A mum has described the horrifying moment her five-year-old son’s skin fell off due to a rare condition she thought was a rash.
Lennon Townsend is non-verbal and has a number of medical conditions including epilepsy and Hirschsprung disease, for which he takes a number of medications.
Last month, he broke out in a rash that persisted so his mum Nicola Grantham took him to Blackburn hospital, LancsLive reports.
Doctors that the rash was viral and it should sort itself out but then Lennon’s carer noticed there was some skin missing from his chest.
Nicola also started noticing the peculiar condition, as every time she would pick Lennon up pieces of his skin would fall off.
He has since been diagnosed with the worst form of Stevens–Johnson syndrome (SJS) which is Toxic Epidermal Necrolysis (TEN).
It begins with flu-like symptoms and a few days later the skin begins to blister and peel forming painful raw areas.
Nicola said: “It was horrendous, when I went to get him I noticed there was a piece of skin missing from his face.
“Then when I picked him up I noticed wherever I would touch the skin it would fall off.
“Because Lennon has a number of conditions I have access to Blackburn hospital so took him up. They originally thought it was Scalded Skin Syndrome however and he was placed on antibiotics.”
After consulting with the Manchester Burns Unit, the decision was made to transfer Lennon from Blackburn to the Royal Manchester Children’s hospital.
He was in so much pain the burns team made the decision to sedate him in order to move him.
Once at Manchester he went through a process known as debriding in which doctors peel the skin off to prevent infection.
The mum-of-two said: “It was really unsettling, the skin just kept peeling off. I think they knew at that point that it wasn’t Scalded Skin Syndrome and it was something more serious.
“Once they done the debriding process he really did look like he’d been scalded. At the moment he’s sedated for the pain and he’s in a stable, but serious condition but is well ventilated with no problems breathing.”
So far, doctors think the skin condition is a reaction to one of the forms of medication he was taking and it’s been a process of swapping the drugs he’s given, in the short term, to see if it stops the reaction.
The medical experts said that people can be on medication for years and be fine and then suddenly have a reaction.
Once this has been identified they can then investigate any long term effects the skin condition may leave.
A worrying aspect is that the condition can go internal and it has gone into Lennon’s stomach lining.
Last month, Lennon had a tube fitted in order to provide him with some milk.
His eyes are regularly checked to make sure they’re not affected as it can cause blindness and so far his mouth, which can cause severe complications, is clear.
Nicola said: “They can’t 100% tell us that it is the medication that’s done this, it’s just a day-by-day process and then when we get through this it’s going to be months of treatment in the burns unit.
“It’s a case of constantly observing him and looking at his stats. As he’s non-verbal, it’s hard for him to communicate his pain and it’s going to be with any long term effects when he gets older.
“I’m staying positive however and he’s got a wonderful team of doctors and nurses who not only look after him but also us.
“They’re from all different departments – neurologists, dermotologists, plastics surgeons, physios, burn physios, dieticians and more.
“It’s really good because they all come in at once as a team with their findings which re-assures us and stops information being lost in translation.
“The poor nurses in their full PPE too. Lennon looses a lot of fluid so they have to keep them warm with heaters all the time and the nurses come in in all their gear.
“They must be boiling! I really can’t thank them enough for all they’ve done. It’s been like a military operation to look after him and I’m ever so grateful.”
Lennon has a sister, Poppy, aged six, who can’t currently go to school because if she catches Covid-19 it could be passed on to Nicola who needs to keep coming to see Lennon.
Nicola’s partner’s grandad is a retired teacher and has been homeschooling her.
Visiting is also problematic due to Covid and Poppy can’t see her brother to see how’s he’s doing.
The family are constantly having to eat out and stay in hotels which is costing them more money by the day.
A Facebook group Nicola joined called Beauty and the Beast, which share make-up tips, have never met her in person, however heard of the troubles the family are going through and decided to set up a Just Giving page to help.
So far Nicola has had well wishers and donations from as far as Australia and America.
She said: “There are no words to describe how I feel the fact that they’ve took it upon themselves to do this for us and also with all the well-wishers from all over the world. It’s not all doom and gloom for us, we know a lot more about Stevens- Johnsons syndrome now.
“There’s not a lot of info out there but I’m learning and hopefully they can identify which medication has caused this if it is that. I don’t blame anybody for this as if it is a reaction he could have had one at any time.
“Lennon isn’t the only child in this situation, he might be the only one with his condition, but in the ICU we’re all in it together.”