For as long as I can remember my son has suffered with cold sore like blisters on his eyelids. These sores on his eyelids get bigger and bigger and often become infected before disapperaing again. He typically gets these sores in March and April each year. Dylan does have sensitive skin and when he was younger he had impetigo following a hospital operation.
We have finally been refered to see a consultant following his latest hospital admission which again required IV antibiotics.
Today was Dylan’s consultant appointment with ENT about his recurrent infections that hospitalise him until the antibiotics work their magic. When we are in the ward I always feel like no one is really listening and we are passed from pillar to post. So many different suggestions are offered for the cause of the infections. Once the infection has settled we are left until it reappears. Well, Dylan is fed up with this approach and today we went armed with pictures taken over the past few years showing different stages of the infection as it develops.
The consultant was amazing, she listened to us, really really listened. She praised me for bringing the photos and said that they were invaluable. We talked about what triggers the infections, the stages it goes through. She looked back at all the cultures that had been taken she agreed that we need to get to the cause. She could see how frustrated I was. She could see that we just get passed around. She said that it is not a sinus issue and that it is not an ENT issue.
But I didn’t feel dismissed by her. She spent time with us. She remained professional but agreed that Dylan should have been seen by the eye specialist when he was last on the ward. He should not have been diagnosed over the phone by a consultant who didn’t have the time or inclination to walk around to children’s ward. The diagnosis he made over the phone is incorrect and a sinus issue is not the problem.
We are now being referred to an ophthalmology consultant to check that there is no damage in his eye, that the eye’s are healthy. We are also being referred to dermatology to see a skin consultant. That is where I have said for the past two years that we needed to be seen. Finally I am hopeful that we are getting to the right department. The fab consultant from today also ordered blood tests to check his immunity and to see why he is prone to infections. This again is something I have said for a long time. Dylan has a history of anemia and his immune system has never been great since he had surgery aged 2 when he was left with staph infections. Interestingly the antibiotic they have tried treating him with in the past is on his notes as being ineffective for him due to the MRSA type infections he has had in the past. This is why he often requires IV antibiotics. The consultant today said he absolutely needs to get to hospital when he has flare ups.
She couldn’t suggest what the trigger is and she doesn’t know whether hayfever can be the trigger or if something else happens at the same time of year. After leaving her room we headed straight to have the bloods taken. Dyl was so brave and chose to have the blood taken immediately with no creams or sprays. He was rewarded with cake and hot chocolate in Costa afterwards.
I am hopeful that we may now get some answers. The fab consultant also has told me to get back in touch with her if we don’t get answers or if I feel it is not being dealt with. Fingers crossed we are getting somewhere.
\Update the dermatologist was brilliant and diagnosed Dylan with Herpes Simplex Eye Infections and Cold Sore on Eyelids for which we now have a treatment plan for.
One Response
Oh that sounds more hopeful. I do hope you get to the bottom of things. Maxi had no specific antibodies as a baby and child, so was prone to virus’ and hospitalised a lot until he had treatment for it.