It’s been a little while since I posted an update. I felt now was as good a time as any!
Here we are in January 2017. Ellie has now been in school for around 5 months.
Prior to her starting school, it was discussed that an Educational Health Care plan (formerly a statement of educational needs) may be required. However, after a number of meetings which included a specialist disability adviser for physical needs, dermatology nurse, head teacher, school nurse, health visitor, child minder plus meetings with her consultant – it was decided we would go down the route of an Individual plan to ensure her care needs were met as with this in place – she would thrive in her environment.
I have to say, if you were to ask me what I would have wanted to happen prior to her starting school, this was exactly it.
I have to give credit to Hampshire County Council, Portsmouth and Southampton NHS teams, the children’s charity Kids and of course the very co-operative and understanding head teacher and staff at Ellie’s school.
I feel that Ellie is very lucky to be in this safe and nurturing environment with staff to adhere to her skin and health needs and look out for her.
We are an exception to the rule, I’m aware of this. If I could blue print Ellie’s plan and send it to other parents in a similar position – I would. It needs to happen. If we are sending our children with moderate to severe eczema into school, we need to know that the school is equipped to deal with it. We need to know that our children are in the best place mentally and physically to access their education. It’s a partnership between home and school and I’m so thankful we have this in place.
Ellie’s skin and health has reacted pretty much as I expected it would in school. I knew dust mites and plastic chairs would pose a problem so she sits on a cotton pillow case. She uses anti bacterial wipes to wipe the toilet seat down before she uses it (very active leg eczema and risk of infection) and has had good hand hygiene!
She knows to tell the teacher if she needs any cream or medication. Sun cream and or emollient spray is applied twice daily during the school day.
The school was granted funding from the council to place special clear filters on the window to prevent UV from passing through causing problems. You can’t even tell it’s there but it will make a world of difference to Ellie.
Her eczema remains very active. We alternate her treatment monthly, one month we use pro-topic and the next we use Elecon. Ranitidine is keeping her urticaria from taking too much hold which is great!! Her immune system has taken a battering though and she is constantly poorly with weird and wonderful things. So far this school year she has had kidney infections, tonsillitis, chest infections, 2 x perforated ear drums, sickness bug and a very nasty case of shingles. She is fatigued, worn down and easily exhausted. I’m a little concerned as her attendance is 80% at the moment. I am going to ask at our next consultation if her topical treatments are having a detrimental effect on her immune system. They are topical immuno suppressants but I do wonder if the volume we use (her whole body) has an impact on her ability to fight infection.
It’s not unusual for her to be found curled up on the sofa or for us to be up during the night battling the itchy demons, aches and pains.
She faces each day with a smile though. She truly is a little wonder and I’m so proud of how she just gets on with it. I sit here now with a patch of Eczema on my left hand, the size of a penny. It has been driving me MAD! I think we underestimate how resilient children really are.
I’ve been working hard on her self esteem and creating a positive body image. I think this is the next hurdle we are going to have to jump over. She is very conscious of her skin and looking different and and has developed an aversion to skinnies. I adore skinnies and all they have done for Ellie but she is very reluctant to wear them. We’ll keep trying though!