Hi, my son is seven he has had 20+admissions to hospital for his chest, I have just applied for and received his hospital records. He has had six pneumonias and other respiratory problems, eight weeks ago he was in hospital with pneumonia we were in for 9 days it was worse than any other admission, his oxygen saturations deteriorated on day 4 while on constant oxygen prednisilone and iv antibiotics so much so that he was in the high 80's even when on 16 litres of oxygen , he was moved to a different bed with high flow oxygen 50%at 16 litres and just had an awful time, he was back in two weeks ago, so 6 weeks after that pneumonia, we were in again for seven days and he didn't respond well to iv antibiotics and constant oxygen again.... his allergy results came back and he is allergic to aspergillosis I have a follow up appointment on 16th august but I'm not holding much hope. Last admisssion we were told he had bacterial one day, viral the next, aspiration pneumonia one day and asthma the next one doc said it was the prior infection not cleared one said it definitely was not... I'm scared, I nearly lost him and he is taking longer to get well each time, what should I expect in regard to future investigations? Looking at his last X-ray radiology results it says bronchial wall thickening, patchy consolidation, opacificatioms in central parts of both lungs, , right mid zone/basal and left basal consolidation and atelectasis, , ill defined shadowing at the right base medically, , left basal consolidation and basal effusion, their are also right pericardial patchy opacites these are progressed when compared to previous X-ray dates 08/07/2017???? I am totally lost they are just from his previous 4 X-rays... I don't know if I should be pushing for further investigation or if that will be forthcoming but he is only seven and this has been going on since he was two... they fox him(for which I am so grate) then were discharged until it happens again? Sorry for the long post ... if anyone's even reading this... I'm just a worried mum!
Son 20+admissions chest related getti... - Lung Conditions C...
Son 20+admissions chest related getting nowhere fast!
I read your post and really feel for you and your dear son. It all seems so scary and very confusing. You only need one doctor to give you the facts and a proper diagnosis. I hope that doctor will help you. Sending good wishes to you. Xxxxx
Thank you , it's all very confusing I don't understand the terminology and I can't bare watching poorly x thanks for your response x
Thinking of you Rorojackson. Xxx
aspergillosis is foundin the environment SO this not much chance avoiding it.
Sure he could be colonized but might have underlaying immunity issues especially if pneumonia as hijacked his immunity.
Is hard and feel for you but your son as his age on he's side.
I would let doctors do oxygen steriodes and antibiotics making sure son is hydrated and the rotating antibiitcs
Then i would ask about immunty issues and can they check for underlying cause AND ask about IGM antibidy transplant if needed to buld his immunty up.
Yes they were a bit vague about the aspergillosis they said he was allergic to that and dogs from his tests six weeks previously... I have researched a little and am aware it is unavoidable but also would like to know if it is present in our house or garden in large quantities does anyone know of any air testing companies or if I should contact environmental health? We recently had a smell in our house when my husband lifted the floorboards there was a flood under the house, when our landlords plumbers drained the flood they said they couldn't find the origin of the flood but that it had been there for years as they could see tide marks of drying out? I'm worried as we have lived in this house for years if this specific mould /fungus could be present in high volumes? I might just be grasping at nothing but I just wondered if anyone knows any more? Thanks
I think it would not of helped or lifting floors.
Having allergy and being colonized i think are world's apart.
Even if your house is sterile streets schools are not LET alone toys.
I would try get to underlying causes as i don't think that amount of infections is normal.
I would ask about immunity issues and kids pneumonia vaccine ask doctors is it still working ask are he's antibody levels ok
I think your son as immunity issues AND given how sick lad was and hospitals are full of trainees THEY might be looking at sorting symptoms NOT the underlaying cause.
Thanks for your advice
I think son might have Selective immunoglobulin deficiency.
Caused by pneumococcal and aspergillus inter actions.
Guess thats why docs talk of infection then allergy DOSE cause doctors to do head scraching.
Most docs thinkwhen you pneumonia vaccine your set for life BUT i have had two as neitherpneumococcal vacancies are working on me.
So am looking at igm antibody therapy but given cost of injections doctors are playing at it or reluctant.
Also it was not my lung doctor that found out i had antibody issues but a nuroligest.
So don't be scared to ask doctors these things or questions.
Nothing wrong with wanting best treatment options for your son.
Thank you I know I'm his only voice and I am torn between being grateful for all their help and feeling I'm failing him through not pushing for further expert advice. I feel a. It helpless as I would expect them to transfer me without my push if it were necessary and am also not naive enough to know lots rest on budgets and cutbacks, it's a hard balance between neurotic mum and reasonable concern and expectations of care? Do you know what I mean?
Do agree about nurotic don't want to be like that .
Do understand AM sure when stable can ask to be referd to lung doc if not done already.
In mean time can ask or remind them about pneumococcal and aspergillus antibidy issues igm defiancy .
Is hard but am sure doing the best BUT the do get set in ways of doing things SO little remminder of things to check will am sure do no harm.
I had same with my dad and i made decion i would say things and ask AS its me who as to live with what if and if only's
Thanks again x
Hi
After reading your post, I can relate to a lot of what you are dealing with. My daughter who was 2 caught pneumonia and was really ill, she kept getting ill from re accurring infections. I have suffered with weak lungs since a child and became suspicious when I then became ill with pneumonia. I lived in an old farmhouse in Cornwall at the time, never suffered like this before moving there. The horse always smelt damp and I was constantly wiping mild and fungus off the walls. I even invested in 4 de humidifiers. After 7 years of ill health, I had enough and moved. The illness's stopped. Do not disturb anything in your house and if possible try to stay somewhere else for a few months and see if this helps. It's worth a go. And where ever you go buy a air purifier for the house.
I wish you luck x
Really? I would really like to find out if I could get an air test carried out... you can buy test online but reviews are pretty bad x thanks for your reply xx
Hi, your son could probably benefit from a referral to a Professor at the national Aspergillus centre at Wythenshawe hospital, Manchester. They take referrals from all over the UK and the experts in this field.
They may recommend anti fungal treatment.
Good luck x
Thanks, would that be something I should suggest or wait and see if it's offered? I was told about the allergy to aspergillus but it wasn't highlighted as a factor in what's making him have repeated hospital admissions, in fact it was only mentioned when I asked if his blood test results were here from the previous admission?
I would be asking.
You definitely need to be asking for a referral. You can request which hospital you are referred to, but there is only one specialist centre.
Allergy to Aspergillus can be detected in the blood serum or in a skin prick test. More tests may need to be done.
The professor's team team can be contacted directly at Wythenshawe, he has two Aspergillus specialist nurses on his team and I am sure they, along with others on the team should be able to help with any queries you may have.
I am under his care and attend the joint clinic with the severe asthma consultant at the Northwest lung centre at Wythenshawe.
Thanks I will put in an enquiry
I should be inclined to ask; I have learnt that if you don't ask you don't get, and it must be a miserable life for your little boy. He deserves more than hospital every other week, and so do you. Many blessings to you both xx
Thanks I will ask xx
I am not able to comment on your sons condition. Is your son being treated at on of the specialist lung hospitals if not then ask to be reffered
Best wishes to you bpth
No just our localgeneral hospital , I will ask at our follow up consultation, am I allowed to request a specific hospital without sounding like I don't have faith in the doctors who have helped him all this time?
You are entitled to ask for a second opinion. Please give the BLF Helpline a call tomorrow, They will be able to offer the best advice. 03000 030 555 during office hours. Good luck.
I will thank you I didn't know if they take general calls or if the forum was the best place to ask thanks again
If you live in England you are entitled to go to any English hospital. District general hospitals are good at the usual things, but generally baffled by anything out of the ordinary.
Thanks their care has been amazing, as in they have made him well every time, but I'm worried for the long term implications this is having to his developing lungs and his future lung health as an adult x
I do sympathise with your dilemma because I have experienced it for myself. I have problems which are very unusual and my local hospital gave me excellent care but admitted that they were baffled and sent me on to a centre of excellence. You are not criticising your local hospital, but you are fighting for the best care for your son's future. I do hope you can get the help you need xx
Sorry to hear about the health issues of your dear son. I have a link for you of Manchester Children's Hospital Respiratory Dept. There is a list of consultants. It does say by referral only but there are some numbers you could contact (probably cons secretarys, who would give you advice.
cmft.nhs.uk/childrens-hospi...
Depending on where you live this link may be useful
rbht.nhs.uk/about/our-work/...
Local hospsitals are not usually the best place for complex respiratory issues either in adults or children. Generally a large city you have access to would be preferable. Saying that if your son went in as an unplanned admission, he would most likely go into your local hospital, but they should liaise with his consultant.
It is natural that you feel hesitant to push, but it is also natural for you you to seek the best care for you son. You are his advocate and I feel to push you must - 5 years is far too long for you not to feel you have a clear indication of diagnosis and obviously feel a lack of support.
I am assuming your son has had a ct scan, if not that would be your first request.
If we can help in any way please don't hesitate to let us know, as there is usually someone around.
With love to you and your dear Son.
cx
Thank you for your response, no he hasn't had a ct scan they said it's too much radiation like 200 X-rays the doc said? They spoke about a bronchoscope but I will see if that comes to fruition from this coming follow up on 18 august? We aren't near Manchester but would travel anywhere x
Don't let him have a bronchoscope at this stage and before seeing a specialised consultant. It is far too distressing and won't tell them why he is getting pneumonias. They are just clutching at straws.
What makes you say that? What further investigations do you think would be beneficial? X
A bronchoscopy is just quite distressing. I really don't know why they say a ct scan has too much radiation. My great nephew has had several and they are non invasive.
That makes sense and I would guess when I was diagnosed as a baby bronchoscopy would have been the method used (although rigid) unless bronchiectasis (which is my particular condition) was more prevalent then. This was following double pneumonia and whooping cough.
Good on ya for fighting your Son's corner and getting his notes and also pushing for the next stage. It is much better for you all once you have a definitive diagnosis.
The two hospitals are great but if you envisage your Son's health issues to be longer term then you might want to check out some paediatric respiratory consultants at a hopsital at the largest city closer to you, or indeed check the resp cons within the UK.
There is a Mum of a child, now teenager with bronchiectasis on Bronchiectasis R Us. She is very knowledgable on being an advocate for her child and although your Son may not have the same condition as her dear daughter, I feel she may be helpful to you with regard to advocacy in the modern paediatric respiratory system.
It might be an idea to pop your post on there too and I am sure you will get a response.
Good luck at your next consulation.
cx
Thank you is this a forum like this one? I will have a look now, what is her username do you know? It would be great to speak to somebody who has fought their child's corner and how things worked out. Like I say the level of care he has received has always been wonderful I just can't help but worry they aren't getting to the cause x
What is she called please?
Sorry for delay. Been away for a few days and have had problems getting onto HU/BLF ever since. Hopefully ok now.
Unfortunately I feel it would be unethical to give out a person's name, even a username. I would not give out yours hun or anyone elses online.
You might want to just post the same as you have posted here and I feel sure, unless she is on holiday, this lady will respond as will many others. If for some reason she misses your post I could pm her but of course it woud be up to her.
Bronchiectasis R Us is similar to this. It is specifically for people with bronchiectasis and was set up by a young woman we all love to bits in 2004 because when she was dx there was nothing on the web to support and further inform people with bronchiectasis. They are generous of spirit, as they are here, and will help all they can.
BTW I believe they would give your son a GA for bronchoscopy as he is a child but you would need to check that out. It sounds to me he should definitely be seen by a paediatric respiratory consultant - you really can't both go on without a difinitive diagnosis. Please be assertive with regard to a referal.
love cx
Hi there, I really do feel for you. When I was a child I had one pneumonia after another and nearly died so many times. Eventually they discovered that I had bronchiectasis but in those days the treatment for it was non existent ( no antibiotics). Eventually after receiving a letter telling her I wouldn't survive my next pneumonia, my Mum found a doctor who started me on what is virtually the treatment that I have now. I am now 67 and have had a full life.
Your son does seem to have complex issues. Has he had a diagnosis?
I do think that ongoing active infections do need to be treated until they settle down and you can go on with life, dealing with whatever underlying condition he has. Pneumonia does take a very long time to get over and he will be lacking in energy and sore for a long time.
Aspergilla is a fungus which lives everywhere. Some people react to it and need anti fungals but many, such as me, may show a reaction on and off but their immune system fights it off. The majority of the population who do not have blood tests etc because they are generally well are reacting to it.
I hope that he has a paediatric pulmonary specialist whom you can form a relationship with. They should explain what they have found and listen to your concerns.
I am thinking about you and your son and do hope that they get to the bottom of it and that things start to settle down.
No he hasn't had a diagnosis, they just treat him and let us go... he's very anxious As am I, he hears the different doctors words and he's frightened of each visit, needles and being in bed for such a long time at seven is very hard! Hoping to get somewhere at this consultation, thanks for your kind response xx
Having read all of the good advice on here I really do have to ask
What is your GP doing?
You need to cut through all of the nonsense at the non specialised local hospital
Go to your GP and demand an urgent referral to a paediatric respiratory specialist.
This is what they are there for. Both you and your son deserve some positive action.
My go isn't really involved, my son has no problems health wise between episodes and when an episode happens, it happens within a matter of hours so we go straight to the hospital. Having said that from his hospital admission eight weeks ago and agIn two weeks ago, he has not been 100% at all, can't do as much and is a funny colour... 😔😔😔Thanks for your kind words and advice x
littlepom is right. Your GP needs to be involved to refer your son to a centre of excellence with regard to paed resp cons. It seems your local hospital, even though you say he is treated very well, are not getting to the bottom of the problem and are not following it through with a proper dx and therefore a proper treatment plan.
love cx
(edited by moderator)
Also, may I suggest if your son is admitted to a specialist hospital away from home they may have their own accommodation for parents at low or nothing cost. If you don't ask they may not suggest it. I know that Royal Brompton Hospital has relatives' accommodation and also Great Ormond Street Hospital (both in London)
My love to you and your family. Christine
With a child you'll get a bed in the cubicle with your child at Brompton X
Just been on Bronchiectasis R Us and thought you might be interested in this. There is a post from a person who has a 5 year old child. The little one is going to have a CT scan as they suspect he has bronchiectasis. Some very helpful replies.
love cx
My son has been breathing hard these last few days, his chest is hurting upon physical exertion, he went to bed with chest pain last night, his heart is slightly high but his oxygen sats are ok... I feel like I'm just waiting for it to happen again 😞 I have his consultation on 16th, the respiratory nurse who called me back from British lung foundation said to ask what preventative measures they are going to put in place, and suggest it is time we go to a specialist children's hospital, can anyone think of any other questions I should be asking? Thanks... worried mum
Good morning Rorojackson, no wonder you are worried , your son is awefully young to have all that lung damage, you need a diagnosis and treatment as quickly as possible before anymore damage is done. He is obviously has a weakened body from all these infections and needs a bit more extra care from the doctors ect. Good luck with getting a diagnosis and proper treatment. Take care both of you will be thinking of you xx
Thank you for your kind response xxx
Hi, it's your consultation day today so thinking of you.
I'd like to commend you for the wonderful care you give your son. Never ever let anyone tell you otherwise. You are giving him the best possible future.
As you are discovering, there are several lung conditions and it takes forever to get a diagnosis. Hopefully your son will have a general anaesthetic for a ct scan - the best possible for diagnosis. It may be extra radio waves but hopefully he'll need far fewer X-rays once he has a diagnosis.
Yes, we all have a bit of aspergilis in U.S. But few are allergic to it. It's found anywhere there is damp, like autumn leaves, farms, everywhere really in our climate. Sadly parents aren't warned of the dangers even when a child has asthma. I'm mildly allergic to aspergilis but greatly allergic to mould.
Looking back, my big problems started after I'd had a soaking brick wall taken down (pipe leak behind bathroom tiles, the bedroom the other side was also soaked). Victorian bricks, mortar and dust, all damp. Insurers sent an industrial dehumidifier & over weeks gallons of water was collected, grim.
Anyway, I sincerely hope today goes well for you. Keep up your fantastic care and do take care of yourself too. P xxxx
That sounds awful for you, we have had a leak under our house and when it was pumped out several months ago they said it had been there years, so I do worry as he has came back allergic to aspergillos. I had my consultation and he said he is referring us to a specialist children's hospital so we are just waiting for our letter. His X-rays looked awful, he has progressive changes? Since his admission in may he can't exercise without having chest pain? Not being out of breath, pain that makes him cry 😔😔😔 I'm ready to implode I can't bare watching him upset xxx he keeps looking at his brothers playing and getting upset he can't join in like he used to xxx thanks for your kind words xxx
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