A Quick Recap
The last post I wrote regarding day-to-day living with Mollie was regarding her complete fear of the outside world, to such an extent, that I felt that she was agoraphobic. To be honest the realisation that I was now going to have to try to help her overcome yet another condition on top of the already complex and challenging condition of PDA completely knocked the wind out of my sails.
For various reasons I have had a bit of a sabbatical from blogging and from facebook in order to completely concentrate all of my time and efforts on Mollie and to try to sort my own head out.
Since the end of formal education we have made huge leaps forward and we have been on an incredible journey of self-awareness and discovery. All of which is documented in the ‘day to day living’ category of this blog. Our home is completely PDA friendly on all levels, the final round hole that we had being trying to fit our square peg daughter into i.e. formal education was removed in Easter of this year.
Life was far, far easier than it had ever been but it still wasn’t plain sailing, not by any stretch of the imagination.
- She was completely isolated from the world to a point of being, at one stage, completely agoraphobic.
- She was also isolated from her family despite my repeated attempts to reach her. I would have brief periods of success and pleasant times would be shared only for her to repeatedly disappear back into her own and very solitary world.
- Most days consisted in Mollie completely absorbed in a world of fantasy watching back to back episode of the same show on her Ipad. She has commented that she disappears into this world and becomes part of the show only to feel huge sorrow when a series finishes and real life beckons.
- I still walk on egg shells waiting for the most innocuous of comments to be misinterpreted and for her to turn on a sixpence.
- Her ability to cope with any demand on any level was nil but her control over others had subsided.
My final hope was now being pinned on the prospect that medication may be the cherry on the cake, the final piece of the jigsaw that would compliment and complete the huge amount of work that we had done during the past three years. We had achieved a lot re her behaviour, self-awareness and self-esteem but I was now facing a brick wall with the final stages.
Some two years since I first requested medication for Mollie and following several fraught conversations with my local health service they finally agreed to actually do something to help. They began preliminary assessment for ADHD and more importantly they actually did what they had promised and forgot to do two years previously, which was to refer her to Birmingham’s Children Hospital re medication. Their behaviour and neglect towards my daughter, has been in my opinion, nothing short of appalling. A less frazzled and less wise me would have considered an official complaint. However having already experienced the complete closing down of ranks when you dare to question the establishment and the manner in which you and your child can be chewed up and spat out I think that pursuing a formal complaint would be a complete waste of time and energy.
- In an effort to help Mollie leave the house we decided to stop all attempts to persuade and cajole her into it incase this was actually making it more pressurised for her.
- I discussed the situation with Mollie and we decided to that our first attempt to break through the invisible bars at the front door would be a trip to the cinema.
- She requested that I leave it to her to suggest the trip out and that I would not keep making daily attempts to encourage her.
- We decided that we would have an agreement that if at any time Mollie was finding things too difficult that we would immediately return home.
- We eventually managed two cinema trips and two supermarket trips, one for her birthday cake and one for Halloween merchandise.
- It was a start upon which I hoped that I could build on. Thankfully we have had a helping hand in this area which will become clear later on in this post.
- Both myself and one of Mollie’s previous schools completed the Connor’s Questionnaire which is designed to highlight ADHD behaviours.
- The results from this concluded that Mollie’s difficulties in attention, hyperactivity and impulsivity were consistent with what you would expect to see in a child with ADHD.
- However due to the overlap in diagnostic criteria between ADHD and PDA it was recommended, by the psychiatrist, that the difficulties presented by Mollie could be explained by her current PDA diagnosis.
- I was fine with this because the point of either ruling in or ruling out ADHD was purely from a medication guidance point of view.
- I was pleased however that the Connor’s questionnaire had highlighted that she does have the difficulties associated with ADHD. I think that it is important that anyone dealing with Mollie in the future is aware that there are difficulties in these areas as well as in the areas of ASD – PDA.
- We finally received our appointment for Mollie to be assessed for medication at Birmingham Children’s Hospital by their CAMHS at tertiary level on 28/10/13.
- It was with great relief that I found myself in the presence of two very experienced professionals who were fully on board with the PDA subgroup and its rightful place as an ASD.
- Mollie had her height, weight, blood pressure and pulse taken as well as receiving an ECG and having her bloods taken.
- She was prescribed a very small dose of 0.5mg of Risperidone to be taken at night. With a view to increase it to twice a day depending on how she reacted to the initial dose.
- We were informed that they have had very successful outcomes in other patients with PDA as a result of this course of medication.
- Mollie will be closely monitored to ensure that there were no worrying side effects.
- We were warned that Mollie’s appetite may increase and that weight gain is a very common side effect of this drug.
- Mollie already has a non stop, unrelenting appetite and is becoming increasingly overweight. Desperate to start the medication but to not lower her self-esteem with more weight gain Mollie and I put a plan together to try to reduce the possibility of weight gain down to a minimum.
- With a fridge stocked with fruit and a cupboard devoid of chocolate or crisps we tentatively began the medication.
Results of Medication
- Whoop, Whoop and Whoop!!!!
- The result was incredible and instant. I presumed that this was some sort of placebo effect, I was thrilled when the Doctor made a follow-up call to check how things were going and informed me that this was not a placebo effect but that this drug works instantly. However it may be several weeks before the full improvement is felt.
- I cannot quite describe the difference in her, she is so much calmer and a joy to be with.
- With the anxiety and accompanying impulsivity, constant fidgeting, panic and instant screaming / shouting quelled by the medication Mollie can finally be herself.
- She is bright, funny, more ready to share a joke and in her own words she has never being happier.
- Rather than becoming a zombie, which is how many people may perceive a medicated child, she is actually more animated than ever and actively seeking out interaction and spending less time on the Ipad steeped in repetitive routines.
- Prior to medication we had made some headway on the agoraphobia managing a couple of trips to the cinema and two trips to the shops. She is now far more comfortable going out and we have added a trip to our local shopping centre, a walk with our dog and a visit to a local pottery museum where she can throw a pot and paint pottery figures.
- She is still demand avoidance and we still use PDA strategies but she is able to follow far more instructions, without inducing panic, than she was previously.
- Her appetite has actually gone down rather than increased. This may possibly be due to the fact that it couldn’t have got much worse than it already was. Heightened anxiety and boredom had caused Mollie to reach for the fridge at every opportunity and so although medication may have increased her appetite has the calm that it has caused within herself simultaneously reduced it at the same time.
- At her request I have decided to try to enrol Mollie in a small performing arts group. She says that she feels ready to try to join a club and to attempt interacting with her peers.
So things are going swimmingly for us at the moment and I can only hope that it continues to do so. It is however important to point out that all children react differently to medication and that not everyone may have such a positive story to share and that it is still very early days for us. I can’t help but wonder if the medication would have made such a dramatic difference to Mollie if she was still trying to cope with damaging social exposure in the form of school and still trying, unsuccessfully, to play with peers. Would a brain still battling the daily onslaught of trying to cope in a world that induces constant panic have been too much for the medication to try to combat.
Mollie has had a period of complete social detox and demand detox for a period of 6 months prior to starting medication. Her mind has been in as calm an environment as it could possibly be and we had attained the maximum that we could achieve by altering her environment alone. For us medication has been the final piece of the jigsaw, the cherry on the cake and its ultimate aim, for us, was simply to help Mollie feel more calm, less panicked and be able to cope with a little bit more of the outside world. For now our aims and dreams have being achieved and it is a pleasure to have her at home and to spend time with her.
Mollie was funny, bright, quirky and had the ability to make everyone who met her fall in love with her unique little personality. I really thought that I had lost this child for ever, I had lost all hope of ever having a proper mother / daughter relationship with her ever again. I had seen PDA claim every inch of her soul until there was very little resembling my daughter left. This medication has given me back the child that I last saw over six years ago. We made huge progress without medication but it was still a daily battle to give her what she needed and to keep looking on the bright side. I almost had to give myself daily CBT to convince myself that I was happy, that I could cope, that there is always someone worse off so I need to buck my ideas up and so on.
Mollie will always have PDA, it is what makes her who she is and I can finally say that this is now a very positive thing. The side of PDA that I didn’t like was the side that destroyed her, the side that ripped her apart until she couldn’t even leave the home, the side that destroyed my own mental health and my relationship with her and the side that cut her off and isolated her from her own family. Now that the medication has pushed this side down the other side of PDA is wonderful. It makes her unique, individual, quirky, funny, a fabulous prankster and a wonderful little actress.
I feel like we have all being born again and given a fresh crack at life. Fingers crossed that this really is the beginning of a brighter future for us.