As its the end of 2012 I thought about what an impact Tourettes has had on my life in both positive and negative ways. In January Pierce was in and out of hospital on a daily basis, he was having tic attacks (not that we knew this at the time) and it was so frightening for everyone as the local hospital staff did not have a clue and would just discharge us home feeling exhausted not believed and poor Pierce was battered and bruised from constant untreated tics. He was unable to attend full time school and sedated by Clonodine that left him wheel chair bound so his quality of life plummeted. What 11 year old wants his mum to wash, dress and feed him? life is complicated enough at that age without having to worry if your mum might see your private parts. Personally my mood was very low but this was buried under my overwhelming desire to fight for answers for my son. I refused to believe that there was nothing to be done apart from sedate him. This is when I discovered Tourettes Action and the forum. At last there were people who believed me and they had more helpful suggestions than the medics and support in bucket loads. I think it was in March that we attended our first support meeting in London. We met so many amazing people who I now consider family let alone friends. Jess, Ruth, Em, Bridgette, Peter, Julie,, Jake, Danny, Tee jay, Dave and of course Funky Nig to name but a few.
Shortly after this meeting Pierce ended up in hospital again with severe tic attacks and once again the medical professional told us complete and utter rubbish ‘ we believe you are an over anxious mother and your son is feeding off your anxieties, although we can not take away a diagnosis of Tourettes we recommend you get this re looked at.’ Que tears and then the lioness instinct. No one was going to stand in the way of me making my baby better. I also need to add that at this point Pierces father had decided life was to tough and deserted him even down to moving house with no forwarding address, way to go kicking someone when they are down.
So firstly I decided a bit of local support was in order, Pierce agreed and together we organised the Tic Tastic Egg and Spoon Challenge, Pierce raised over £700 for Tourettes Action and even Tourettes Hero flew in to say congratulations. Pierce became a bit of a local celebrity and suddenly people understood that little bit more. The next but no where near less important thing was I became a host for Tourettes East Anglia support group. I felt it was so important that people would not have to travel a long way to talk face to face with someone about there problems. The group was a real eye opener, so many lovely people. I am very proud of the group and how far it has come, I must say they have been a few hic ups along the way but just when I felt like giving up I remembered why I became involved and then I stop feeling sorry for myself and carry on. Trust me the politics with in a charity can be harder than any paid job you will ever have.
Right then lets talk about the professionals. I had a Psychiatrist try to take to to court for asking for a medicine regime to wean Pierce off his medication as I believed these were what were making him RAS (a deep faint). She suggested this was abuse caused by not medicating thankfully I had 15 videos to show social services of Pierce on medication having RAS attacks. Surprise Surprise when he came off the meds the RAS stopped. I continued to battle with local CAHMS for psychological support for Pierce recommended in January (we got it in November after an official complaint was made). I fought with my GP to refer Pierce to a Tourettes specialist at St Georges Hospital in London. We finaly got the life changing appointment in September. Guess what???? Pierce does have Tourettes not anxiety that he feeds off me. Not only does he has Touretes but its moderately severe (In your face incompetent local hospital staff). He was commenced on a new medication that could be increased every 2 weeks. After 6 weeks tics started to lesson and after 8 weeks you could hardly notice them. 12 weeks and Pierce can now attend full time school and had not used his wheel chair for a month. I have even gone back to work
Although I have shot down medical professionals there were some good ones. A lovely OT got us equipment that we had waited so long for. She also organised a house swap from a house in to a bungalow as Pierce was living in our lounge. We have a new yet lovely Psychiatrist at our local CAHMS and Pierce has reacted fantastically to CBT.
I feel I would honestly have had a nervous breakdown if it was not for the amazing support from my husband Jon Watts. He has been by my side every second of this long journey. We were married in August and things changed in November. Not once has he complained. He has done above and beyond what anyone should have to do and I love him so very much for it. We have been on TV in Newspapers and Magazines and every time they don’t bother to mention the support he has given Pierce and I. Jon Watts is the unsung hero in all of this and I want the world to know this.
Of course I also have amazing friends and family. I could start naming but this would never end so I hope you all know who you are. Ann White (ok I named one) has stepped in to be mum to Pierce when I go to work and I will always be grateful to her for this. She is also his respite carer enabling super husband and I to have a much needed break.
So Tourettes in 2012 has been a pain in the arse but it has also opened the door to so many amazing people whom I would never have met if it was not for the crazy world of Tourettes.
I hope that Mr Tourettes continues to lay low for 2013 but I can not wait to spend more fun times with my new found Tourettes family.
Happy New Year everyone xxx