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My Son Is A Triplet. He Is Suffering From Chronic

Posted on Thu, 18 Aug 2022
Question: My son is a triplet. He is suffering from Chronic lung disease, seems quite severe due to repeated hospitalisations. He was born in May last year at 28 Weeks, He was given steroid therapy of Dart to allow him back into Nasal prong oxygen.

Since then he has has repeated readmissions and approximately 4 times where he has been ventilated because of his chronic lung disease, he seems to be mucusy and crackles on chest when this happens. Since March he has been ventilated 2 times, but he had Adenovirus which affected him really bad, he has picked up norovirus, The doctors have tried multiple steroid treatments like Dexamethasone, Methyl Pred - We have had sheer bad luck as always something manages to go wrong. We got him to 12 hour nasal prong, and even on 12 hour cpap regime, but he may have got tired, as his co2 was around 10-11. It has since come down but we have needed to give Methyl Pred again.

As a father and parents we are confused what else we can do, we seem to have bad luck all the time, when he is in good health he seems to pick up infections and then we are back on stage 1. The doctor the other day said we usually see improvement
but this is chronic lung disease, and we have been told it takes time to get better.

I would be happy to pay for a Airvo2 machine to a tleast get my son home, what else can I discuss with the doctors, is there anything else we can try?

WE do try and get a meeting with the doctors, but I feel they are lost themselves. They try to add a hour each day on nasal prong and build him up to 12 hours, this seems it hasn't worked either.
He is currently on CPAP 3-4 litres.

Please give me some guidance of what else we can suggest, and how we can get him home - 5 months in hospital is a lot of time!
Follow up: Dr. Taher Y Kagalwala (2 minutes later)
He is on Duiretic
Spironlactone, Amiloride,
Dalvit Drops,
Sodium Chloride - As he has a stoma also.
Dex - Alternate day.
Follow up: Dr. Taher Y Kagalwala (3 hours later)
Hello - Also to add can Surfactant be given?
Answered by Dr. Taher Y Kagalwala (20 hours later)
Brief Answer:
Home oxygen therapy, preventive antibiotics, physiotherapy and care

Detailed Answer:

Allow me to commiserate with you. Indeed, it is unfortunate that your son is having to bear with this much trouble! May I ask how he landed up with CLD, and why he has a stoma? Please send me these two bits of information. Also, could you upload images of his chest X-rays and the results of his last blood counts and other tests? Did he receive any special vaccines? Does he have a normal heart function and are his heart ultrasound results normal? We will continue once you have provided me with the above information. Thank you for reaching out to me through this portal.

Dr Taher Kagalwala
Above answer was peer-reviewed by : Dr. Vaishalee Punj
Follow up: Dr. Taher Y Kagalwala (2 hours later)
Dr Taher

May I ask are you a Specialist based in the UK?

I am so sorry - But as he still is a inpatient it will be difficult to get hold of the X-ray but I will ask the doctors on ward round tomorrow, if I can take a copy of the Xray. But Judging by what has gone on these last 4 months where he has been ventilated twice - He has I am guessing severe chronic lung disease, on the X-ray I can say there are several white patches which show chronic changes - this is just a snapshot review for you. I have also noticed the lung collapse majorly happens on the right side of the lung only - is there anything which can be done or treatment for this - He has currently had another treatment of Methyl Pred - Why because we get him on 12 hour Nasal prongs, 12 Hour CPAP (which was done overnight) - He is continually on CPAP atm.

The reasons for CLD, is Chronic lung of prematurity he was born on 27 weeks 4 days, and spent the majority of his time ventilated a couple of times, where DART therapy was given to help with Discharge. I am guessing he also had NEC on 29th week Gestation and needed to be ventilated again, with numerous lung collapses (Pneumothorax).

Heart function is okay - He does have a ASD (which is below 1cm), he is also diagnosed with pulmonary hypertension - in which he has been given sildenafil. He is on a alternate dose of Prednisone moving forward.
Currently as of today doctors have said they are working on a 24 hour plan only for him - can you shed some light why this may be? Also we are trying to get a meeting with his consultant but proving difficult.

I Hope the above helps with something - I need some new interventions of what we can try.

Bloods are all ok and within limits, CRP, Kidney function etc - they are also doing tests to see if theres surfactant in lungs, can more of this be given? what more can you suggest.

Answered by Dr. Taher Y Kagalwala (3 hours later)
Brief Answer:
Kindly go through the full answer!

Detailed Answer:

Thank you for your prompt revert. I believe that his getting infection repeatedly, and the collapse of a particular lung area each time suggests that that area may have to be looked at by respiratory specialists. An endoscopy of his bronchial tree may help to further understand the problem. In occasional cases, the defective lung segment may even have to be surgically removed; however, the child's delicate overall condition will preclude any such heroic surgery at the present time.

I am indeed an India-trained Paediatrician, but I have been working in the U. K. now for over 6 years.

I think your son's medical team is very guarded about his overall likelihood of complete cure, and hence are unwilling to look beyond each day. His perpetual need for steroids indicates that his condition is quite serious. Every time he is given steroids, his immunity actually goes down further, thus making him vulnerable to more infections. The fact that he also has pulmonary hypertension and a hole in the heart, plus his constant need for diuretics and sodium supplements suggest that he still has some way to go before he is out of the woods.

Surfactant helps only within the first few days, and not after that, so that treatment is out of the question.

I did ask you about any special vaccines. In the U. K., we give preemies 4-5 doses of a special injection that protects such babies against infection with the RSV - the Respiratory Syncytial Virus. This injection is a synthetic monoclonal antibody against the RSV, and it is given monthly during the winter months, starting in October or November. The RSV is a destructive virus that can wreak havoc with the already damaged lungs of a baby like your son. In countries like XXXXXXX we do not have the potential to diagnose RSV infection easily.

As you haven't told me which country you are in, I am not able to clearly see the problem in the right context - but it doesn't matter much as the baby already has received good treatment. I am assuming the other two siblings of this trio are okay.

Finally, we do consider a baseline antibiotic therapy for babies like your son. This can help prevent repeated LRTI's.

I hope this helps to some extent. Do try and retrieve his X-rays. I am happy to take a look at them.

Discuss referral to the respiratory team.

Thank you once again.

Dr Taher
Above answer was peer-reviewed by : Dr. Raju A.T
Follow up: Dr. Taher Y Kagalwala (2 hours later)
Hello I am from the U.K also and a GP.
And we are currently under respiratory specialists.
Yes we had the RSV injections in the UK - and he did have some but been in and out of hospital.

In regards to the 24 hour look that's just recently happened as of Monday. Do you see chronic lung babies get better with time he is corrected 1 years old next month? He is showing good neuro development however moving around XXXXXXX nearly sitting up unaided!

Also the need for steroids I guess has been only done so the team can avoid him getting into ICU and ventilated . He is currently on prednisone alternate days, use to be Dex but with time steroids become not as affective.

He picked up adenovirus which has changed the whole outcome since March , he is currently on Azithromycin - do you recommend him any other stronger antibiotics for exacerbations?

We plan to bring him home on CPAP in the night and trying to establish low flow in day - but after having built up this for nearly 2 weeks slowly. I think he fell

He is putting on weight nicely and is close to 9kg - I believe if a baby is putting weight on this is positive as he can only outgrow this issue.

Can you recommend any better bronchodilators, antibiotics for exacerbations? I am happy to purchase a airvo machine if needs be.

In the follow up meeting with his consultant can you give me some good questions to ask in how he will be discharged and what the plan should be!

Follow up: Dr. Taher Y Kagalwala (2 minutes later)
I will try and get x rays but they seem to be a bit funny as you know there are a lot of rules.
Follow up: Dr. Taher Y Kagalwala (0 minute later)
Can't we look at involving physio work on chest muscles, maybe PEP mask to inflate lungs
Answered by Dr. Taher Y Kagalwala (5 hours later)
Brief Answer:
Pleasure to meet you, Dr XXXXXXX XXXXXXX

Detailed Answer:
I work as a middle-grade by choice in Blackpool. I have seen some patients with CLD who have needed home oxygen even in their second year of life. Weight gain in a patient who is on chronic steroid therapy - hmm. Look at that with some scepticism. I would therefore not be too happy to just see that weight gain. I know alternate-day steroids do cause the least suppression of the HPA axis, but the important word there is "least" - not "none".

I am happy he is under the respiratory team. I mentioned physio in the very first line of the first message I sent out to you but must have overlooked mentioning that in the full answer. Yes, there is no substitute for good physio - and I would explore this to the limit.

I was also happy to learn that he got Synagis therapy.

It is clear that adenovirus is a destructive virus that sometimes leads to lungs that become similar to those of the lungs of an adult COPD patient.

Azithromycin thrice a week is adequate, as most issues in such cases are caused by viruses and not bacteria.

I hope that answers all your questions.

Perhaps I would put forth the following questions:

1. Ask for their experience in managing children like your son and whether they anticipate his improvement.
2. Explore endoscopy and bronchial washings for culture and antibiotic sensitivity tests - he may well have a resistant bug inside his lung -something like C.burkholdaria or the ever-invasive Pseudomonas.
3. See where we are with physio,
4. Ask the question about surgery only when he is stable/older
5. Consider bronchodilators - combinations of salbutamol and ipratropium to begin with, but other drugs as they go along.
6 Minimising steroids - this should be done as a matter of importance.
7. Home-based ventilation would certainly be of help.
8. Remember, if there is a virus, antibiotics will not be of much help. Aggressive use of inflammatory markers, full blood counts and cultures is very important before rushing in blindly with ever-more powerful antibiotics.
"If it ain't broke, don't fix it" - would be my way of using antibiotics.

Thank you.
Above answer was peer-reviewed by : Dr. LAKSHMI
Follow up: Dr. Taher Y Kagalwala (2 days later)
Hello dr XXXXXXX
Just wanted to reach out and ask would a tracheostomy help ?
Follow up: Dr. Taher Y Kagalwala (1 hour later)
Also we had a discussion today with doctor. Who told us what the plan is with the weaning. They will get him ok on Airvo2 for up to 8 hours then wean to low flow.

Do you know any other specialists care centres anywhere?

He did mention that chronic lung diseases patient sometimes don't recover. But he said he is continuing with the treatment and not saying anything like that.
I need ideas doctor of what we can do?

Say we get the worst case scenario, I will do everything to keep my son a live. Will private care be easy to organise?
Answered by Dr. Taher Y Kagalwala (17 hours later)
Brief Answer:
Private vs NHS Public care - not a good discussion

Detailed Answer:

First of all, apologies for not answering sooner. I was a little busy with my own work.

CLD is a condition with a guarded prognosis for infants who are still needing oxygen after the age of 1 year. In addition, he has pulmonary hypertension, a need for electrolyte supplements, and has gone through a severe adenoviral infection. The good news is that he is putting on weight and that he HAS survived all the odds and is still fighting it out!

Having said that, I think the consultant looking after him has indeed given you a realistic outlook. Now, it is in your hands as to whether you want to take him private. I assume that would still have to be in a tertiary NHS setting, since he is a high dependency care patient.

I am not aware of a "particular" setting or doctor that may be able to offer him something better. As I have said, he is receiving most of the standard care that children like him receive.

A tracheostomy is a fairly serious procedure for someone of his age, and this will help him only if they can show that there is a blockage to the clearance of secretions, or prove that he is developing a laryngeal oedema or narrowing secondary to long-term ET placement - and as this is not the case with him, a trachy is unlikely to offer much benefit.

Finally, if you are looking at simply accepting the worst and taking him home to be looked after private nurses, you will need to discuss that with his consultant, the ethics committee of the hospital, the availability of high-flow oxygen therapy at home, the feasibility of doing this if you are living in a residential apartment setting or in a crowded locality, the presence of community nurses who can come out as often as needed to continue the high-level home-based high flow therapy, and so on.

On the other hand, I don't think we should be talking about palliation as yet. I think there is a chance - perhaps less than even - that he may still pull out of this in a year or so. However, his state is such that unless something heroic is done, such as a heart-lung transplant - he may require life-long medicines and care for his debilitated heart and lungs. Before that, though, other modalities such as a lobectomy etc. may have to be considered if there is only a single segment or lobe of the lung physically destroyed by the twin assaults of the CLD and the adenovirus.

I am sorry, but this is what it is. I respect your and your family's courage and resilience through all this. Perhaps, we will meet one day. And I will get to see your lovely son, all recovered.

Dr Taher
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Above answer was peer-reviewed by : Dr. LAKSHMI
Answered by
Dr. Taher Y Kagalwala


Practicing since :1982

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My Son Is A Triplet. He Is Suffering From Chronic

He is on Duiretic Spironlactone, Amiloride, Dalvit Drops, Sodium Chloride - As he has a stoma also. Dex - Alternate day.