Tinsley House Support Thread Part 4!!!

[Mangomanila]

This thread is for anyone interested in the Tinsley House programme. All welcome!

A brief synopsis of stage 1 of the programme can be found in the books "is that my child?" Or "the brain food plan" by robin pauc;

Stage 1 of the TH therapy consists of:

1. Daily Multivitamins

• Omega
• Zinc & Magnesium

1. Healthy eating

• High protein, low sugar, no artificial sweeteners, additives etc.

1. Specific neuro development exercises done 3 times a day

• Takes about 4-5 mins

And that's it smile

Stage 2 involves computer programmes to sort out eye tracking and convergence which over 80% of children with reading/writing problems have.

• www.engagingeyes.co.uk

Saludynam has magnesium, calcium, vitamin d and zinc. Can I add floradix multivitamin or will I be giving him too much calcium and vitamin d?

Floradix do an iron supplement with all the b vitamins and vitamin c. Would that be better?

Anomaly my DS takes vegepa, Saludynam and floradix kindervital. The kindervital is the multivitamin. I'm sure there isn't any crossover between the 2. I remember checking but it was a while ago. I'm sure they are the ones Robin recommended when we started. DS likes them, which is half the battle, so I won't be switching!

I used to get all 3 on amazon subscribe & save, but they stopped doing the kindervital so I cancelled the others and I buy elsewhere now.

Hello Indigo and Badvoc, so lovely to see you on here again! /emo/te/1.gif

Anomaly - I give Floradix Saludynam, Floradix Kindervital, Vegepa orange chewables and also Bio-Kult probiotic.

I don't remember if Robin 'recommended' Saludynam and Kindervital but he was certainly happy with DS1 taking these.

Looking at the contents, there is some overlap - calcium & Vit D. The combined amount of calcium is less than 100% of recommended daily allowance, but for Vit D it's about 200% RRA. As I understand it this is still well below the 'toxic' levels for Vit D, but I'm no expert so perhaps check with Robin or a nutritionist.

Looks like Floradix Liquid Iron doesn't have Vit B3, don't know if that matters. However I think iron supplements aren't generally recommended for children?

Saludynam and Kindervital were the ones Robin suggested we use when we started, though this was 18 months ago so maybe he has changed his advice now. He said these ones as they didn't contain any nasties, sweeteners, colours etc, and would cover all the things DS needed.

I remember being shocked that the multivit I had been giving, the nhs one recommended by the health visitor, contained something that was 'red' with a face in my little book of additives.

Do any of your DC have keratosis pilaris? Mine have always had it, DD worse than DS, on upper arms and legs. It officially has no cure but has been linked to wheat consumption. I had noticed DS skin had calmed a lot in recent months. It really flaired up a couple of weeks ago, coinciding with me allowing him a bit more wheat than normal. Last week, we reduced the wheat again, and it's virtually disappeared in a few days. Completely unscientific, granted, but it makes me like wheat even less than I already did. If only I could reduce the amount in my carb-loving, cheese-sandwich-addicted DD!

LooksLikeRain - thanks for that link. DS1 has bumps all over his upper arms but I thought it was caused by omega deficiency.

I can't remember if going gf helped or not though.

I don't even know if he still has it. But very interesting that it has a proper name.....

Indigo thank you for the probiotic recommendation. All I can say is WOW! Just wow. Tmi alert - but DS started taking it on Sunday and has done a poo 3 days in a row! While that might not seem like much to be proud of, I can't remember when he last went daily. It was probably March/April, and has been every 4 days or so since then. The doctor wasn't bothered because he always cleared it himself, but I just knew it wasn't normal. Anyway, thank you!

LooksLikeRain - brilliant news.

I didn't realise it was so good. :) as my DD didn't have that problem to start with.

The nutritionist put her on optibac (probiotic) for 6 months and then changed her to a prebiotic for 3 months.

And then she was allowed gluten again. In total she was gf/DF for about 2 years. And now she tolerates it fine.

Hi, I've been reading the TH posts now for about 3/4 months ever since I started looking for a solution to my DS's onset of tics which began a year ago and got really extreme in early September. I'm so glad I found this.

We saw a neuro psychiatrist last month and she said we should assume that DS has Tourettes and should put him in talking therapy to help him understand how to cope with his symptoms. (He has also developed lots of OCD type behaviours.) I was distraught by her prognosis and started researching like crazy but all the mainstream medical research was inconclusive as to why the tics had started and why they developed from minor twitches to full on screeches and complex motor tics. DS has no other developmental problems, is in the top set in reading and maths in Year 1, is sporty and has lots of friends. With the vocal tics, he became really fearful of being in school in case one slipped out and his friends heard it. So he would hold them in until he came home and tic all evening instead.

We visited Robin for the first time about a week after seeing the neuro psych and literally within 4 days after the appointment, DS completely calmed down, less tics, less anxiety. I called Robin to ask what he'd done and he said that although he wished he could take credit for it, it just wasn't possible for any of his treatments to work within that timeframe. He said the earliest the changes would kick in would be at around the 2 week mark.

We are doing Hemi Right P, stairs, toothbrushing. DS also takes Saludynam, Kindervital, Vegepa and Bio-gaia (a probiotic recommended by the consultant for my other son who has colon issues). We also overhauled his diet to exclude all additives on the red list - his diet was good before but it is now super healthy. DS has been tested twice for allergies and intolerances so we haven't gone down the gf/cf/sf route.

It's been just over three weeks and DS is doing so much better. My instinct tells me he wouldn't have made such progress if we hadn't gone to see Robin. I took the view that if we went to TH and it didn't work no harm done and if it did, that would be a bonus. Maybe it's the supplements that have made the difference, maybe it's the elimination of additives, maybe Robin is on to something when it comes to the left side of the brain being underdeveloped...

We see Robin again in 8 weeks and I'm curious to see where we go next with his approach. The thing that appeals to me about him is that he promises nothing. When I poked into results he told me that he would be amazed if I didn't see any improvements before we met again. That was good enough for me as all I wanted last month was some hope that DS would feel better sometime soon. I'm a natural sceptic but am really grateful that TH exists as without it we would have been lost...

Welcome nordcelt and great to hear about your progress.

Hi has anyone started RRT whilst doing TH?! Been doing TH and EE for around 7 months with good improvement to vision issues, and balance and therefore confidence. Currently on Hemi Right T, and eye tracking. my main concern is now Auditory processing issues and we have been referred to GOSH for an assessment for APD in a few weeks time. DD is frustrated about her inability to spell, and hear words starting with V, Th, F. The SALT recently confirmed our suspicions about problems with high frequency sounds, and because I know she also really struggles to block out background noise, I rushed off to a therapist who did the Johansen Listening Programme. He assessed DD and said she had retained reflexes that he would need to work on before we could start the Johansen (starting with Spinal Galant which was very strong). I don't know what to do now!

I think you should do one of the listening therapies - but not RRT.

RRT is good, but i don't think it should be done at the same time as TH

So I think you should do AIT (auditory integration training) instead of Johanssen.

Best bit about AIT is it only takes 10 days.

It really should help a lot with the auditory problems you describe.

Hi, can I ask a quick question?

My daughter has developed what I can only see as tics, visual tics
She's blinking and also bringing her hand close to her face whilst making this sound ( like a helicopter noise?)

Took her to the opticians and her visions fine, she could read all the letters/numbers/colours. She had a very slight stigmatism in one of her eyes.

Will she benefit from a behavioural optometrist?

Sammy - I don't think a behaviour optometrist helps with tics.

I think Tinsley house does. And that is what I'd start with.

But probably ring Robin to ask him first. He'll tell you if he thinks he can help or not.

Hi everyone
Sammy - we did brushing for RR at the same time as TH. I did worry that it was going to be too much, but it was ok. I was at the stage where I would have done anything. It worked quite well together as it was very relaxing for DS and bonding too. We used to listen to audio stories whilst doing it before bed. The therapist originally thought it would take 10-12 months, but it only took 7. I did wonder about doing AIT, but over time DS's sound issues have disappeared - just as Robin predicted. I think all of these things help, and some help some DCs more than others. Robin does say just to hold out and he may well be right, but sometimes it feels good to be giving it your all. Good luck :)

Thank you so much Indigo & Ruggles. I originally decided on Johansen rather than AIT as it can be done within our normal routines, and I thought that as Johansen took longer to complete, the positive effects would last longer. I think there is a Berard practitioner in Reading that may supply AIT to do at home so will look into that a bit more as a quicker fix is appealing (if the effects will definitely last as long as Johansen). Staying in, or getting to London for 10 days/taking more unpaid time off work/getting someone to look after our cat, dog, guinea pigs (I'm a single working Mum) seems very difficult.....But I know the centre in London has had great reviews, and I don't know if the Reading one has the same. I'd be grateful if anyone can add anything to these deliberations as apart from MN I've no-one to bounce any of this about with! I am worried about overloading and possibly undoing progress already made but am conscious of Dd's struggles and frustrations and time slipping away. A bit of Listening therapy alongside TH seemed to fit well, but I didn't reckon on retained reflexes and now all of that makes perfect sense as well! Anyway enough of my ramblings, I'll look into distance AIT and try to make a decision then...thanks to you all, this thread has honestly given me so much hope & inspiration, and has been a life-line. It does however keep me up all night reading it when I should be getting some sleep ;0) xx

I've used both AIT places you mention.

I can't actually tell you if they were as good as each other or not. I took my 3 to the London place when they were each in Y3 and I absolutely raved about how good it was. And it was. Absolutely fantastic.

Then I took DS1 and DD to the reading place beginning of last year, when he was in Y8 and she was in Y6 and it also helped both of them. But it didn't help them as much because they weren't as bad in the first place. So I can't compare the two therapies.

I do know DDs reading speed increased by 10% that week, after having stayed still for a long time. And her speed ( reading and processing) continued to increase all year.

In fact I credit AIT (both lots) from increasing her processing speed from under the 1st percentile to around the 40th percentile.

So I certainly would recommend the reading place. It's 10 days. Almost no inconvenience as it's done at home. And half the price of the London one.

I saw DDs English teacher - and her work - yesterday. A year on from AIT. And her teacher didn't know why I was worried about her

Her spelling was not brilliant. But really it wasn't too bad at all. Most words were correct. And all of it was readable.

She'd written a piece about herself and she wrote

"I used to have severe dyslexia but now I don't.

If I could have any super power I wouldn't chose one because I'm awesome as I am" :) :) :)

(Those weren't her exact words. I don't have a copy of it. But that was the gist of it)

For the first time ever I've come away feeling good after talking to her teacher.

Hi everyone, it's great to see the thread spring back to life and it is so good to have Indigo back. While you are here do you mind if I pick you brain? As I have said dd2 is doing really well following Tinsley House and AIT during the summer but as always in life I am now worried about dd1. Academically she has always been ahead but she suffers with anxiety which is getting very bad and is now impacting on her school work. It is awful to see her in such turmoil with lots of OCD habits creeping in. What part of Tinsley is most beneficial with regard to anxiety? Also is there anything else that would help retained reflexes for example?
Then I have an 8 month old and and with everything my 2 eldest struggle with I just know the baby will follow suit one way or another. What would you do differently with a baby knowing all the stuff that you have learned with you children? Would you go GF straight away?
Thank you all so much this thread really is a life line when you have nobody to talk things through with in real life.

Travelling - I'm absolutely convinced all of this stuff is related, and is genetic. I'm one of 6 siblings, and not only do all my 3 DC have developmental problems, all of my siblings have children with developmental problems.

I know DD is GSTM1 absent, and I presume all my nieces and nephews are as well. The significance of this is that all of their problems (I believe) is due to a digestive problem. (Caused or exasperated by being GSTM1 absent)

So gluten and dairy are not digested properly, which leaves peptides in the blood stream, which causes developmental problems.

But also vaccines aren't properly flushed out and residues from the stuff that contains the vaccine are left in the body which gets into the blood stream and causes developmental problems.

So if I had another baby (which I most certainly won't!) I would not give her any vaccinations and I'd keep her gluten / dairy free for a long time.

I know all my 3 were vaccine damaged. DS1 was properly scarily damaged. He went blind and developed nystagmus and regressed the day of his 3 month DTaP vaccination. (He regained his sight about 6 months later, but he still has some nystagmus)

No health professional doubts that he was vaccine damaged.

So we didn't get DD and DS2 vaccinated. But the HV kept going on and on and on about it. And I didn't know then what I know now. So when they were 2 and 3 (they're a year apart) DH got them vaccinated.

And that is when their problems started. They didn't regress, but they stopped developing normally.

For example DDs word finding problems started then. Her speech was absolutely fine till she had her vaccination, and then she couldn't learn new words.

For example, In Y4 I asked her what she did in Maths and she said 'a line and a dot and a dot' - she had a 3 year old vocab at 8.

So there's no way I'd give a baby related to me vaccinations or gluten or dairy unless somehow I'd proved they didn't have a digestive problem. I'm not exactly sure how you could prove that.

Not sure what to say about anxiety. Both my boys have anxiety, but it's never got to a very worrying point.

And I think it's getting better not worse as they get older. But I can't pinpoint what we did or why.

DS1 (Y9) has a learning mentor at school, who he talks to once a week. That certainly helps. And next year when DS2 starts at secondary he'll get the same. (At the moment he just talks informally to the TA)

They both hate driving and are very scared by it. Fixing DS1s car sickness ( 2 years of cranial osteopath) certainly helped that.

I do think RRT (done through the sound learning centre) helped DS1s anxiety. But it's hard to remember the details now. That was Y4 when he did that.

Lumosity helps the pre frontal cortex, so it's probably that bit that helps anxiety. But I'm not sure. If you email Robin I'm sure he'd tell you (and then you can tell all of us)

I have to confess we never finished lumosity. I did a very stupid thing. It was helping DS1 and DD so much that I started DS2 on it. But he overtook them in about a week, after they'd been playing for 6 months.

Then it was very hard to get them to continue to do it. So I gave up.

But I also gave up because at that point (and now!) I was pretty happy.

Dear everyone, having read all of these latest posts my heart is sinking a bit because I am thinking maybe we have to go gluten and dairy free too but I am dreading it.
I thought we were pretty good with my ds eating lots of whole meal grains such as Kamut and spelt but he has always had digestive problems and was lactose intolerant from the start, with tropical fruits making him v sick. We are currently out of the UK which means even reading labels is tricky never mind finding the items. I wonder if anyone can recommend a good book or website I can refer to to find out what I could give as alternatives. I know about buckwheat and whole grain rice but the only labelled gluten free products I seem to see are all not whole meal. Also my ds hates potatoes so it gets tricky. Many thanks!

Indigo - Wow! Just wow! Right, i'm giving it a go, got to be worth a try and whilst i realise it may not cure her issues completely, if I can improve any of her struggles it will be worth it. And goodness Indigo, you stay up later than me! I have made contact with the Sensory Clinic and waiting to hear......i started wondering if i should leave things until after her GOSH appointment, but i'm convinced i need to try some auditory therapy and so will just take whatever appointment comes up first.
Recent posts mention GF ( which i've considered trying) and "GSTM1 absent"
My Dd doesn't appear to have digestion issues, she has always drank a lot of water which I think cleans things through, (and from very young had a painful & upset tummy if she had a lot of refined/natural sugar products) , however she is quite windy and I would like her tested to be sure.
I'm really sorry Indigo but can you explain GSTM1 absent a bit. I've googled it but got very scientific papers! Would a hair sample cover both GF and GSTM1 absent?
Travelling I think the Moro retained reflex may be worth investigating for anxiety? It was something that cropped up in my recent investigations into retained reflexes....

Sparky - I couldn't sleep last night, and now I've been shattered all day :)

AIT really, really is worth a go.

The DNA tests DD had were very expensive, in the region of £1K, so I wouldn't recommend them.

Dr Goyal told us she needed to be GF after getting her to straighten her elbow - she is hypermobile. And that was enough to convince him she wasn't digesting GF properly.

Can't remember if it also showed up in the blood test. Or if it was things like GSTM1 absent which showed up which reinforced his opinion that she should be GF.

Basically, how I understand it, the undigested peptides from gluten cause hypermobility as well as neurodevelopmental problems. If your DD is hypermobile google gluten and hypermobility and see what you think.

DDs other symptoms were purple circles under her eyes and bloating.

I agree about the moro reflex for anxiety. I think that is what DS got rid of in Y4 that improved his anxiety. I'd forgotten that......

Actually, thinking about it, she def did do a food allergy blood test. But can't remember what it showed. The only thing we had to cut out was gluten and dairy.

And the other thing I remember was Dr Goyal said this was all related to my mother's auto immune disease (lupus).

And he got me to straighten my elbow (I don't have hypermobility) and said 'It's skipped a generation' - which really chilled me.

But asking round, apparently hypermobile elbows are very common in Mums side of the family.....

Thanks Indigo, I did the elbow test and neither Dd or I are hypermobile. She doesn't have any other signs. Found a site called Gluten Free Society which links gluten to auto immune diseases like lupus.... Also psoriasis - which is something that I suffered with years ago until I cut out dairy, yeast and sugar. Nowadays I constantly have just a little bit of psoriasis on my elbows but so small it doesn't bother me. However, I'm thinking of having Dd and myself tested for intolerances - will keep looking for a reliable and reasonable way of doing it! I hope you get a good nights sleep tonight!,x