18 months down the line of a diagnosis

OK here goes.

My name is Stacey Rudd and I am the proud parent of 2 girls- Charlie and Lily.

Charlie is nine and is beautiful but 18 months ago we were shocked by a diagnosis that changed our lives.

Our story begins when Charlie was about 3 years old and she seemed to have ear and throat infections continuously. She began throat clearing and it seemed to become a bit of a habit. She was always very fidgety and the throat clearing and fidgets would change slightly over time into something else, then they would disappear and then return again. We were never really worried about them but then the school were complaining that she was falling further behind academically. It was recommended that she should see a school doctor, who referred us to a paediatrician. We knew she would be diagnosed with ADHD, and were quite prepared for this. During the diagnosis meeting I mentioned that Charlie had these ‘twitches’ (as we used to call them), and in a very blasé way the Doctor inquired whether she had any vocal twitches, which she did sometime, ‘then she has Tourettes Syndrome’.

We left the hospital with no information about this diagnosis, just a prescription to treat the Attention Deficit Disorder, which falls under the ADHD bracket. The medication turned our lives upside down for 6 weeks. Charlie at 8 years old weighed in at 23Kg, over that 6 weeks she went down to 20Kg and we totally lost our daughter. She was continuously grey, felt sick, did not eat, and flew into rages. I asked the doctors was this right and they said children took time to adapt to the medication and it could also make her tics worse. It did and she would come home exhausted and just not like our daughter at all. We couldn’t see her like this any more and decided to stop the medication. It was true that academically she had improved slightly, but at what cost?

During this time, we were dealing with the fact that our daughter had Tourettes and until this time I did not have much knowledge of what this meant. The NHS was not that helpful and so like most of us, I went online. I found a charity called Tourettes Action and they were our saving grace. The sent me information about the condition, information for Charlie’s school and were there when I had a question or concern. They recommended that I should apply for a grant that they provided, which we were successful in receiving and this paid for a birthday trip to Centre Parcs. For someone who isn’t too knowledgeable about Tourettes then you will think, that is nice- a trip away but it was much more than that. Tourettes can be a very emotional condition for children because they don’t understand why their body is doing something that they aren’t controlling. It can exhaust them, infuriate them, embarrass them, and this had a major impact on their confidence, behaviour, school work, relationships, every aspect of their lives really. The trip to Centre Parcs was a way for Charlie to challenge herself and gain confidence. When she is physically active her tics lessen because she is concentrating so hard on the ‘task in hand’, this time is really important. It really worked and over the last year we have really worked hard to continue with what Tourettes Action started.

They also gave us a list of experts in the UK, and after a battle with the paediatrician we finally had a form signed which allowed the local Primary Care Trust to pay for treatment at Great Ormond Street. We went down to see Dr Sarah Aylett and Dr. Isobel Heymen who are experts in this field. They were a breath of fresh air and told us that Charlie’s case was mild, although when she is at her worst it is hard to believe this. That they are confident that she will grow out of this by the age of 18-20, and that at this stage medication is not needed. This was such a relief to hear. We were also told that they would organise an appointment with Dr. Tara Murphy who did an Educational assessment with Charlie so that it could be determined which ways Charlie learns best, her needs for the future etc. This has become invaluable for the school and all the suggestions are in the process of being actioned.

Charlie recently was invited back to Great Ormond Street for a group therapy session which tackled areas that most children with Tourettes have some trouble with. This was her first meeting with other children that had Tourettes. She was excited and apprehensive but overall this was a great experience for her and I as it gave us time with other people who are experiencing the same issues as us. What I got from this is that all the children are going through similar things as Charlie and that there isn’t enough being done for them. Tourettes Action came up in all of their stories, all of them, for information, advices, support and group sessions and trips. This I felt was amazing, that all families had support from the same Charity, which to me showed a lack of support from the local NHS. Great Ormond Street Hospital being the exception of course. They have given me so much support, and it’s wonderful having Dr. Tara Murphy on the other end of the phone if I need advice on trying to manage a really troubling tic, or advice on how to do basic habit reversal techniques. Also, just to have a moan with and her to tell me this won’t be forever.

Every month we get a news letter from Tourettes Action advicing us on Medical Paper, research which we can apply to be part of, funding, grants available. Also they organise events like their current drumming workshop which is free and happening up and down the country during the year. They give us information on up and coming Conferences and it is such an informative newsletter, I really look forward to receiving it.

In the future I hope Charlie will benefit from the summer camps they arrange, but at present she is too young. I feel these will be invaluable to her as they will help her share her experiences and also learn from other that are going through the same. It will also show her that there are others worse off than her, which is hard to believe when you are living with this condition.

I feel so passionately about Tourettes Action that I decided to raise money for them. My sister and I applied to do the Santa Dash in Liverpool and I began training. I lost 2 ½ Stone training for this event and we raised over £300 for the charity. The day was even more amazing due to the fact we were in Liverpool in red Santa suits and having the Liverpool/ Everton rivalry it was good to see the Blue Santa suits seriously outnumbered.

I plan on doing more fund raising for the charity and have my eye on the Warrior Dash and Tough Mudder, which if I’m honest looks like a huge challenge. But I remind myself that it is a challenge that I can choose to do or not, and it will be over in a matter of hours. My daughter had a huge challenge every day that isn’t optional and it just as exhausting. That is what makes me continue and if I can help this charity, who in turn can help others then it is so worthwhile.

2 Replies

oldestnewest
  • When I got diagnosed (as an adult) I felt really alone, but then I discovered that having Tourettes means I can be part of a brilliant community of people, both sufferers, parents and carers. Okay, so I would rather not have Tourettes, but it is great to have so many people on my side who understand what I am going through. It is important to meet/talk (online if that is the only way) with other parents/sufferers because it helps you to understand better what we are going through. I didn't realise that intrusive thoughts were such a big deal for other people with TS for example. I feel a lot less crazy when I find out that one of my odd symptoms is actually quite common! I have seen children of around 8-10 at the conferences and they usually have a kids session while all the boring adult stuff is going on! The next one is in Belfast, so a little far for me, but they hold them about two to three times a year in various places. You should go along with her to one. It will be great for both of you :)

  • I will definately try and go to one of these conferences. Can I ask why it took so long to get diagnosed with the condition?

    My friend had Tourettes when she was a child and never got diagnosed, and I am finding this a normal occurence. Do you think this a lack of knowledge on the Doctors side?

You may also like...