Welcome to our Hollyoaks blog.

Over the coming months, we will be following Dee Dee's storyline in the Channel 4 soap and exploring encephalitis in more depth, featuring real-life stories as well as answering your questions. We hope to update the blog regularly going forward.

If you have any questions you would like us to answer, please contact us.

Wednesday, September 19 - Dee Dee doesn't recognise Tegan due to her condition, leading to anxiety for Tegan.

Chapter One of Encephalitis in Children. A Guide can help viewers to understand the effects that drugs used to treat encephalitis can have on children. On the whole, the benefits of such treatment outweigh the bad.

Prompt therapies offer a good chance of substantial recovery in the majority of children. As they improve there is a reduction in the amount of antibodies in their blood when the test is repeated. Some of the drugs have potential side effects but also benefits as they reduce the inflammation of the brain. The risk of harm from any of these side effects are minor compared to the good that they do in patients with autoimmune encephalitis. However, in each patient the risk-benefit balance may vary.

Please note that our support team are here for you if you need any support or information.

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Thursday, July 26 - A mum speaks about what life is like for a family whose child is affected by encephalitis.

Vicky is a real-life Diane Hutchinson. 

Her daughter, Isabel, was fell ill with encephalitis as a baby and, in the following clip, she talks candidly about what like is like for a family whose child has been affected by inflammation of the brain.

You can help us support more children like Dee Dee and Isabel by giving a small gift towards our life-saving work by clicking on the red button above. Thank you.

Tuesday, July 17 - Tegan plans to surprise Dee Dee with Disney princesses, as her application to go to Disneyland is declined.

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Today's episode also saw Tegan Lomax (Jessica Ellis) threaten to reveal hers and Diane Hutchinson's (Alex Fletcher) big secret.

The duo were involved in a baby swapping scandal five years ago, when nurse Mariam Andrews switched Tegan's biological daughter Dee Dee, with Diane's daughter Rose.

Both mums agreed to stick with the kids they'd been handed in the horrific child switch – until now, that is.

In scenes that aired this evening Dee Dee, who's been hospitalised with autoimmune encephalitis, cried "I wish Tegan was my mum."

Moments later Tegan addressed Diane outside Dee Dee's room and attempted to brush over the awkward outburst but the pair ending up arguing.

Diane told Tegan: "I know, it's yours. From now on, anything that involves Dee Dee goes through us."

But Tegan wasn't having any of Diane's insensitive orders.

"I am sick to death of being told what I can and can't do with my own flesh and blood,” she said. “What if all this fails? What if I never get the chance to tell her how much I love her?"

Tegan then snapped: "This might be my only chance. I want to tell Dee Dee that I'm her real mum."

Our View

Although the subject matter of July 17's episode is unlikely to happen, it does pose the question about how the impact of encephalitis can be a bewildering experience for families.

There can be strong feelings among family members and, in general, be a chaotic and confusing time for all involved.

Encephalitis is a family affair, and some family members develop severe emotional responses. If struggling, emotional support, counselling or family therapy may need to be considered.

Chapter 5 of Encephalitis in Children- A Guide looks at the impact of encephalitis on the family and ways forward for them to cope.

Read more

Friday, May 25 - Tony and Diane begin arguing in front of the doctor and Dee Dee

Tony and Diane are continuously arguing over Dee Dee’s condition. Tony thinks Tegan should know but Diane disagrees. Dee Dee throws her cup and begs them to stop. Later in the hospital, the stress is getting to Diane and Tony still and they begin arguing in front of the doctor and Dee Dee.

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Our View

The impact of a family member or friend being unwell, alongside a lack of sleep, no time to eat and no appetite, among a myriad of other issues, can have a detrimental effect on loved ones. As we are seeing with Diane and Tony, family members may feel helpless, isolated and confused.

Acknowledge your emotions and be aware that other family members may react differently. Some hospitals provide Family Therapy, which may help you deal with the stress and emotions at this difficult time. Ask a member of staff if this is available in your hospital.

If you would like to find out more about you can expect as a family member or friend of someone affected by encephalitis, please read our factsheet At the Bedside

Friday, May 11

Maddi, like Dee Dee, was affected by autoimmune encephalitis at a very young age, sharing some of the same symptoms as her counterpart on Hollyoaks.

Her mum, Tricia, has written about her daughter falling ill with Anti-NMDAR Encephalitis. It is a very interesting and well-written insight into the impact that the condition can have. 

Read her story

Thursday, May 10 - Dee Dee is administered with her medication.

Yazz confronts Tony and Diane about their complain against Misbah. Later, Diane decides to withdraw the complain after finding out what was wrong with Misbah.

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Wednesday, May 9 - Dee Dee is administered with her medication.

Misbah is administering Dee Dee's medication but goes on to give her more than she should which could have killed her. Dianne decides she is going to make a formal complaint about Misbah but Tony disagrees.

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Our View

When it comes to treatment for encephalitis, there are two aims - to treat the cause and to deal with the symptoms.

Key facts about the treatment of encephalitis

• There are two main types of encephalitis: Infectious when inflammation is caused by an infection (virus, bacteria, parasite, fungus) and Autoimmune when inflammation is caused by the body’s own immune system acting inappropriately.
• Treatment has two aims: to treat the cause and to deal with the symptoms (e.g. seizures, agitation; excessive movements)
• When encephalitis is firstly suspected, treatment with a drug called acyclovir is started because herpes simplex virus encephalitis can be deadly without aciclovir. There are guidelines for the management of viral encephalitis.
• If autoimmune encephalitis is suspected, treatment with immune therapies is started. These therapies have the role to stop the immune system acting inappropriately. In addition, some patients are treated with other drugs such as rituximab and cyclophosphamide. Every patient is unique, and so there is their illness and the response to the treatment. Therefore, the treatment recommended by a doctor will be based upon each patient’s signs, symptoms and test results. Unfortunately, all medications which target the immune system, may come with potential side effects, especially infections.

Factsheet on immunotherapies

• As autoimmune encephalitis is relatively new discovered, there are no definite guidelines for the management of this type of encephalitis. Research and training for professionals is crucial.

Tuesday, May 8 - Dee Dee is diagnosed with encephalitis

Diane and Tony are devastated when Dee Dee is diagnosed with encephalitis and she’s not responding to treatment.

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Our View

Encephalitis (inflammation of the brain) is a complex condition which does not have a standard test for diagnosis.

Key facts about the diagnosis of encephalitis

• Diagnosis is made by looking at the symptoms, the results of the tests and the response of the patient to the treatment.
• Analysing cerebrospinal fluid via a lumbar puncture is crucial to the diagnosis of encephalitis. A lumbar puncture should be performed as soon as possible.
• Other helpful tests are neuroimaging (magnetic resonance imaging MRI, electroencephalography EEG) and blood tests.
• All these tests are looking for signs of inflammation and the presence/absence of infection and antibodies.
• In autoimmune encephalitis CT scans of the body to look for tumours, which may be the cause of encephalitis, are also performed.
• Sometimes, the results of the tests are negative, but the patient is still very poorly. This can make family members very worried and confused. This is because encephalitis is a complicated condition. Some of these tests may need to be repeated before a definite diagnosis is made. Despite all these tests, in around 37-62%* patients, no cause of encephalitis can be found.
• Diagnosis tests are also very helpful in eliminating other diseases that have similar symptoms and signs as encephalitis.
• Understanding the history of the illness (especially regarding the changes in behaviour and personality, but also travel history) from the patient and their family members is very important in the initial consideration of the diagnosis of encephalitis.

More information on encephalitis and diagnosis

Information for Health Professionals

Diagnosis of viral encephalitis

Latest research on diagnosing autoimmune encephalitis

*Granerod J , Ambrose HE , Davies NW et al. Causes of encephalitis and differences in their clinical presentations in England: a multicentre, population-based prospective study . Lancet Infect Dis 2010 ; 10 : 835 – 44 .

Glaser CA , Gilliam S , Schnurr D et al. In search of encephalitis etiologies: diagnostic challenges in the California Encephalitis Project, 1998–2000 . Clin Infect Dis 2003 ; 36 : 731 – 42 .