Just diagnosed with ADHD and tic disorder. Need urgent help from Tinsley House clients. (long, sorry)

[MyFabulousBoys]

Hello,
I have been lurking on this board for several months now after suspecting for 3 years that there is a reason that DS1, almost 8 yrs old, finds life so challenging. After a merry-go-round of dismissive teachers and judgmental attitudes, he was diagnosed this week with ADHD (inattentive and impulsive type), ODD and co-morbid tic disorder. He was managing just about ok at school, meeting targets but struggling with behaviour and impulsivity but his tics got much worse 3 weeks into the new term so we finally sought a formal diagnosis after being in CAMHS system for a year intermittently seeing a family therapist to see if we could help DS with his anxiety, moods and behaviour.

The day before the assessment we also paid a trip to see Robin at Tinsley House after reading about him on here and getting his book "Is that my child" which made a lot of sense to us. The whole L/R brain out of sync thing had been mentioned to us by a friend who is an EP as he lacks co-ordination and balance and didn't decide on being L-handed until 6.3yrs. He also seems to have sensory issues but CAMHs have dismissed those as they don't fit enough of their criteria.

Sorry for such a long post but I wanted to give the relevant information. I am just going to C&P an email I have just sent to Robin, I hope that is OK. I was hoping to get some advice and insight from parents who have been through the TH treatment as we are so very worried now.

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Dear Robin,
We saw you on November 12th with our son DS1. We brought him to you because he had ADHD type symptoms, and more problematically, many tics. You recommended a course of supplements - vegepa 70, vit B and C, and floridax saludynam. You advised us to change his diet to become more healthy and protein based and avoid bad E numbers. We also were told to stairwalk with him 3 times daily, clean teeth balancing on one leg and do target practice 3D eye tracking.

We have done this religiously. We did not manage to source the vitamin B/C (biocare) until 20th November but the other supplements and everything else was started within 24 hours. I ran out of the vit B/C this Monday, it has been discontinued but I have managed to find some which should arrive any day.

Up until about 22nd November things were really good, he was behaving well at school, was upbeat, his tics were virtually non-existent and then he slowly became much more moody and emotional. His tics have returned, are multiple and are now almost the worst they have ever been, he is constantly struggling at school with his behaviour - he is impulsive, moody and very fidgety. His focus and concentration are appalling. He is also becoming fixated on subjects and finds it hard to think about anything else. This evening he hit his brother twice (who is not quite 2 and adored by DS1, he has never hurt him before) and it culminated in a huge, aggressive tantrum about a computer game which he was being obsessive about despite only playing it for several minutes today and at his friends house yesterday afternoon. I ended up putting him to bed an hour early without cleaning his teeth or doing his last stair walking - he was too angry and unable to stop crying or function but also was very upset and needy. He seems more symptomatic than ever. Incidentally, he was formally diagnosed with ADHD and co-morbid tic disorder on Tuesday. DS1 seems worse every day.

We are really concerned and upset by this turn of events. He has not been this angry and difficult since his brother was born. Are the supplements making him like this? Is this a very unusual reaction? What should we do? Have you any idea why this is happening?

Please advise us. We are so worried to see him like this.

Thank you for reading this. Please, can anyone shed some light on this?

Really sorry to hear you're both going through a bad time at the moment.

My DCs have been doing TH for a year, and at times during the treatment they have gone backwards a bit before going forwards. Maybe become more stressed or something like that.

At one stage DS developed a facial tic. But that has now gone.

Please Update us when you get a reply from Robin.

I think He'll either modify your program (eg drop the stairs) or reassure you that this backwards step is temporary and a precursor to a big forwards leap.

Thanks for replying Indigo. It all feels overwhelming at the moment. DS1 is relentless in his need for attention and so is DS2 but you expect that with a toddler! Getting a diagnosis is upsetting but that is foolish as it isn't as though I haven't known that we had a problem. But now it seems so REAL iyswim. And I keep worrying about his future because it can no longer be put down to immaturity. (not that I did, the school did but you cling to the hope they are right).

It is so upsetting seeing your child struggle with everyday life and be so obviously stressed.

We are not clients but do vegepa, floradix and saludynam. Since being on it dd1 has taken an intellectual and communication leap, but her stimming / tics have become much more obvious and regular. She's been on them since September. Watching with interest.

Fab - dont worry about his future (worrying about the present's fine though :) )

ADHD, ODD and tics are all things that can be cured or improved vastly.

It just takes a few years. But your DS is do young, you have a few years.

The worst point for my DS was inY3. He was walking out of class 5 times a day. Hitting kids. Trying to escape school at lunchtime. Would hardly write. Hus handwriting was illegible and his spelling dreadful.I was getting calls from school every week complaining about him.

School couldn't cope with him and told me they didn't think he'd cope in MS secondary. I though I'd have to home educate for secondary. I honestly thought there was no way he'd ever survive at secondary.

Well, he's just started secondary - and he's doing brilliantly. Top of the class in allmost all academic subjects (absolute top in English). Joined heaps of clubs including rugby, school play and debating. And is the Y7 school council member. We have had no contact with school. He's not on an IEP. There haven't been any incidents this year.

It took me 4 years, and lots of therapies to get there. But I have absolutely got there now.

TH takes 12-18 months to complete. You need to see it through now and afterwards see if he needs any different therapies or not. I don't think your DS will, but of course he might. I wish I'd started with TH with my DS, I think then I wouldn't have needed to do so many things.

As TH works through different bits of the brain you will def see weird side effects. DS developed a really quite bad facial tic. This was because TH turned on a bit of his brain that he hadn't been using before and so it took a while for the brain to work out how to use it. DSs tic is now gone, as TH continues to work through the brain. But it was scary at the time.

We are now up to the pre frontal cortex, which is where stuff like social skills and empathy happen. DS came home from scouts last night sad for another scout. Ie showing 100% empathy.

This is the first time in his life he has ever shown proper empathy. First time he has ever been sad because of something bad happening to someone else!

So, all I can stay is stick with it. It obviously takes a while to change the brain. But Robin knows what he's doing. He's working through the brain in a very particular order. The cerebellum has to be improved before he can work on the next bit.

And both of you, come and join us on the TH support thread. Then you'll get more replies. (not everyone on that thread reads this board)

Have faith you have to start somewhere.
A couple of things I would like to say, which may help
Firstly, I read this fabulous book by a psychologist, called "the way of Boys", he has 1 important piece of advice/observation...some boys development is "ragged", and they often get worse before they make a "developmental leap. I highly recommend this book.

The other thing is DS when we started along the road, we started with exercises and the listening program, I was warned he would get worse, but I was not prepared for how bad it was going to be. It was also at this time of year - I honestly think we were a hairs breath from him being excluded. It was a double whammy, we started intervention, and because it was Xmas at school, there was a whole lot of extra sensory demands that sent him into complete overload. To give you an idea of the turn around, DS is now doing really well, he went to the Xmas feast at school on thursday night, it involves lots of games, hilarity, and of course a feast....and we didn't pick him up until 9.00!! To be honest I was really nervous, but a teacher yesterday told me how wonderful DS was, how he enjoyed the fun and coped so well, where other boys didn't. A year ago, he would not have (he wouldn't have been invited!).

With regards to the Sensory - can you afford to see someone privately? Even if you can't afford regular sessions, to give you a plan of things you can do at home. For example we at the beginning of treatment used to roll Ds in a blanket and firmly pat him, we set up a swing in the backyard and we bought a trampoline, now he is better modulated, he doesn't need this, but he has got good use out of all of them. The rolling in the blanket was very calming.
But also I used to "wrestle with him", had one of those hoppers - there is so much you can do at home, that may help, but you just need to be pointed in the right direction of what works for your ds - meets his needs.

I honestly believe the sensory stuff is so poorly understood by the majority of developmental professionals, but if got right (obviously in certain childrens cases) in can make the hugest difference. Not all OT's understand it well either. DS saw 3 other OT's before his current one, and the other 3 did not make one difference.