things through you can always telephone BLF. They are very knowledgeable both about paediatric lung issues as well as adult lung issues. You are not alone.
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