January 24, 2017, 08:38 PM
Hi my 9 year old son has been suffering with tics from the age of 6. I went to the school and spoke with the senco who said he would monitor my son in class. He got back to me and said there was nothing to worry about he was just a bit strange! !! Anyhow he started having counselling and the counsellor noticed the same behaviours I had and has referred him to cahms. He had his appointment yesterday and thankfully they believed me from the diary I kept and the referal from the counsellor. He has been referred to the extended team for help with coping strategies and habit changing. No mention of a diagnosis yet I presume they will work with him first. His tics are vocal and motor and have seemed to have got worse. He does have sweary ones. After all this my partner says he is putting it on for attention. When I speak to my son he says he can't help it and that his throat and tummy hurts if he trys to hold it in. My family are in denial and just say he is naughty. I'm sure he wouldn't be able to put it on and I very much believe him however my partner etc make me question the whole situation. I want to help my son and make sure he gets the right support I just find other people's negative opinions so frustrating. My son suffers alot with acid reflux and anxiety too. So glad to have found this forum. Ty xxx
January 24, 2017, 09:22 PM
Welcome to the Forum and thank you for joining us. Thank you for your support and dedication to get the facts on behalf of your son.
That's unfortunate and is probably due to misunderstanding that tic symptoms are caused by a neurological disorder and that symptoms are involuntary. Tic symptoms are not behavioural and are not attention seeking behaviour, by any means.
The symptom of coprolalia is not a prerequisite for a Tourette diagnosis. It is thought to affect about 10% of individuals diagnosed with Tourette.
You may want to show your partner the Tourettes Action page on What is Tourette Syndrome and download the factsheet What Makes Us Tic?.
To assist with your and your partner's understanding of tic disorders, while Tourette tics are neurological and involuntary, the tics are influenced by environmental factors, both internal and external.
Examples of internal factors would include anxiety, fatigue, stress, excitement. External factors would include people, places or situations that tend to exacerbate tics in a predictable way. The environment does not cause tics, as Tourette tics are involuntary, but the environment can influence tics, both positively and negatively.
There is no universal standard for what factors trigger tics for any given individual, so a therapist would interview and assess each individual's particular tic triggers in order to provide strategies to address those triggers. What might increase tics for one person with Tourette, may not affect another's tics, while the same factor may lessen yet another's tics.
Strategies to manage internal factors would include such things as learning relaxation techniques, improvement of sleep hygiene, dietary modifications such as reduction in caffeine and sugars. External factors can be managed by mitigating those situations either by avoiding them, finding ways to lessen their influence through education, awareness etc, or learning ways to lessen their impact.
These strategies can be learned with the assistance and counseling of a behavior therapist, especially one who is trained and experienced in treating Tourette Syndrome.
A formal diagnosis may take a while, because initially the doctor may make a provisional diagnosis, subject to follow up assessment up to a year or more, later.
Your diary of your son's tics along with some discreetly made videos of his symptoms will most certainly help the doctor in making a more informed assessment.
Is your partner your son's biological, adopted father or legal guardian?
You are your son's best and most important advocate and your allegiance and responsibility is to your son in getting a competent medical evaluation and diagnosis in order to get the right treatment options. Don't allow the lack of understanding or indifference of unwitting family mebers distract you from providing your son with the medical care he deserves.
Have you been in contact with the Tourettes Action Helpdesk to find out about local support and resources in your area?
Is your son receiving any form of treatment or therapy to help with his anxiety, and medications for his acid reflux?
January 25, 2017, 02:47 AM
Steve. Ty for your swift response. I will read over all your information and advice and get back to you ASAP. Thanks again for your support xx
January 25, 2017, 01:26 PM
Ladymxxx, I'm so glad to hear your son has someone in his life who understands what is going on with him (you!).
Do you think your partner and the rest of your family would have an easier time taking a more understanding approach if you had an official diagnosis? I live in the U.S. and my son's pediatrician (primary care provider) made the initial diagnosis, based on the information I gave her. I'm sorry that I don't know much about the medical system in the UK.
If your partner follows soccer (=football?), he might like to take a look at some Tim Howard videos. Here's one possible place to start: Be One of the GreaTS | The GreaTS
You mentioned a referral to the extended team for help with coping strategies and habit changing, and I wanted to mention that your son might be a bit young for habit changing. I mean, it might go great, but if you get the impression it's frustrating for him, you might need to point out to the team that it is a bit unusual to use this approach at age nine. (Steve, please correct me if I'm wrong.)
I want to share a fun powerpoint about Tourette that your son might enjoy watching with you. I'm having trouble attaching powerpoint files to the forum today, so here are some links on Google Drive, for now:
original powerpoint, with sound effects
our version (with some improvements, we think, but with no sound effects so my son's fifth grade teacher wouldn't find it too silly)
January 25, 2017, 03:43 PM
Ty for your kindness and understanding. I will take a look at tge power points with my son. I think my family and partner are in complete denial and don't want to accept the fact that leo has a neurodevelopmental problem. Tge medical system here is not great due to funding with the NHS. I'm so grateful that cahms listened too and believed my son and I. I don't think they would refer him to the extended team if he was just being "naughty " as my partner says as they don't have tge funds for that. The waiting list for the extended team is 12 weeks and they said that he might be too young to be diagnosed which I found odd. However I'm sure once they start working with him they may go down the diagnosis route. Here in the uk all doctors and nurses and I know as I used to be a nurse have to follow guidelines from NICE to obtain a diagnosis. Thank you again for responding xxx
---------- Post Merged at 02:43 PM ---------- Previous Post was at 02:28 PM ----------
Our version power point was brilliant leo and I just watched it together. He was able to identify really well with it. Ty xxx
January 25, 2017, 03:45 PM
The Tourettes Action Helpdesk can point you to qualified Tourette specialists in your area to ensure Leo is competently assessed. TA also has local support groups, where you, Leo and perhaps even your partner can meet other people and kids living with Tourette.
Meeting others is the best way to learn more about the disorder, which, when not fully understood, leads to confusion and even denial, which your family seems to be experiencing.
I would also point you to a very informative and helpful book for situations like yours to improve awareness about Tourette and can help clear up misunderstandings.
It is called A Family's Guide To Tourette Syndrome . The link I provided is to Amazon U.K. and I would recommend the Kindle version, which is less expensive.
It's published by the Tourette Association of America, and in my opinion is the best book to help family's understand and come to terms with a Tourette diagnosis.
You can have a look at one chapter from my own copy titled Parenting a Child With Tourette Syndrome HERE to see if you like it's content.
Aslo there is more information on the book HERE on the Forum along with other books.
Last edited by Steve; January 26, 2017 at 03:35 PM.
Reason: Correct Link
January 25, 2017, 03:53 PM
Hi steve. The pediatrician said that he thinks his acid reflux is habitual but has prescribed omeprazole. I think cahms are going to address the anxiety. Thank you for your very wise words my partner is not my son's biological father. His real dad is not allowed any contact with my son due to violence etc. I had a stern word with myself today and your right I'm not going to let anyone make leo and I doubt what is very real because of there lack of understanding. Diagnosis will have to be obtained following the NICE guidelines and yes I believe that could take some time. I will contact tourettes action to see if there are local support groups. Along with the sweary ones he does have other moter and vocal tics. They can vary. Certain situations seem to increase them however when he is swimming he doesn't get them. I think we will definitely try some relaxing xxx
February 16, 2017, 02:31 AM
How are you and Leo doing, Ladymxxx? The forum was down for a week but it's back now. Let us know how it's going!
I experienced a difficult period once, when I was kind of nervous and anxious a lot of the time, especially at mealtime, and I swallowed a lot of air while eating. That brought digestive discomfort. I wonder if Leo is getting some chicken-and-egg related issues, with the reflux and the tics and the anxiety?
February 20, 2017, 05:49 AM
Hiya. Sorry for the delay in reply. Leo and I are doing well. Thank you for asking. Yes I do think the acid reflux is an anxiety issue. He seems to "be able to make it happen" when he is in a uncomfortable situation as well as suffering after meal times. He has been expressing his concerns and asking questions about his tics or odd feelings which is a step in the right direction. He is suffering from managing his anger and has taken to scratching his face in anger,so we have been using different techniques to cope with anger. Leo mentioned that he thinks he has ocd I asked him why and he gave me an example of dots having to be in a correct line and equal. There is so much for his little mind to cope with ATM whilst also remembering to be a little boy. My partner is coming round and my mum has completely accepted things now. Family members are still asking doubtful questions however ii am and will continue to be leos advocate. Thanks again everyone xxx
February 20, 2017, 10:39 PM
Sorry to hear about the anger and the face scratching. I find it scary when my son's symptoms result in almost-inadvertent self harm. That is so interesting that Leo himself had the self-awareness to talk to you about OCD. Had he heard about it somewhere? What's ATM? It's great to hear about your partner's and your mum's developing support.