Anita

Oliver, aged 2, is Anita’s youngest child and has Downss syndrome and an eye condition called Nystagmus. He has flu like illness symptoms all through winter and sometimes these are severe. Despite this, Oliver is a really happy smiley toddler and loves being around people.

Oliver has Down’s syndrome and an eye condition called Nystagmus. He also has a hole in his heart. Oliver is seen by the consultant and gets regular check-ups from the relevant hospital departments. He is not on medication but has physiotherapy every day. He can’t walk or talk yet.

Since birth Oliver has had frequent bouts of cold and flu-like illness that with various degrees of severity, last throughout the winter months. When ill, Oliver develops a high temperature that can last for two to three days, breathing difficulties, a cough and excess mucus. He has bouts of sickness almost every single day three to four times each day just to clear his chest. Anita says it’s hard to see him coughing and vomiting so much.

For the most part, Anita manages his symptoms at home with medication she buys over the counter but on two occasions he developed eye infectious and he was prescribed antibiotics. She thinks that in general, health professionals tend to be very dismissive of viral illnesses and do not provide information or advice on how to manage an infection. She is of the view that the constant infections have affected the progress Oliver could be making with regard to his walking and speech. Anita uses online parenting forums for children with Down’s syndrome.

Regarding antibiotics, Anita is aware that they do not work if you have a viral infection. But, she recently found out that the child of a friend of hers, who also has Down’s syndrome has been on a small dosage of antibiotics during the winter months and does no longer have infections of the severity or duration that Oliver has. Anita will raise the possibility of prophylactic antibiotic treatment for Oliver when they next see his consultant.

Oliver suffers from sleep apnea and is up throughout the night. Viral infections worsen his condition with him waking up to fifteen times per hour. Anita is hopeful that the removal of the tonsils and adenoids with improve his quality of sleep. An indeed of the whole family!

Oliver is a really happy smiley toddler that likes to be around people and loves going to nursery. His older brothers are brilliant with him.

Oliver usually has similar symptoms when he has flu-like illness. Anita treats him at home rather than go to the GP as she knows antibiotics will not be effective in treating his virus.

Age at interview 41

Gender Female

Do you think all his sort of episodes of sort of flu or flu-like illness are similar?

Yes. Yeah he gets a temperature. He gets the croup with it. He gets, yeah, very hoarse, very mucusy. Well yeah they’re about the same symptoms every time. And that’s why I think I know what it is every time because it’s. There is no change in it. It’s, it is what it is.

Ok so it is the same. Yeah. And the fever for how long does it last?

Couple of days, two to three days. He can have Calpol although sometimes it doesn’t, doesn’t change it. It’s just literally a case of stripping him off and letting him cool down.

Ok and regarding his overall condition when he’s ill with this flu-like what do you need to do differently?

He drinks more because he does get, he’s off his food. So he drinks, he does drink a lot more but sometimes he doesn’t want to drink because I think he gets a really sore throat. And that’s the thing isn’t it, getting fluids in you.

So regarding when he is ill you don’t tend to go to the doctor’s?

I don’t know. I don’t if he doesn’t need, like I say I’ve been to the doctors with him previously, same symptoms and everything else and it’s just viral. That’s the answer. Everything is viral. It’s viral. It’s a viral infection. That’s all you tend to get and obviously viral infections they don’t prescribe anything for anyway so I don’t tend to go.

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Anita would prefer doctors to refer to Oliver by his name in letters and notes instead of calling him a Down’s boy.

Age at interview 41

Gender Female

Is there anything you would like to say to health professionals who are looking after children with?

I think children, I think you should see the child before they see the diagnosis. That’s my biggest thing. Most times Oliver has not been called Oliver he’s been called a Down’s boy. He’s not a Down’s boy. He has Down’s syndrome. It doesn’t define him. He’s not. It’s a small part of who he is. Our biggest bug bear, you know. I’ve had letters from consultants again not used his name, Today I saw a 2-year old Down’s boy’, and I’m like, no he’s not a Down’s boy, he is a child who has Down’s. There is a huge difference. And I think there’s, I think there’s a lot of people who do feel that way I think. There’s a lot of labels put on them and they don’t know, you know. Sometimes it’s easier to call them by a diagnosis but you wouldn’t say. You wouldn’t call him by another diagnosis if it was something else. They just see Down’s syndrome seems to be acceptable to say a Down’s Syndrome. They are not a Down’s Syndrome.

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