So here goes, hello I am Natasha. My daughter is five years old on Sunday. She is un-diagnosed and has carried out lung function tests which have determined she is not asthmatic by consultants now at Derby and Great Ormond Street. She lives on daily, slo-phyllin, montelukas, seretide, steroids in winter and azithromicin, and when needed atrovent and salbutamol. Without these medications my daughter would be living in the hospital, mainly in HDU. She has always deteriorated fast up until a year ago and has been put on the animophyllin sister drug slophyllin, a huge medicine for a small child. In the summer she will be taken off all medications as they feel it is masking an undiagnosed condition whilst being treated with asthma meds.
Her symptoms whilst she was younger was the typical sound of a child with a viral wheeze, each time she presented into a&e they would put it down to viral but knew not to mess with her as she had suprised them on numerous occasions including having to be ventilated, this usually started a wheeze leading onto the general working hard, tracheal tug, recession, motled skin ect... Now as she is older she starts with a cough which eventually turns into a wheeze, now heres the catch. She has had scans on the heart (all is fine), she has had a CT of the chest (no sign of shadows), she has had cameras down her lungs (no sign of obstruction), lung function tests perform well and generally all her results are great.. ALSO NOT A SINGLE ALLERGY IN SIGHT. So heres my question, my daughter has been resusitated twice, ventilated and intubated, she has required HDU admissions borderline resusitation over 20+ times to the point i lost count at the age of 2 (up until they piled her with meds at the age of 4) why does my child get so critically unwell? Has anyone been through this?
In the summer the plans are to take her off all medications in hospital as they feel the meds are masking what is wrong with her. Very nerve wracking! Its a positive as they want to look more in depth but the risks along side are a scary thought. Great Ormond have mentioned they dont see many like my daughter so is there anyone else going through this?
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Nsaunders91
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That’s terrible my heart go’s out to you and your daughter.
Only thing I know can make you that sick is immunity issues , virus , sepsis
I think even tho worrying times what they propose might work AS like thay say all meds ARE masking something might even be contributing.
Guess I would worry about due vigilance IF thay did such a thing SOUND like you daughter is hypetsencative to everything.
Virus & Inflamation are only things I know can do that AND that dose cause lot of problems.
Only other thing I can think of is under development Tricia n Lungs Cartilage given wheezing.
My thoughts here are: how can they be sure she doesn’t have asthma? Lung function tests can be totally normal even in people with severe asthma and if she’s on all those medications, it’s possible they’re the reason her lung function tests are fine. In Type 2 Brittle Asthma, people’s asthma is well controlled between attacks with lots of medication, and often lung function tests are totally normal. But attacks come on fast and hard and are often life threatening or near fatal.
Other things to consider are combinations of things, such as cystic fibrosis and asthma. I would also raise Primary Ciliary Dyskinesia with the docs if they totally rule out asthma, because PCD often goes undiagnosed until adulthood by which point it has become bronchiectasis and usually quite severe by that point.
Definitely consider my first point though; T2 brittle asthma would fit as far as I can tell (but I may be missing something)
In fact, upon reading your post again, I would say she fits T2 brittle asthma perfectly. She is:
— on a lot of medication which appears to work between attacks
— has the wheeze
— deteriorates very quickly and very severely
— has the ‘tug’ that you mentioned
I would certainly bring this up with your consultant at GOSH and ask how this has been ruled out, and possibly get a second opinion. If they do want to try taking her off the medication, they absolutely must do that with her as an inpatient because if she is a brittle asthmatic, taking her off all the medication could lead to her having an attack which would be fatal if not treated literally immediately. There wouldn’t be time for an ambulance.
I don’t mean to scare you or anything, it’s just really crucial that they do that, and if they say they can do it as an outpatient then r u n
No how terrifying. My niece was admitted to Shriners hospital for children she was there for six months and couldn't figure out was wrong. They were releasing her and another doctor from Seattle just happened to see her and they were talking about the case and he had watched her walk and suggested that they test her for ra and that is what she had took six months in hospital and I don't know how many tests it has been a long and awful journey. She is alive though and we love her I am very sorry for all of you
I do feel for your daughter and the rest of her family, my three were diagnosed as asthmatic as children, but they all suffer from allergies and your daughter doesn't.
My two year old grandaughter has a wheezy chest and a cough a lot of the time, but not on any medication .
My middle daughter had eczema practically from birth, and coughed for years. The youngest was in and out of hospital, until she was given just a brown steroid inhaler.
I am asthmatic too, and have problems with some inhalers.....they make my chest tighter after a while.
your daughter will be carefully monitored while they withdraw the medications, it could be like me, one of her medications is not helping.
I took Serevent once and suffered from bronchospasm .
I have a consultation next week about Ventolin, problems with that.
She will be in the best place for treatment.
My three are adult now, take Ventolin or Bricanyl very very rarely.....one can't take Ventolin...but they are still allergic to various animals and foods, so are careful.
I also wonder if there is a genetic link as is in my family, together with a tendency to over breathe or hyperventilate ....my grandmother and mother were noisy , always puffing breathers. My daughters and I tried Buteyko Breathing exercises , I found them helpful but expensive , and you need a reliable trained teacher.
Best wishes to you all, your daughter will be in good care, oxygen at hand when they try withdrawal.
I am so sad to read about your daughter. As one mother to another, I truly feel your pain. It must be so frightening and heart-wrenching to see her suffer and the worst part is as of yet not having a firm diagnosis or course of treatment for that diagnosis.
I'm afraid I cannot suggest what may be the cause of her illness and I don't think any of us here are qualified to give any definite answers. However, I will say, she has the best care available. Great Ormond street hospital is considered to be one of the top five children’s hospitals in the world. I am certain they are and will do everything to keep her safe when they stop her medication and continue to diligently try to find the root of the problem. It took six months to diagnose me with several autoimmune diseases and close to a year to get a firm diagnosis of my lung disease. Your daughter is so young, I think it is far more complicated for them to reach a consensus.
I hope you have a good support system so you can also have a rest and a break when you need it. ☕🌿 Please don't lose hope. I sincerely pray they will be able to make a diagnosis, treat her and ease her suffering. Sometimes I find hope when things are really bad, that they can only get better. It is often the last key in the bunch that opens the lock.
Please keep us updated. Sending all the love and warm wishes I can muster to you both.
Hi there. I couldn’t possibly offer insight into what the root cause might be except perhaps something with her immune system. I have lupus and a low immune system but not a single antibody to support this diagnosis so I’m very open to the fact that not everyone fits into a neat box.
My daughter had respiratory arrests at 2 weeks old, she was actually in my arms as she slipped away. It is quite the worst thing imaginable. She had several rocky years before growing out of ‘it’ whatever ‘it’ was and is now 13. It’s incredibly hard to juggle life when you have a little one in hospital - I’ve had 2 of mine in ITU and at one time, the baby was 50 miles away with 2 toddlers at home.
I do hope the answers come soon. A big hug to you and your daughter xxx
Dear Nsaunders91, all the comments are for your Reaching out for help. As our Dear Caspiana has said, you can only do what you know is best for your Little Girl, and that GOSH are the Best Childrens Hospital there is. I am sending loving Gentle hugs to you Both, and all the Nursing staff who are doing what they can for your Little Girl. I will always be thinking of you my Love. XXXXX
So sorry to hear about your daughter - must be awful for you seeing her like this. Hoping there is a break through soon with her diagnosis. Take care. Sending you and your family lots of hugs x
I'm so sad to hear about your daughter. I am not a medical person so can't give you any reasons that your daughter is suffering. It's good that she is going to GOS. They are the best. I do hope you keep us up to date how's she's doing. Bless both of you. You will be in my prayers.
Thankyou everyone, Sorry i should of mentioned Great Ormond street have seen her once, they was a second opinion as we usually see derby and Nottingham. They reviewed her at Gosh did allergy checks and lung function and went through her back ground. I left gosh feeling very heart broken as they were unsure as to why she is the way she is and said there was nothing more they can do as she is already on everything. They said if she had an allergy they would of had more to go off. They sit in the background so if she ever needs support from them we can request it back. But she is discharged for now from gosh and we was advised to continue on the plan from derby.
Thankyou all for your kind words, as sad as it is, feel comfort in the fact she is very confident and a happy child and knows her body well. She doesn't ever let it stop her and I admire her for that. She reminds me that even on the worst days that if she can do it, so can I. xx
Hi Natasha, I am so sorry you and your daughter are going through this. Waiting for a diagnosis is always very hard. In your little girls case it is particularly upsetting as she is so young and is on so many drugs. Take hope from the fact that they are going to start from scratch, I understand you will be scared but starting again with no meds is probably the only way you will get a diagnosis. I had to go through the tests twice before being diagnosed but what joy when I got the diagnosis and it was a condition they could help. I am praying that your little girl also will have a diagnosis which can be helped. Good luck and please come to our forum any time you feel you need to share, someone on here will always answer. Maximonkey
Hi there, I'm so sorry for all this. So terribly worrying.
Can I suggest you call the BLF help line during office hours. The number is: 03000 030555
They can give you expert guidance on how to get the best help for your daughter. They're trained, we're only patients.
You could also put the same post (minus the photo, it's a bit dodgy in this day and age on an open forum) on the ashma uk forum (find it in 'my hub' other communities) I know there are several parents of lung sufferer children there and it has its own help line too.
There are several lung disease, many would recommend The Royal Brompton lung hospital.
I wish your daughter the very very best., you too as her mum. Peege
Oh bless you and your daughter, very sad and worrying for you both. I hope Grt Ormond Street get some answers when her meds are withdrawn. She’s in the best of hands xx
Something that i have noticed over the years is that i have intollerances to certain foods. This does not show up as an allergy as it does not involve the imune system.
For me it is fish and nuts are the worst but i also believe i have an intollerance to salicillates.
These are difficut to identify as the wheezing often is worse the next day or the day after.
With sallicilates that is really difficult. It is in ibruprofen and asprin. Many food contain it too but it i keep to low or moderate foods with sslicilates then i ok.
Have a think about it. Look at the website. Food can make you ill.
I hope you find an answer.
Ps the sallicilate thing was suggested by my specialist.
I cannot begin to imagine what you are dealing with. My heart aches for you and your precious child.I cannot add anything more than GOSH is simply the best place she could be. Sorry I actually cannot find the right words. I will keep you in my thoughts and prayers and send the very best wishes possible for you to find answers so that your little one can get back to a normal life with you.
May your god be with you.
P.S. as someone has already said, post here if you need to vent or you feel overwhelmed so all here can support you. Do look after yourself and stay strong.
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