When making heart breaking decisions over whether or not surgery was the best option for Faith, we were warned of some problems that could result due to damage to the hypothalamus during surgery. Like many of you, we stressed and stressed over this but as the seizures at the time were every 30-60 minutes apart and at times more frequent than this. We went with our hearts and agreed to surgery. Thankfully, Faith fully recovered and seizure activity at the time seemed much improved with no other problems detected. Since diagnosis Faith has had routine blood tests, one being a synacthen test which checks how much of a hormone known as Cortisol is being produced by the adrenal gland. Cortisol is a steroid hormone and has many functions such as helping to regulate blood pressure, helping to regulate the immune system and helping the body to respond to stress. Faith’s levels have always been normal, though our endocrine consultant has continually stressed that due to the size of her hamartoma, he would not be surprised if this at some time became an issue. If this does become an issue, she would struggle to get over illness and her body would not cope with the stress of an illness as well. Following surgery two years ago, Faith had her routine bloods carried out, I had no feedback initially from these tests so assumed everything was ok. A few weeks later, Faith was very quiet and not herself at all, feeling very tired and run down. She had had chest congestion for a few weeks and a fever that I just couldn’t seem to get on top of. I’d had her back and forth to the doctors, but just kept being told her chest was clear and that it was viral. Her temperature would be up one day and fine the next so they did not seem concerned. Then out of the blue one evening I had a phone call from the endocrine consultant, who had only just received the results from the synacthen test and they showed that she wasn’t producing enough of the hormone and she actually should be started on hydrocortisone if she developed a fever. AAAAAAAAAAAHHHHHHHHHHHH. I felt like screaming. This was nearly two months after she had had the original test. This also explained why she couldn’t get over this recent bout of illness. You have to be constantly, vigilant to what is going on with every little aspect of our precious little’s one’s health care. And I wonder why I’m so shattered all the time, mentally and physically.
She does only have a mild Adrenal insufficiency and only needs to take the Hydrocortisone when she is ill. Last week she came home from school quite drowsy again and slept all evening. During the night she woke crying with pain in her ear and had a raging temperature so we have started the hydrocortisone again. She actually takes it really well as it’s a dissolvable tablet. As long as she has her beaker of juice alongside her to wash the taste away. She has to take it for three days or if the temperature persists. She’s had a few days off lying on the sofa, but I’ve managed to coax her back to school today so she can practice for her school concert, which is tomorrow.