Sorry for the really long message but I’m trying to give as much information as possible because my son’s condition, is currently undiagnosed, despite being under the care of some really amazing specialists, so I’m hoping someone can recognise some of the things I’ve written and help narrow down my son’s condition.
My son, who is a twin, and is now 7, has had two problems for many years now:
- Recurrent croup with any virus or bacteria, even a common cold since he was 6 months old. We end up at A&E about 5 times a year especially in the winter months. Sometimes the nebulisers work and other times he's had to have adrenaline and he also had to be intubated once in December 2018. His croup appears to be getting worse as he's getting older and we're now allowed to keep dexamethasone at home as rescue medication which we've had to administer 5 times a year before taking him to the hospital.
- Persistent irritant cough which started in February 2018 after he gpt over an illness which lasted 10 days. The illness resembled flu like symptoms along with vomiting, diahorrea and high fever.
My son has been under the care of a paediatric specialist since he was 2 and was thought to be asthmatic (this wasnt an official diagnosis but a feeling by his doctor) so and was prescribed a bunch of different medication including Salubutomol inhalers, beclamethasone, cetirizine hydrochloride, montelukast, nose sprays like flucticanose, and also the atrovent inhaler. All these medications were given in different combinations at different times to see if any combination would work. Nothing helped so the feeling now is he's not asthamatic.
Since he was intubated in December 2018, he’s had an MLB where they found two cysts on his voice box which the surgeons believe had appeared as a result of the intubation tube. While the cysts were on his voice box, the persistent cough appeared to go away. As soon as the cysts were removed the persistent cough came back. When we ask my son what he feels and why he coughs, he says he feels an itch in his throat and hopes a cough would take the itch away. The cough frequency increases significantly with activity. And the cough frequency definitely increases when unwell where he coughs every 10 seconds and this frequent cough always ultimately turns into upper airway restrictions where he requires his rescue medication. With the persistent cough being that frequent he says it’s difficult to breathe and finds it hard to speak. I don’t believe this is croup every single time but o feel his body’s response to any virus attacking his body is for his upper airway to close up.
He has also had a bunch of blood tests and a bronchoscope. The bronchoscope found a lesion in his upper right lung so for that he’s been prescribed ciprofloxin for 2 weeks and a Zithromax for two sets of 3 months.
His blood tests revealed the following:
IGE 583 (normal is up to to 56)
Eosinophils - 0.6 (0.4 is normal)
Dog allergy 0.66 (normal is 0.35)
Grass pollen greater than 100 (normal is 0.35)
At the moment, no one is really sure why he gets an irritant cough (and obviously might have to do with the elevated IGE markers) but why this them turns into recurrent croup is unknown.
We have also been asked to stop the Seretide as the evidence is suggesting he’s not asthmatic.
There is also suggestion that elevated IGE markers can lead to cancer, so that’s always a worry of ours.
Please post here if you recognise someone with similar symptoms because my son’s doctors are completely baffled despite several consultations amongst themselves and in between the respiratory team and ENT specialists.
I’d be really grateful for any feedback or help us get closer to diagnosing my son’s condition.