Advise /any help greatly appreciated - British Lung Foun...

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Advise /any help greatly appreciated

Jusy profile image

Hi all. I am living in Paris for a couple of years from the uk with my husband and daughter (3yrs old) since our daughter was a few weeks old she has always had colds, god told us it was normal then when she started at nursery it was normal because she was at nursery and to expect this for at least a year then after the year children get colds. After two years and hanging go practises we were referred to edinburgh sick kids who stayed her and found part of her lung had collapsed after 4 weeks of strong antibiotics she was still coughing but the lung was ok. Three months later they did an endoscope and the consultant could not believe how much thick Lucas was in side her lungs. She has been on oreventative antibiotics for almost a year now . She was referred to another consultant here in Paris and he is redoing the endoscope in two weeks as she is still coughing (although better on the preventative antibiotics) he said the latest X-ray showed there was a problem as the bronchial was thickened (something the oederrituon did not notice ere when shown the same X-ray he said the X-ray was healthy). Currently the consultant thinks she either has pcd (no recent ear infections but before she started the preventative antibiotic she did used to get regular ear infections in both ears) or that she had a really. As infection as a baby and it has 'damaged her bronchial'. I'm really confused and swinging between happy that we are moving forward and upset that my baby is ill. In Paris the chest physio comes to the house a couple of evening a week and I don't even know if that's possible in the uk. I am panicking for what this might mean when we get back to the uk. And long ten care. Any advise would be greatly appreciated

20 Replies

Sorry to read about your daughters problems, it does sound as if things are moving forward though. In the UK you will have to take your little girl to the hospital to see a specialist but hopefully they can do all the necessary tests to enable a full diagnosis and treatment.

I do wish you well and pray your daughter does better. Please let us know how you get on. Xxxx

Jusy profile image
Jusy in reply to sassy59

Thank you. Will let you know how we get on

Hi there. I am very concerned at your daighter being put through a very invasive procedure twice. Has she been tested for cystic fibrosis?

Also, you mention that she had an infection when she was very wrong which damaged her chest. There are several of us on this site who had a similar experience as children. This resulted in damage to the lungs and bronchial tubes. The resulting condition is called bronchiectasis.

I began getting very ill with repeated pneumonias and chest infections at eighteen months old. I was finally diagnosed at three years of age. With proper physiotherapy and antibiotic treatment I have now reached the grand old age of 67 .

This can be diagnosed by ct scan. I must stress that it is comaratively rare and many general respiratory consultants do not know much about it. Also, they are very unlikely to look for it in a child. It is rare in children but not unknown. I am the living proof.

It needs specialist diagnosis and an expert in bronchiectasis to give ongoing care.

I suggest that you ask the consultant that you have now to look for bronchiectasis by ct scan or find a paediatric consultant who specialises in it before you put your child through another endoscope when the first one showed what was there but no proper diagnosis was made.

I really feel for you and hope that you find the right care.

Jusy profile image
Jusy in reply to

Thank you. Yes she had a sweat test and that came back normal. I agree with your comments regarding the endoscope but this is a different consultant in a different country so I can also see why he wants to go in to check. My understanding is that he will be taking samples to check for pcd at the same time. I am interested in your experience with bronchietits. As the consultant did say looking at the X-ray that would be where he would place his money. Do you still need regular chest physio? Our daughter is very happy and really active. Which is why we have been sent back from uk hospitals so much as sh does not look ill. When she was very ill as a 1 yr old the a and e sent us home saying that there sats machines were wrong as three machines as recorded her sats at low 80s but she was happily playing! Her sats on the preventative antibiotic are good with dips to mid 90s if she has a bad cold / infection. I don't know what will have caused it though as she only had one bout of brincititis as a tiny baby (that was diagnosed). We spent virtually every other week st out of hours who woul Sen us to the hospital who would send us home

in reply to Jusy

Glad that cf is out of the way. Bronchiectasis can only be diagnosed by ct scan and I do think that given everything you have said about your daughter that this route would be far less distressing for her than an endoscopy. These doctors do love their toys.

Your daughter sounds a lot like me. Very lively except for when the infections flared up. Even now I have people say that I don’t look ‘unwell’. Seriously, bronchiectasis needs to be managed from the start and yes, physiotherapy ( self administered once you have learned it), learning how to breathe properly, lots of exercise and learning to recognise when an exacerbation ( infection) is starting up.

I am quite amused that a doctor looked at her xray and put his money on bronchiectasis but didn’t follow that with sending her to a bronch expert who would do the ct scan. Disgusting frankly.

I’m afraid that with lung conditions we need to be very proactive and vociferous in seeking out the proper care. As my Mum did for me. They wrote me off at 6 years old but she found a specialist who gave me the full life that I have had.

Giving preventative antibiotics at this stage is not addressing the issue of what damage the lungs have sustained or clearing out the gunk which is left down there and clearing any residual deep seated infection with the right antibiotic in the right dose, delivered in an appropriate way. Plus clearance tecniques to get the mucus out so that it does not form a happy party place for bugs to grow and cause further infection.

Firtsly though, she needs a proper diagnosis of the state of her lungs. Another assessment of what is lurking down there by endoscope is not, in my opinion going to help at present. I speak as a child who was put through diagnosis by bronchogram at three years old in the days when ct scans did not exist. It damaged me for life and gave me a lifelong hatred of hospitals and procedures. I would ask why not a ct scan first to look for bronchiectasis. Any bugs in the mucus can then be established in a lab after she has coughed it up..Make sure that the consultant knows what bronchiectasis is and how it is treated. Many of them do not but pretend that they do.

I am going to my voluntary job as a guide in a Heritage Centre now but will happlily talk to you later if you want to.

Jusy profile image
Jusy in reply to

Thank you. Unfortunately we can not get in with the specialist again until we see him on the day of the procedure but I am logging a list of questions that I have for him and this will defiantly be at the top. It's harder because my french is non existent and my husband who does speak french struggles with the medical jargon. There is also a culture of the doctor is king here which is not great as when I kept asking for clarity on what he was saying he was not used o it! Although his English is ok and he did help me understand. Hopefully we will have answers soon and move forward. I would be interested to know how it impacts your day to day living / routine. We have not decided when're or when in the next couple of years w should come back o in the uk so any info about regular hospital visits / physio / etc would be great.

in reply to Jusy

You have plenty to think about now. I will just tell you that it is a lifetime routine. I had a normal education, went to Grammar school. Worked as a beautician and as a disc jockey all over the world. I married and had my first baby in Beirut. Left my home there in a tank because of the civil war, pregnant with my son. Lived in the US and England. My children are now 45 and 42 with their own families. Not a normal life but not in the way you are asking. I cleared my lungs every day, took my antibiotics when an exacerbation started up and got on with it.It is all about getting in control of it. Frankly I don’t trust doctors. I have seen too much medical ignorance around my condition.

Doctors are not KING.

If you are not getting answers ( and it sounds as though he is using avoidance tactics). Look for a good paediatric respiratory consultant who specialises in bronchiectasis in England and bring her back here. Insist on being referred to the person whom you have found. This is your daughter’s health which is important, not the ego of a doctor with ideas above his knowledge.

Jusy profile image
Jusy in reply to

Thank you. We are exploring where in the uk would be best to call home to ensure she gets the right care. We are originally from the north west but with work we are also looking in the south west

hypercat54 profile image
hypercat54 in reply to Jusy

I live in the South West and I don't know of any very good hospitals here. I think there there are a couple in the North West though?.

I think you would be better to be near or in London as that's where you will be more likely to find the specialist doctors and best hospitals.

Jusy profile image
Jusy in reply to hypercat54

Thank you. Hopefully when we have a firm diagnosis we can start to research where is best.

hypercat54 profile image
hypercat54 in reply to Jusy

You are welcome. I hope you find some answers for your little one. x

Also read Natural News online, an online science/medical journal written by scientists not in big Pharma directly they may help advice wise.

My 43 year old daughter coughed all through her babyhood and childhood years , she was eight when she was diagnosed with asthma after many GP told me there was nothing wrong with the child ' it's you being an over anxious mother' ....this was when she was coughing up specks of blood!

She still has multiple allergies to cats, dogs, horses, grass and tree pollen , together with nuts amongst other things. but her asthma now is under control and she no longer coughs.

Have you noticed if your daughter is allergic to anything in her environment.

Thank you. We have had allergy tests and. Other then a mild reaction to berries she has no allergies. We did initially go down the asthma review with the consultant in the uk but the inhalers made no difference

Hello Jusy, firstly, how aweful this is for your little girl bless her, it's bad enough for an adult but life isn't fair when it comes to a child suffering. I hope she gets all the help she needs. God Bless her. ✋️😊

Hi Jusy,

A very warm welcome, although I am so sorry it is becuase your little daughter has been and is so unwell.

Like littlepom I have had non cf bronchiectasis since 5 months old at the start of the NHS. Tests should be much improved from those days.

I am very perplexed. It sounds like your consulant definitely suspects the possibility of bronchiectasis, otherwise s/he wouldn't have had a sweat test done and the big clue for me is that he thinks your little one could have PCD. PCD is another hereditory cause of bronchiectasis. The treatment would be the same as it is bronchiectasis but there are specialist centres in the UK for PCD. So if con suspects bronciectasis (BE), then, as LP has said, why aren't they opting for a ct scan. I appreciate the language difficulty but I would want to contact the con and ask what their reasoning is for not having a scan but doing yet another intrusive test.

A physio twice a week is not good enough. They should be referring you to a respiratory physio if your dear little one is diagnosed with BE and you will be taught how to do it for her and it will need to be done daily to keep her well.

This link might be useful to you for the future

She has not been diagnosed yet so we don't want to get ahead of ourselves but of course you need to be prepared so I have included this link from the PCD Family Support Group.

Just want to add that if your daughter is dianosed with bronchiectasis, the future will be much brighter. It is a condition that has long been negllected but there is now a lot of interest and research specifically for non cf bronchiectasis. The European Respiratory Society are so proactive and the PCD Family Support Group were partners in their latest Patient Priorities - Bronchiectasis.

Hope all this is unnecessary for your family.

Please let us know how you get on.

Love and hugs to your little daughter and mum and dad of course.

Love cx

Jusy profile image
Jusy in reply to cofdrop-UK

Thank you so much. I have spoken to my husband this evening about the craft scan and he has said that as she has just had another heat X-ray last month he would prefer the endoscope as the radiation limit for the ct scan after two chest X-rays this year would be high. I appreciate your good wishes. I think I am finding it particularly tough as we have moved from a consultant in the uk to the one in Paris although he is a child respiritory specialist so that should help. Hopefully when we get a firm diagnosis we will be able to plan for move back to the uk. And hopefully be near a specialist hospital if needed. We were thought in the uk to do the cupping and percussion and still do that most days the chest physio over here is in addition and again he only deals with small children with lung issues so he is good ar making it a game for the little onewe have learnt that tickling is a great way or her to clear her chest!

cofdrop-UK profile image
cofdrop-UK in reply to Jusy

I understaand and respect your husband's concerns, even if the scan was done at a children's hospital and the radiation adjusted so she wouldn't get the same radiation as an adult, it is still a lot following 2 xrays.

It must be so difficult when you are seeing different consultants and I hope you soon get a definitive diagnosis and some continuity.

Great you are doing physio with your little one. Have you seen the bubble pep form of physio which tey use at Great Ormond Street - looks fun. That along with physical excercise - all will help with lung clearance.

You culd always 'phone BLF - they have brilliant nurses who are knowledgable about paediatric lungs. Always forget their number but someone will put it up here for you I am sure.


Jusy profile image
Jusy in reply to cofdrop-UK

Thank you so much

Thank you everyone today with had the fibroscope and it was a much easier affair then the one we had in the uk. She was only under for 15 min and was discharged within 2hours. The consultant has said that her secretions were clear in form this time (looks like the three times a week antibiotic is working) but the bronchoi are inflamed. We are back for full results next wed for the cicula sample and also for the lab work on the secretions. A question I did not ask is is it normal to still have secretions even if they are clear? I also want to ask him about the inflammation could this be allergy / asthma (although she does not wheeze). Any thing else I am missing has anyone any experience of this?

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