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

Hi all,

Hope everyone is OK and greener, hope you are improving.

Something to share you may find interesting.

We had our second appointment with an occupational therapist today. (Lucky for us its a freebie as friend of a friend is doing a masters in sensory issues)

DS scored moderate/severe difficulties on all the sensory areas. Big problem with muscle weakness in shoulders and core stability. Exercises to help such as sitting on a gym ball.

Interestingly, occupational therapist thought lots of DS's meltdowns were due to sensory overload. Hence, different places (grandparents house), lots of people, 'new' things happening can trigger it. Things that are different to their expectations.

Familiar to anyone?!

OT said strategies to help 1) avoid parties/stressful situations. 2) talk through exactly what will happen/ what to expect 3) at another house, give him (and tell him about it) am area of space he can go to for 'quiet time' if he is feeling stressed (think I need one of these too!)

I'm going to attempt yo follow an exercise program with DS.

Maybe Robin sorts the brain (DS dyslexic) while this sorts the body? In for a penny, in for a pound!!

Hello everyone - sorry for very long haitus from this thread. Had a rather horrid health situation and have become a regular poster on the tamoxigang threads instead (breast cancer) fortunately for me, the final diagnosis after my op is as good as it can be and thankfully I avoid chemo and fingers crossed all will be well. Have been doing Tinsley House but not been a huge focus of life for the last month as you can imagine. However DS has been amazing through all of this (a 7 year old previously mega meltdowner) has taken my op, change of everything, in his stride, been amazingly helpful, making breakfast for him and his brother. Very proud mum. And we had a really good parents' evening a couple of weeks ago. NEVER thought I'd ever write that. Yes he fiddles and fidgets still but it's all going in and when they have tests he does really well now. Something's clicked. Feel like he can finally function at school, and school will work for him.

I do have a question though about Hemi T which we're supposed to be starting tonight. It doesnt' seem to make a noise? What am I supposed to do? Play any old music? and in which ear? Was so long ago since I skyped Robin I've entirely forgotten!

daft how are you and how is your DS? Thinking of you.

and [waves] to everyone else - will catch up on everything and hello to all newcomers.

Actually thinking of trying to escape to the new forest for a bit of half term. DS loves it there so much (the ponies in partic) and we could all do with a breather :)

Harriet, I'm so sorry to hear that. What a scary time for you all. I wish you well this year. Great to hear that your ds has risen to all the new challenges. What a star.

Where will you go in the NF if you go? We may visit my parents so will be near TH if we go. Maybe pm me if you make it and we could meet up? (Assuming my ds ok and you would like to!).

Mango, you describe my ds exactly as he was before we started TH (and now, but more on that below!). He was always anxious about any unfamiliar situation. Sensory issues came much more to the fore when he was anxious. Last summer/term though he was so much more relaxed about life. I'm sure TH will help your ds with all these things but OT won't hurt either.

Things remain pretty rubbish here. Ds still hasn't returned to school and often is not even well enough to have friends visit. He is still having seizures, albeit not as many nor as long. His behaviour, at times, has been a lot worse than when we started TH. Have had some very low moments :-(

We are about to try yet another medication which means reducing the current one for a few days first, so I am dreading the next few days whilst we go through ths process. Hopefully, it will not be as bad as I fear and this drug will work! I think we are both over our 'quality time' at home together! ;-)

Harriet -

I'm sorry to hear about your health scare too.

We are doing HemiT at the moment and you have to play music without singing (but we always just put any music on ...) and it has to be just in the left ear.

I don't know if that's the same for all children, but think it might be ...

Hi daft maul, do not know what meds you on, ds has epilepsy, the last drugs were a disaster and do not want to go through that again. His back to his old meds but in the meantime I am giving a teaspoon of Virgin cold pressed coconut oil morning and night, actually when he wants it he loves it. The ketogenic diet with was discovered in the 1920s and used before meds had a great success rare, but is a difficult diet to do, therefore not often used. It's to do with the fatty acids and ketone bodies. Coconut oil is high in the mid chain fatty acid so easy for the body to process and easy to add to the diet. Might be worth a try. Ds has only been on coconut oil 3weeks, no seizures yet, but his are quite random, but I am feeling positive about it. Hemp is also good.

Harriet, sorry to hear about your situation, glad the op result are good. It brilliant your ds has been there for you all, they rise to the responsibility. Ds2 5, is amazing when ds 1 is seizing or needs the extra support.

Thanks for your message Spiraling.

I think being told he had to go on the Ketogenic diet would be the worst thing in the world for ds!

Interesting what you say about coconut oil. I will look into it further. Does your ds eat it on its own, solid off the spoon? I see some recipes mention coconut flour, does this have the same properties?

Tend to put it in ds porridge in the morning, he also eats it directly off the spoon as quite solid then melts in your mouth. Lucybee does a nice coconut oil/banana muffin recipe. Also dr jockers is a bit of a fan. Also use it as a replacement for oil eg on sweet potato wedges, put the oil in the pan to melt it then spoon over. to the mistakes in my my previous message.

Yes, think the flour does the same

Hello! I'd like to join the TH club :) We went to see Robin late last year and took a bit of a break with stairs etc as DS got v poorly over Xmas. Anyway all going well now and due to go back mid march. I thought DS was doing really well seeming much calmer recently but he's taken a real step back last week or so which is upsetting - makes me realise how bad he was with tantrums and whining before we started. Just hope that this is part of the process. His biggest problems seem to be dexterity continence (5yo and still has lots of accidents) and social skills. Just wondering at what stage people have seen improvement in these areas?

Hi Harriet. Hope you are through the worst of things and glad the op was successful. Good to see you back on the threads!

daft What a nightmare time you are still having with DS. Can't believe medics have not got things under control yet. You deserve a medal!!

Hello to the newbies. aria In my experience, tantrums got more extreme and for frequent for 6-7 months, then started to get less severe and less frequent. And the 'good' times are much better (less low level stuff). Still having social probs- not pushing him in this area as too stressful (for him!)

Oh Daft how horrid, you poor things. Poor you and your poor DS it must be so stressful. I hope the new drugs do the trick and fast. I think we are going to the New Forest - just awaiting confirmation that the place I've spotted is available! If so will be there for a few days from Saturday, not far from Robin. I'll PM you if we do!

Thanks for advice skewif on Hemi-T we've got it! DS finds it much harder to focus than with Hemi P (so I'm sure that's good!) I've been slow pedalling a bit (mainly because DS took SO long to finish EE and we all kind of lost the will to do it) but he has now finished. Wonder how long most people take on the Hemis? It'll be a year in April that we've been going. When I think how I felt last Easter holidays, frequently reduced to tears with my worry and having no joy in parenting the little chap because I was so wrapped up in it all, it's miraculous where we are now. Even the grandparents say they're amazed and have gone from thinking I was nuts to thinking TH was a pretty good idea.

Aria another one here who had great progress followed by unstoppable, worse than ever melt-downs. I think they were about a month or so in, and lasted a little while - maybe a month. But then, when we finally came out of them, we've never reverted. Humphs and tantrums occur from time to time but in line with all other of DS's friends. Not walking on eggshells like I used to. Social skills have improved for DS slowly and bit by bit. He'll always be shy and socially reserved, that's his personality but he no longer struggles to function in a social society. He has great friends and enjoys time alone, and can make his needs known (before he'd never drink at school as too terrified to ask for water). I'd say things started to really come together after about 6 months. Co-ordination started improving earlier but again, it's bit by bit and still getting better.

Hello there, we'll also have been doing TH for a year in April, and only just finished EE. Dd still can't read without loosing her place, getting things backwards etc, but robin thinks her scores are good enough to stop. She has worked so hard at it, poor thing, it's a relief to stop, regardless....

Harriettv - we have been doing hemi p since July, hemi T since September. Robin said you usually do them for 4-6 months, but I think he also goes on symptoms, hence we are still doing them.

For the first time since we started, we had some good news at school this week. Dd is finally slightly ahead of where she shld be in two of three areas!! I was so uplifted, the teacher thought I was a bit bonkers!

On to my question...we have just started AIT (as audiogram suggested it would help and progress with TH has been so slow, and some people say this might speed up the responses to neurotherapies). Having completed day 1 I had an e mail from the sensory clinic saying DD shld not use any headphones for a year......which kind of counts out hemi T. I did tell Robin we were going to do it now, and the sensory clinic that we are doing TH, and both didn't see a problem in doing both....

Has anyone else done both? What did you do about hemi t?

Thanks

Hi bright stars. We did AIT prior to TH. We are not yet on to the hemi stuff (just endless stairs and teeth!). On the question of headphones, I was planning on getting some of those 'ear plugs' (that look a bit like plasticine), putting in one ear, then playing music near other ear.

Make sure you tell school about headphones. Found out DS had been using them in computers! OK to wear headphones round neck as music needs to travel through air before getting to the ear (I think!)

Hope this helps and please post if you find a better alternative!

bright stars according to the sound learning center, 'over the ear' headphones are ok (but not the 'in ear' bud style ones)

Why do they recommend not using earphones?

Think it's to do with heating things at an artificially loud level (rather than music traveling through the air first). The worry us that it can 'undo' the AIT gains. That's only my 'unscientific' understanding though!!

Hi Mango, thanks for your reply. Over the ear head phones would be a way around it, so I will check that out with the AIT practitioner, thanks.

As we have already done 6 months of hemi T I am wondering if Robin might think we can finish anyway......I can always hope!

Daft, the info we got also said headphone use in the first 12 months after AIT risks undoing the AIT, no idea how, but that's how I feel about most of these things we're trying!!

Hope you're all enjoying/surviving half term.

harriet so sorry to read your news. I had noticed you hadn't been around for a while. I do hope you're doing better and things are on the up. And your DS is a star for dealing with everything so well. Well done him!

Mango good luck with the OT exercises. I have wondered about sensory problems in my DS but something that can cause him to freak out one day, will be fine the next. He seems able to filter it better some days than others. It's maybe something I should read up on a bit more.

Daft how is your DS doing on the new medication? Fingers crossed for you that it's helping. What a rough time. Poor guy. What is the ketogenic diet? Is that the same as high fat/low carb? I've been doing low carb bootcamp for the last 5 weeks, 5 more to go. I haven't had carbs (other than veg) since 12th Jan. Tough to begin with but much easier now.

Spiraling I'm a coconut oil fan too! It's nice to cook with and I have eaten the odd spoonful too.

Aria hi and good luck with it all.

brightstars well done to your DD on her good report from school! I know what you mean about seeming bonkers. We celebrate even the small changes/improvements in DS and I don't always think others can see the significance.

It's a mixed bag here tbh. We dropped the stairs a few weeks back after DS suddenly became scared of everything. He didn't like the dark and wouldn't close his eyes to do the exercise. He seemed genuinely terrified. He wouldn't walk through the house without all the lights on, he was scared of the floor (always asking to be carried, not easy with a 4yo!), running to jump on a chair. It wasn't much fun and quite worrying. It seemed like that kind of "something hiding under the bed" thing that kids get, but worse. He also had a couple of extreme meltdowns that we hadn't seen for about a year. He went from zero to nuclear with nothing in between. Anyway, I mentioned it to nursery just in case he freaked out there. And then, just like that, he stopped doing it! Literally overnight. Really weird.

He is doing ok at the moment but has been quite emotional over the last couple of days. He really cried going into nursery on Monday, more than he did when he started. I felt awful. He's been off the last 2 days as he wasn't well but he is back in tomorrow and already saying he doesn't want to go. Hopefully this anxiety will pass too.

In a way, it feels like his progress has slowed a bit. I guess it could just be that most of his progress over the last year has been stuff we could measure, like language and social interaction, and now his brain is working on other stuff (emotional stuff?). It also seems like he is talking a lot of gobbledegook again. He used to do this a lot with his language delay/disorder but it really reduced as his language improved. Now it's really back. Sometimes it seems like he's noticed how other people interact and talk to each other, and he wants to do the same but either doesn't know what to say or how to say it. It's still disheartening though. I'm sure someone on here is/was a SALT. Was it you, Daft? Does that sound plausible?

Anyway, enough of this mammoth post. Just keep on keeping on, I think. We've another Skype in a few weeks.

Hi lookslike just wanted to give you a hug with your DS - it's awful when they're anxious, just the worst thing to watch. Weird that it turns on and off for the poor little thing, but I totally agree this emotional stuff is harder to measure. And easier to relapse into. But while DS1 does still fall back into meltdowns when exhausted or over hyped (computer) our patches of bad times pass quicker each time. I hope same starts to happen wiht your DS.

Daft I went to the new forest but blimey!! It was like being in the dark ages - I had no wifi at the cottage we hired and no phone signal for 10 minutes walk!! So I never manged to DM you - sorry, as if you were there it would've been lovely to meet. We did however have a totally blissful (if remote) time so will def be back. Have a date for my final op now and should be over by easter so might be there in easter hols. How is your DS?

Hi everyone else - coconut oil fan here too. Actually on my new anti-cancer diet I've just learnt how to make coconut milk and cream from a coconut and it's gorgeous! I make coconut 'ice cream' out of the coconut cream, bit of honey and a bit of vanilla. YUMMY for all of us! Friend pops pocorn in coconut oil too and it's delish!

Thanks harriet. The nursery anxiety, thankfully, seems to have passed too. Dropping him off when he was crying was just awful.

I'm off to soft play this afternoon with both DC to meet some friends who have DC the same ages. We meet up with the younger children every week but haven't met with the older ones for months since they all started nursery. I have been a bit glad of this as I would always be silently comparing DS to his friends, then feeling down for days because he is so noticeably behind them. Anyway, I'm not expecting miracles but hopefully today might be a bit better. Fingers crossed!

how did it go lookslike?
My DS is being a rotter these past two weeks. Completely volatile and flying off the handle at the drop of a hat. Am hoping it will pass!!

Hi harriet. In the end, our friends couldn't make it so it was just me and the DC. Still had fun but I had to go climb about with them rather than drinking coffee and watching from afar.

Today, however, we had a little party for DD's birthday. Had about 20 people in total over and DS was great. We saw some friends and their DD who is same age as DS, and he interacted really well with her. He said hello when she arrived and they played together well, as long as the games were the running and messing about type. I limited the number of people with children that we invited so as not to compare too much but he did really well. He's frazzled tonight and struggling to get to sleep. Too much going on in his brain, I think.

Your DS sounds just like mine right now. At times, I feel like I'm dealing with a stroppy teenager! The smallest thing will set him off and he'll just shout, moan, whine. It is exhausting!

We've had major issues with our broadband/internet/phone over the last couple of weeks and aren't able to get online to do the hemis everyday. The problem is slowly getting worse and can only be fixed by re-routing our phone line in from the road so not a quick fix. We're skyping in a week so I will need to make my excuses to Robin. Feel a bit like I haven't done my homework for school and I need to tell the teacher!

So World Book Day and usually DS refuses to dress up. This year however, all smiles and grins as we make a Mr Twit outfit, complete with disgusting beard. Huge progress!

Hi all, I haven't posted for a while but I could do with a little advice! DS1 started TH just over a year ago and made steady progress on EE. He had been dx as AS, struggled with reading and writing like many others. He took 10 months to work through EE but continually made progress throughout.
DS2 had his first appointment in January, he has never had a dx but has very strong ritualistic behaviours that were affecting the rest of his life so we've started him at TH too.

The problem I'm having is that DS2 scored a lot better at the assessment and although he had some issues with convergence they were a lot less severe than DS1 had. We've been doing EE with him for the last 6 weeks but he can't get past level 2! He's a very different child to DS1 and motivating him to do EE is much more of a drama but he is trying really hard and getting nowhere! Has anyone else had this issue? I remember DS1 going up a level at a greater rate than ds2 is, and ds2 is really getting disheartened :(