NEW Tinsley house support thread -part 2!!

[Badvoc]

Hello everyone!
Thought I should start a new thread as we were nearing 1000 posts! :)
Indigo is no longer posting as you all know, but I think it would be such a shame for the support thread to go too.
I know I find reading about all the ups and downs we all experience very helpful and it's so great to hear all the progress :)
So.
We go back to TH next month and can't wait. So interested to see of the tracking programme has worked. I think ds1s reading speed has improved and he is now reading proper chapter books!
He continues to show less anxiety, OCD behaviour and stress.
He is eating better and is generally a much happier chap.
Looking forward to hearing from you all over the next few weeks/months...X

Thank you all.

We are using Eskimo kids fish oil. I think it is all making a difference and when I look back 6 months she has made massive improvements.

She is just regressing in some areas at the moment (soiling herself, being quite screechy and not sleeping well) and these I find quite stressful. However her language is getting better everyday.

I will spend some time tonight making a list of things I want discussed tomorrow. I will take DD to CDT tomorrow am and I will phone TH in the afternoon.

I will come back and update if that's OK. I could use some support at the moment.

It's fine to stick with 4 if you want to.

You can't get too much omega.

Prince please update us.

It's much easier if we all do this together, then any of us to do it by ourselves.

Cats - we're finding the stair much easier after 3 weeks. Its difficult getting DS to concentrate and not to fail around or throw himself up or down the stairs. To help him grasp what the exercise we have a little chant of 'One, two, three, together. One, two, three together' We've been standing behind him firstly with our arms on his, but not just hovering at the bottom. We're a long way off from the ideal though!

Welcome Prince, we have all been there. Things had been becoming difficult for us for a while, or just 'DS being full-on' and 'different' or 'a bit behind'. I thought we had a bad behaviour / acting out problem for ages before he started at pre-school in September and it all unravelled very quickly as he finds the group situations difficult. I have shed so many tears since the beginning of October and felt so anxious about the whole thing. It is a totally normal and natural reaction - your DD is your most precious thing and you want to do everything you can to help and support her. I know exactly what you mean about feeling sad and lost - it is incredibly isolating. Esp difficult with meeting tom and DH away. I have blubbed in every meeting with school and writing it all down helps you focus and gather your thoughts. The others on here are far more knowledgeable than me and will give you great advice, but just remember that you aren't on your own and that this is a fab, friendly place. I wanted to do everthing at once and got into a pickle with researching different ideas / therapies etc. We were due to go and see Hemispheres before I found this thread and now I'm so pleased that I called Robin. We were able to see him 10 days later (as we took DS out of pre-school for a day) and get into action.

Already there have been some fantastic changes for us and this gives me incredible hope for the future. Hang in there.

Thanks Indigo, will stick with four for now

Indigo - thanks for the probiotics link. Which ones do you take?

We were using the one with the orange flower on the front.

But currently aren't using any. Just too much else happening. But do think kids and me should be on them.

BeautifulPossom seems to have found something good though....

Thanks Indigo. Have you read the book? I am now wondering if I need to read this book too My bedside table is groaning...
Beautiful possum - can I have the details of the probiotics you are using? Thanks

Yes I've read the book. Before I knew about TH. it was what originally convinced me to try GF/ DF.

I would say do read it. But no hurry. It's all interesting, but you can't do everything.

The book I need to read now is the body ecology diet.

Update from me:
First the CDT. Was OK actually. Lots of talking about DD and essentially comm. pead. is going to say she has a speech and language disorder, moderate learning difficulties and hypermobiltiy which is causing her gross and fine motor skills issues.
The statement process starts now and hopefully she will have one in place by the time she starts school.

I also called Robin! It was knowing I was coming back here to update which spurred me to do it. He was lovely and said she sounds like she has problems somewhere I can't remember but at the back of the brain. We are booked to go in the new year.

I have decided it will be a positive thing (there are so many bloody appointments with DD) so we will book a hotel and make a weekend of it and me and DD will just sneak off at some point to see Robin.

Phew! Feel absolutely emotionally exhausted from it all today. Looking forward to bed tonight already :)

Prince...that's what we did last year...booked a hotel and went for the weekend.
It was lovely. I had never been to the new forest before.
Good luck x

I think we could all do with a break away. 2012 has been pretty full on. 2013 is when things will start to get better.

I will be back with more questions no doubt and will update.

Prince- go to peppa pig world with dd. we went last time we visited Robin and had such a lovely day. All the Christmas stuff will probably still be up when you go. We stay in the premier inn and it's nice.

I will also have 6 yr old DS with me. He may not appreciate peppa pig world! I will take a look at premiere inn thanks.

Well done for taking the plunge, Prince!

The New Forest is fab (but I am biased!). If you don't think your 6 yr old will fancy Paulton's Park, I can definitely recommend the Otter and Owl Centre at Longdown. My two (11yrs and 7yrs) still love it! It's only a few hours tops to go round and they have a little cafe if refreshments are required. Actually it has changed its name

Or there is Beaulieu Motor Museum.

Hopefully, you will find the session with Robin stress free! The only thing that was hard was trying to remember my ds' developmental milestones! It is great to feel as though you can do something positive.

Look forward to hearing all about it.

Prince - you've done the hardest part now. :)

I'm sure you'll have a great weekend in the new forest.

My 6 yr old ds thought peppa pig world was amazing! It's just rides and stuff, not girly at all. Your ticket price gives you entry to paultons park if your ds likes bigger rides. Mine is scared of that kind of stuff so the rides at peppa world were perfect.

On a different note......

Weve had lots of discussions about which is the best Omega and whether you need DHA or not. Well I just got DDs blood tests back and both her EPA and DHA levels are fine. (after a year on Vegepa) so Vegepa seems to be working fine for her.....

Hi all, I keep reading this thread and not doing anything about it.... I am planning to visit Robin but a bit daunted about how on earth I would get ds (aged 5) to willingly cooperate with the activities. How do you all manage? I just don't want to spend hundreds and then not be able to make the most of it because I can't persuade him to do the exercises. I realise that sounds like a pathetic excuse.

Anyway, we are doing the Vegepa and the diet, and have been gf/cf for a couple of years (initially we cut out gluten due to his digestive issues and found it also made a big difference to his behaviour). What prompted me to post was seeing Ruggles' question about gf bread - I just discovered this place which does loads of different gluten free breads (including egg and nut free) and delivers nationwide. I'm trying out one of their taster packs later this week so will feed back if you like.

Have you read "the brain food plan". Some of the I tibial exercises are set out in there. You could read the book and try those exercises and see how you get on before going to TH (that's my current plan)

Prince- The best advice I can give you is to go to Robin. He will identify where your DD's problems are and tell you how he can help her. He will help her and will help you too. I know it takes a huge leap of faith to do this and it is upsetting and frightening. I remember thinking that maybe my child would be the one he couldn't help, but he can help ALL children with dd. He helps children with ASD. He is truly amazing, and the whole experience of going to Robin is a relief. It is not like any of the other appointments you will have been to. If you can afford it...please do it.

Cats- Before going to TH I took DS to a BO. The appointment was long and every part of the examination was done manually. Robin is able to test eyes using an amazingly accurate machine. The BO said my son only had a tracking problem and that his convergence was fine. His convergence IS NOT fine. He failed all the tests for convergence and was not able to do the Vision Therapy exercise for convergence. If needed, Robin would prescribe VT. The VT he prescribes are fun games and can be done easily on a PC at home. They are also way way cheaper than you would pay a BO. A trip to Robin and the VT will cost less than an appointment with a BO and you will get a neurological assessment and treatment plan to overcome dd from Robin. The BO will do none of that.

Ruggles- The gut protocol that my DS is doing and will do for 6-8 weeks is designed to heal leaky gut. it consists of 3 probiotic products.

1].saccharomyces boulardii (made by Allergy Reaserch Group) He started this first. 1 capsule half an hour before breakfast and 1 capsule half an hour before dinner. Take with water.

After 3 or 4 days on the SB start the second product.
2] Lactozyme ( made by Biotics Research) 1 with breakfast and 1 with dinner.

After a week on the Lactozyme add

3] Allergy Research Groups NT Factor ATP Lipids Powder. Start with one scoop dissolved in water ( then add juice on top ) and after a week go up to 2 scoops. ( scoop included)

The powder has only just been released in the UK. My nutritionist is very excited about it. The American results have been amazing and I must say that my DS is thriving on it.

We are just about finished and will be starting a new protocol shortly to maintain the healed gut. WE will be dropping the SB and Lactozyme but adding other products in but the 2nd protocol continues the Lipid Powder.

Will post details of where to order from tomorrow ( off to bed now- Knackered!)

Not sure who asked but my DC take 2 Veg- EPA 70 capsules a day ( so 560mg EPA) My kids are 6 and 8.

At our appointment with Robin on saturday he told me that I could switch from the two floridix products to 3 boots products. Kids are delighted as sick of floridix now.

I have dumped the IKEA tray my kids were using to do the stair exercice....it was a nice tray but after 780 stair repetitions I had grown to despise the thing!

Beautifulpossum - thank you, really appreciate all the info. I am going to do this with the whole household!

Prince - glad that your meeting wasn't too bad. Thrilled that you have called Robin and off in the NY. I bet you have a brilliant w/e.

Indigo - really good news about your blood tests - really reassuring to know that things are working

Newbrunette - welcome! Thank you for the link to the bread people. It looks great and I'm going to order some of the samples to see what we prefer. They had some yummy sandwich ideas too - it reminded me of how much I love bean hummus! Let us know how you get on with your samples. I was very worried about how DS would do the exercises and decided not to try them until we saw Robin - I was worried that DS wouldn't 'take' to them and be resistant etc. I needn't have worried - he loves doing the stairs and we all do it together. He has his fish oil 'sweeties' after finishing which does help. Only once has he refused and I didn't make a fuss, but did mine and he asked to do them a little while later. We also do a chair spin which he enjoys too. Robin really relates to the children and he made an incredible impression on DS - so he wants to do Robin's exercises to become big, strong and very brainy. I do worry a bit about some of the later exercises involving computers as he's never really looked at one, but already he is constantly surprising me! Also, I was a bit worried about how we would fit it all in, especially in the morning, but they only take a couple of mins.

We've been running a sticker chart with DS - 5 days in a row for a trip to London. He's never been to London before and it didn't look like he was going anytime soon as the most we managed was two in a row. I am delighted to report that hes just done 10 days (!!!!!!) in a row and I'm taking him up on the train to see the dinosaurs at the NH Museum and then on to see some Christmas windows.

NewBrunette - You will be able to get your DS to do the exercises. Everyone else (on here) has.

Robin will probably prescribe either the stairs exercise, or the spinning chair exercise.

The spinning chair requires him to sit in a chair and close his eyes. So you absolutely will be able to get him to do that one! And if you can't get him to do the stairs you can always discuss it with Robin and switch to the spinning chair.

Everyone's managed one way or another to turn the stairs exercise into a game if they had to. Either they get a tickle or a kiss at the top. Or they're competing with silly Mummy. Or using out and out bribery.

The thing is as their brain gets better they complain less and less about the exercises. Your DS might complain, loudly, for a few days, but chances are he'll become less and less resistant every time you manage to do it.

Until soon it's part of your routine and so he accepts it.

These exercises have to be done 3 times a day, and then you see him again in 8 weeks. But it absolutely does not matter if you don't manage to do them 3 times every single day for 8 weeks.

The whole TH treatment takes (usually) 12 - 18 months. And the stairs takes (from reading this thread) 4 - 8 months. So if you don't do it every day it might take you 8 months instead of 4. But you'll probably still get the next exercise at your second appointment, and he will still be making progress.

But I guess the main thing for me is knowing I did everything I could. If I'd gone to Robin and it hadn't helped, or I hadn't been able to get my child to complete the exercises - at least I'd still know I'd done everything I could.

I have 'wasted' money on things that didn't work. I don't regret a penny of it. Because it was only by trying everything that I found the things that did work.

Indigo - didn't realise that eyes had to be shut for the spinning chair exercise! Thank you. Also, never sure about how slow / fast to go.