diagnosed??? what now??

[woriedmum]

My 9 year son and I had another appointment with CAMHS this time they have said that his ongoing tics and behavioural problems are assosiated with tic disorder and tourettes he also has diagnosed depressive episodes, ADHD, anxiety and tendencies towards OCD. what does all this mean for my 9 year old son and what do I do now. He is being refered to a psycologist but what about school should he be assesed by them to see if he needs extra support. Will I/should I recieve a letter with a formal diagnosis?? so many questions im just not sure what to do and who to contact hopefully somone here will be able to give me some sound advice.

[Seonaid Tourettes Action]

Hello there

sorry to hear about your difficulties at the moment - it can be a worrying time. There are lots of issues you mention and it may be worthwhile giving our helpline a call and chat with someone about the different options? We know how important it is to have someone to talk to.

TS helpline: 0300 777 8427 Mon-Fri 9-5pm

There is also a lot of information on our website which is useful - tourettes-action.org.uk/abo...

I hope this helps?

very best wishes

Seonaid

[tourettesparent]

Hi,

Oh I wish the people who diagnose Tourettes etc would answer all our questions when our children are first diagnosed and that a support structure and guidance could be offered automatically. Thank goodness Tourettes Action exists. I heartily recommend that you follow Seonaid's advice and that you contact them. They are a fantastic help.

On another level, it sadly seems very common that once diagnosed (depending on who gives the diagnosis - I'm sure that somewhere, someone must be doing it properly) It was 6 months after first diagnosis that we had any real answers, support and reassurance, and only when we were referred to a specialist in Tourettes. We felt as though we were swimming in a sea of uncertainty - we had no contact with anyone for up to four months after first seeing a paediatrician and asked a second paediatrician to be referred to a specialist out of our area because our local health authority offered no help. And all during this time, our child's condition and severity of tics got steadily worse and he was sinking at school. (It has to be said though, that his school were fantastic)

Once we saw the specialist, we were offered plenty of information and advice, plus habit reversal therapy to help our child deal with his tics. They are there at the end of a phone if we need an appointment and initially they chatted to us over the phone to talk about our child's condition. We feel that we can email if we are desperate for help. We are able to contact them for supporting letters if we need information for school or any agencies that help with our child's Tourettes. Having that backbone is essential when you feel as though you are desperate to help your child, but feel helpless. There are plenty of things that you can do to make a positive impact though.

Contact your child's school and ask to have a meeting with his teacher, head teacher and SENCO (special educational needs co-ordinator). Talk to them about your concerns and if there are any issues at school. Your son definitely needs to be referred to an Educational Psychologist, as this person's opinion is extremely important when helping your child at school. Your child's school should help you through this process. As he has ADHD etc, you might find yourself moving towards a Statement of Educational Needs if his TS etc has a large impact on his school life. On a personal basis, we thought this would be the last thing that we would have to seek for our child, but his TS and later diagnosed Asperger's Syndrome had such a massive impact on his school life, that we had to go down those channels. It was the best thing we ever did. His statement of educational needs helped him gain a place at a specialist school where he is very happy. We were facing the nightmare of having to send him to a mainstream secondary school when he was 11 last year. (Tourettes landed when he was 10.) Parents at times can face resistance but if you get the support of your child's school on board, it can help a great deal. Best piece of advice? Learn to be push and to push again. Don't take no for an answer and get what you need for your kid without being obnoxious.

Carry a file around to every meeting with extra photocopies of every letter, diagnosis, concern etc on hand so that you can hand them out to any different professional you meet. It's a pain in the neck fact that all the different sections of specialists or agencies don't always contact each other so there are gaps in the info they have on your child. You can avoid weeks of toing and froing if they have the info right there and then to back up any point you are trying to make. Take that file into the school meetings to demonstrate that you have professional proof that your son suffers from these different conditions. More ammo, more power to help your kid.

If there is a support group in your area PLEASE consider going along. It's a place to sit and chat to people who have gone throught the same thing or are going through it exactly at the same time as you. It's also a place to cry if you want to without anyone thinking all your taps are cracked! I am not a 'group' type of person. I am now. You can get to know all sorts of useful stuff you might not have found out about if you were out there on your own. Our group is still in its early stages, but at least 2 members have got their child referred to the wonderful specialist we have because they found out about him through the group. Think about it.

See your psychologist and ask if he is a Touretts specialist. If not, get your paediatrician, GP or CAMHS to do so. CAMHS can be helpful they told us if our child ever got severe anxiety or depression because of his Tourettes, but they couldn't help us with his actual Tourettes. As my son wasn't suffering from those other conditions they signed him off. I was thankful that they were honest with us. It's strange that our local CAMHS has nothing to do with Tourettes, yet yours does. It is different all over the country. Different parents get completely different experiences. (Yet my son's wonderful habit reversal therapist is a CAMHS trained nurse??????????????!!!!!)

I hope you can find something useful in any of my ramblings. Eighteen months ago I was at the beginning of all this process and it can be an up-hill struggle. However, at some point, you will come out at the end of it into a manageable maintenance level. There are people out there who can help. Unfortunately parents often have to fight to get the care their kid needs but don't pull your hair out over it. Just quietly keep going until you get what you want.

Oh last thing. Your instincts about getting help at school now are correct. Year 6 and the prospect of finding a secondary school will loom all too soon enough. Get things sorted whilst your child is younger if you can. Getting an appointment to see an educational psychologist can take months so act as quickly as you can. Because Tourettes and a proper diagnosis didn't happen until Y6 in my son's case, we faced a really tight deadline to get everything through on time with a lot of knucklebiting inbetween. It will be a lot easier in the longrun if everything is sorted earlier. You could also go and check out the local secondary and specialist schools in your area. Knowledge is a boon.

I wish you the best of luck in everything.

Yours, K.