Ellie was born on 20th September 2011 via c-section. She was a healthy baby with mild skin issues which deteriorated once I finished breast feeding when she was 6 or 7 weeks old.
Ellie experienced her first flare up then and I had never seen anything like it in my life. Her poor beautiful face was angry, red and sore. I remember taking her to the doctors where we were told that it was cradle cap and we were given E45 cream (this makes me cringe now as I know how nasty this can feel on sore skin. As you can imagine, her skin did not improve and I put my baby girl to bed one night and woke up to her being covered in yellow, crust which was leaking and my beautiful baby girl smelt like a wet dog. It was so pungent I’ve never smelt anything like it in my life.
Another trip to the doctors who decided she had baby eczema which had a fungal infection in it. We were prescribed an anti fungal cream and hydrocortisone. I was very naive to skin disorders at this point and the thought of putting a steroid cream on my little innocent baby filled me with absolute dread. So, we used it and like some kind of magic it worked. Remember I was very naive and some what uneducated in steroid use at this point. So, the eczema cycle started and the learning curve began.
During this stage, I recall getting so much advice from lots and lots of people. “Use olive oil” one said “don’t use steroids” said another. We used hypoallergenic formula to no avail. My head was literally spinning with what to do. People have such lovely intentions but what is a miracle for one, isn’t going to work for another.
It was horrible seeing my little girl in a lot of pain. It affected the whole family. We all felt pretty helpless with what to do.
It was limited to her face until she was 5 months old. At 5 months old she was admitted to hospital and treated for meningitis by IV antibiotics. Thankfully she made a full recovery. This seemed to be a turning point for her eczema as from here on it spread slowly all over her body.
I was still very naive when it came to how to treat eczema. I was certain it must be an air Bourne or food allergy. (She had started weaning) I had a suspicion that she was allergic to eggs. Repeated trips to our GP in desperation proved fruitless. I even considered a private consultation at Great Ormand Street. I felt that we were being dismissed. One day she woke up absolutely covered in blood (not the first time) Not a pretty sight to see. I picked her up and drove down to the doctors and demanded to see a GP to get a referral. The receptionist was horrified. She booked Ellie an appointment that day and our GP. The GP made an urgent referral to the allergy clinic at Southampton General Hospital.
Fast forward to the allergy appointment where she faced a skin prick test that confirmed she was indeed allergic to eggs. It was an “Aha” moment for me. Remember I’m very naive here as I thought that is would be the end of the eczema. Alas no, we continued to battle with it though it seemed to be less severe.
February 2013 is another key turning point. Exactly a year after being treated for meningitis, Ellie experienced a febrile convulsion due to a soaring temperature. I took her to the doctors and she was admitted for suspected meningitis/kowasaki disease. My poor baby gal had gone through so so much in her little life it literally broke my heart into a zillion pieces. As it turned out, it was a nasty bacterial infection which was fighting through her and she was treated again via IV antibiotics. Again thankfully she was okay after a few days but I swear the antibiotics were a catalyst to her skin becoming worse.
Infection after infection. Soreness, bleeding, creams, lotions and potions. Trying new things all the time, them working for a while then things becoming worse.
Things came to a head in October 2013. I made a big step and decided for Ellie to go to nursery. Unfortunately the nursery didn’t follow the skin care and medication instructions I had given them and that, along side (in hind sight) the lighting made Ellie a very poorly girl indeed. Her skin was the worst it had ever been. Nothing would get it under control – she wasn’t sleeping,
She had little to no energy and was in constant pain. I’ve lost count of the amount of tears I’ve shed for her privately wishing I could take the pain away.
When you tell someone your child had eczema, they imagine a small patch here and there – eczema at this point covered 90% of Ellie’s body.
Out of dispair, I made a private appointment with a dermatologist as my GP wouldn’t refer us to one at that time as she was a skin specialist who we did have a good relationship with and I didn’t want to rock the boat with that relationship by insisting on an NHS referral to a dermatologist (I’ve changed since then). We met with a private consultant in February 2014. Ellie was at an all time low and I could see the shock on his face when we met with him. He later retrospectively referred us back to the NHS dermatology.
He prescribed a drug called Ciclosporin which is an immuno suppressant. The idea of this being that as Ellie’s body was effectively attacking her, this would dampen the immune response and in turn improve her eczema.
I had never heard about this drug before and came home to ask Dr Google all about it. I was terrified. It is a drug that is normally taken by people who have had transplants to prevent their bodies rejecting the transplanted organ. It’s a pretty potent drug and didn’t come without side effects. It took me and my husband a lot of moral discussions to come to the conclusion that yes their were risks to consider but the potential to improve her quality of life was huge and it would give her body a much needed break from steroids.
So, we started ciclosporin. The results were quite dramatic and we began to see improvements very quickly. It was no miracle cure though. It was a very fraught time, a lot of anxiety and isolation. She spent a lot of the time quite poorly from skin infections, other infections. One cruel side effect we had was that she contracted Mollescum contagiosum which is a fairly common child hood skin virus (warts) it will normally only manifest itself as one or two warts and then the virus will work through the system. Ellie had over 200 warts at one time as the Ciclosporin was dampening her immune system response meaning the virus could spread hay wire on her skin. Each wart was then surrounded by itchy skin so this turned out to be quite painful for Ellie. She suffered from fatigue and morning sickness during this time but it wasn’t all bad. We didn’t realise she was photosensitive at this point however in hindsight when you look back it was fairly obvious. The Summer of 2014 saw Ellie go swimming for the first time in both a pool and the sea. We had days out, she wore normal clothes during the day. Lots of happy memories were made. We also had a lot of health scares and I was constantly worried about kidney damage and blood cancers.
During this time, we were introduced to Eczema nurses. Ellie also was assigned a new consultant in dermatology and a consultant at immunology/allergy in Southampton. We learned that she had become allergic to legumes, penicillin, peanuts and dust mites.
Thanks to the Eczema Nurses and the other medical team members we started to notice a clear improvement in controlling her eczema. It was decided to start withdrawing her slowly from Ciclosporin. We did try using a topical immunosuppressant but it burned her and caused infections
We hadn’t realised what a difference the Ciclosporin had made to her completely. Upon withdrawal we started noticing she had breathing problems when she was out and about or if she went into a shop. Her skin kept flaring, facial swelling, lips swelling. We blamed everything from eggs being broken in a supermarket, peanuts on a shopping basket. Ambulances were called. It was a very frightening time and anaphylaxis was at the forefront of my mind.
We were assured at a later time that what was happening wasn’t going to require an epipen and she was to have 3 very larges doses of antihistamines a day, Montelukast for her lungs, a brown inhaler and a blue inhaler. We had an action plan to follow in emergencies.
We were using elecon, Emollin and wet wraps on her skin. We were also using skinny suits which were great.
Some days were tough for her, some days she couldn’t walk round to school and she would just lay on the sofa all day with little to no energy.
At Christmas 2014, when we were in Newcastle visiting family. I had to take Ellie to the out of hours GP at North Tyneside general hospital as she had developed a skin infection. The day before this, Ellie had been to our own GP and hospital down here for blood tests to investigate bruising on her body.
At the out of hours doctors, they questioned the bruising and acknowledged we were away from home. On this basis, they made a decision to contact social services. We weren’t allowed to leave the hospital until social services and a paediatrician had assessed her. This is despite me having all of her medical notes and a copy of the blood form from the day before. I was horrified. I would never in a million years hurt my daughter. I was on my own with her and so scared. I was told if I took her from the hospital I would be arrested. Though this seemed to be the worst thing in the world at the time, it did work out to be ok. Ellie was examined and I was questioned and it was agreed she was not at risk, however it was still necessary for a social worker from Hampshire to visit us when we returned home. I’ll mention that a bit more later.
Despite the massive amounts of meds, we were still noticing her reacting daily. We started to connect the dots and it was becoming clear that there was a correlation between her reactions, fluorescent lighting and sunlight. The way it affects her is that when she is exposed for any length of time, her skin becomes red and mottled, hot and angry. Her behaviour changes, she starts to become irritable and will try to hide herself from the source of her discomfort. Underneath her eyes darken. Depending on the length of time she is exposed depends on the severity of what happens next. Fatigue, headaches, facial swelling , body pain, skin sore and itchy. This can last for a few hours upto a few days. A referral was made to Photo dermatology at St Thomas’ Hospital in London.
Ellie started going to a child minder at this stage – she was in desperate need of mixing with other children and getting some sense of normality.
Following the visit from social services and a health visitor. It was identified that Ellie had unique additional needs. I actually cried when they visited me as it was as if someone had plucked all of my worries and concerns out of my head and addressed them. From this point onwards the support and help has been superb. Everything is being taken care of from her seeing the right people, adjustments for school, inclusion and support at her child care setting.
Ellie has now seen someone who specialises in photo dermatology. She has photo aggravated Eczema. This means that the sun (when UV levels are 2 and above) and lights worsen existing chronic Eczema and cause acute flare ups. Since finding this out, we do all we can to help her by making sure she wears factor 50 sunscreen, she avoids UV between 10am and 4pm between Spring and Summer. Small changes that have made a big difference.
We did some fundraising and this has allowed us to get tinted windows on the car and we are getting UV filters on our windows at home. She is very happy and settled with a child minder. Medically and professionally all the right things are in place to make sure she is being well looked after and preparations are to be made on the run up to her starting school.
As a family, Ellie’s condition has affected us in many ways. Her siblings are very understanding and have witnessed some scary and distressing scenes. They help Ellie as much as they can and they are so protective over her it’s just wonderful. I have felt guilty along the way in having to dedicate so much time to Ellie but they have accepted it and understand that some days we can’t go out. They know that come summer time our days out won’t start until tea time. They tell me when they spot her starting to become sore or stop her itching whilst she is on the loo. They are mini matrons. Love em. We as a family are a very strong little unit.
I wrote this to try and make sense of the last few years and I recognise now, things have the potential to change for the better with the right support behind us. I set up two pages on facebook. One to help others in the same position as us and share what we have learned along the way and one to help raise awareness for Ellie. Both pages have brought support and friendship from all over the world. It’s wonderful.
I’ve learned to question and research everything, trust my instincts, demand second opinions, push for help and support for her.
Life is very unpredictable and we are lucky to have a very understanding friend and family network who know that plans can change depending on how she is.
Ellie continues to amaze me with her strength and resilience and understanding of her condition at such a young age.
Thank you for taking the time to read xxxx