It’s been a while since we’ve added any blogs to the website, mainly because of the hustle and bustle of life but particularly due to changes and challenges with the health of Annabelle and Robbie. I’ve decided to provide this update because we have experienced a significant deterioration of Annabelle’s condition and want to share this to advise and help others.

Sleepy modes, anxiety and depression

Since the end of the summer holidays Annabelle has experienced a few of her sleepy periods. These are times when she seems to want to do nothing but sleep – which we often compare this to a car going into “limp home” mode – where she will be very quiet, often non-responsive, and needs encouragement to eat, drink and do the basics. These have lasted between a few days and several weeks. This resulted in missing some school in the first half of the Autumn term. When she was at school she was increasingly experiencing frustration and anxiety.

Annabelle is in the last year of secondary school (year 11), a time when students are making final preparations for exams and planning their post 16 journey – sixth form, college, apprenticeships. A year ago we knew that Annabelle would likely struggle to sit her GCSE exams and that we would be looking at specialist education setting for post 16. We started the processes to seek adjustments for her exams. We visited a specialist school in January which Annabelle very much liked and she decided is where she wants to go from year 12 and ideally start 1 day a week in year 11 to access some of the support and subjects that her current school cannot offer. The process was started with the Specialist Educational Needs team at the council, which is always subject to budgets, panel approvals, etc. When school restarted in September, Annabelle had received no answers about where she was going to be post 16 and was experiencing the almost constant discussions at school about exam preparations, mock exams, tests and assessments – she didn’t know whether she could sit exams or be assessed through other methods and did not know if she could go to the specialist school that she had chosen – this all created a tremendous amount of anxiety.

Anxiety, along with tiredness, triggers a deterioration in Annabelle’s health and well-being. She experiences rapid mood changes and depression. We are fortunately to have support from Dorset’s ID CAMHS unit which has helped with coping methods and ways to communicate feelings. Earlier this year they prescribed medication (Diazepam) for Annabelle, to be used in situations where she was experiencing a high level of anxiety where coping techniques and anything we say or do simply doesn’t help. This medicine rapidly calms and suppresses the anxiety, often making Annabelle fall asleep.

Delirious and psychotic

In October we had an enjoyable break in our motorhome on the Devon coast over the half term holiday week. Annabelle was a bit sleepy but otherwise enjoyed time on the campsite, a few visits to places nearby and swimming with Robbie and Georgie. After the half term she went back to school but was sent home as she was falling asleep in class. She remained at home for the next few weeks suffering her sleepy episodes. She was much better in the third week of November and managed three straight days at school without problem, just before our first overnight visit to Naomi’s House and Jack’s Place.

Due to COVID restrictions we have had a patient wait since initially contacting Naomi’s House in 2019 to be able to make our first visit. The first visit always consists of a family stay over in order that care plans can be established and parents are to hand in case a child does not settle. Both Robbie and Annabelle had their own rooms, with staff on hand and monitoring to ensure their well-being at all times. There were plenty of activities and play facilities. Georgie and us parents stayed in separate accommodation and enjoyed the respite. Annabelle enjoyed chatting with the staff about everything she loves and she enjoyed making Christmas decorations and other crafts. She shared that she enjoyed being at Naomi’s House and Jack’s Place because she knew that she would be supported if something happened to her while she is staying there. We headed home on the Sunday morning and Annabelle was very upbeat, was very chatty and talked a lot about the meal she was going to make at school the next day.

Annabelle’s chattiness turned into constant talking, sometimes with us and often with imaginary friends. This went on for 48 hours before she finally crashed and fell asleep. When she awoke, she was again in a different world to the rest of us. Talking to other people. Sometimes she was very happy speaking to members of her favourite pop group (The Vamps), singing and dancing but sometimes she was very scared. The ID CAMHS doctor made a home visit on the Thursday and witnessed this. He was as concerned about this as we were and immediately organised blood tests to rule out infections and prescribed Lorazapam to Annabelle to help her settle.

The following week things worsened and Annabelle became much moodier, scared and violent. The medical support has now prescribed anti-psychotic medication (Olanzapine) to help control the mood changes and sedate her.

Many times in the last weeks I’ve thought (hoped) that this is just a mode that Annabelle will snap out of at any moment, similar to her sleepy periods that have lasted a few days or weeks and then back to normal. I’ve looked for reasons, for what has triggered this, for things to blame ….. the lack of progress and answers about schooling & exams and the unnecessary stress that has caused ….. how safe Annabelle felt at Naomi’s house and has this allowed her to stop fighting knowing she will be looked after

It’s now clear that this is the next phase of Annabelle’s fight with Battens. The new normal that we will need to manage.

I can try to imagine, but only Annabelle knows what it feels like to be experiencing what is happening in her head and the effects of the cocktail of medicines she now takes.

What’s next

The approval for the specialist school has just come through and Annabelle can start 1 day a week from mid January. I suspect the transition from mainstream to the specialist setting will now need to speed up.

Our priority is to help Annabelle to be as happy as possible and give her the best possible care.

Lisa