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

Shopping - big hugs for you. So difficult when we feel as if things are going backwards. We still have more days like that than not, so have no great advice but on thinking about it anything to do with blood sugar levels sounds like a good idea. Picnic in the car? Substantial snack on reaching home? Some protein? I've just bought some fab car shaped snack boxes which are proving popular. How old is your ds? We have a couple of Ros Bayley CDS which are great action raps and very good for burning off steam / frustration etc. Big glass of wine for you? Do remember, not long to go until the holidays

Ruggles- Thank you for the lovely flowers! All allergy stuff eczema, asthma etc is covered by Robin. Once your DS is fixed that will all go. These are all symptoms of underfunction.

I never cross pattern crawled and didnt speak til I was nearly three. Despite this I have a ist class maths degree from a top Uni but I recognise that I have huge ADD and probably some dyspraxia and dyslexia. When I have sorted my kids I intend to fix myself. I think this will help in the fight against dementia which my mother , grandmother etc etc suffered from. I had eczema until I was 32 and then suffered from Ulcerative Colitis. What we are doing for our kids will free them from all this type of stuff.

Had a lovely ( but strange ) evening tonight. Last year my DS sang solo in the Infant school play and was brilliant, happy. funny and I remember feeling very smug about it all. He was the perfect child. But hey...by March he was unhappy and by June was toe walking, flapping, screaming at loud noises and would only sleep with a weighteed blanket in my bed. I really thought he had some sort of degenerative brain problem. He was saying he wanted to die and hated school, life,everything, My world collapsed.... Fast forward to today and thanks to Robin ( and Indigo,Badvoc, Daft, Shopping et al) he performed in the Christmas play again. Much smaller role ( school very wary of him) but was happy and sang his head off.....

Really excited about seeing Robin on saturday

Shopping- Your DS is doing so well but so much of the ASD stuff is in the pre- frontal cortex and you are still on the cerebellum exercises. All this Christmas stuff is so hard.... I have added in an extra vegepa in the evenings - so my kids are now having 3 in an attempt to counteract! I agree with Indigo that more stairs and teeth probably won't help and may make him stressed.

I do extra vitamins, particulartly B6 and B12 which I think make a huge difference. They do straight to the CNS and help settle everything.

How about DS sitting in the front of the car next to you. This certainly works for us when DS being a PIA.

Spine tingles at the school concert story Beautifulpossum. What a full on year you have had. Its interesting that your ds became unhappy, I wonder if there was an autoimmune trigger (or something like that, I'm not very good on the technical stuff...). So good to read about all of your experiences too - I am super impressed with your degree, which is an incredible achievement for anyone but especially if you think you have some ADD too. I have some things which I'm going to sort out too.

Urban - I would go and see Robin if you can. He is an incredible man and these things are all so unique and personal. His books are great too but I think you would like to know if he can help you with your situation, to have that reassurance.

Can I ask how many vegepa's everyone is on? DS is 4 and takes 3-4 which I think is too much - he loves them and thinks they are sweeties which makes it quite difficult... I'm going to look into B6 and B12 too, thank you.

Am going to see GP next week to ask for a Coelic test for DS. Nursery say that he is so tired that he is struggling to make it through the day, he also has dark circles under his eyes, a huge tummy (which hes always had), tummy ache and very loose bowels (which may be too much vegepa..). We're going to go GF but I think we should have this tested first.

Sorry, should have said that DS bowels have never been great, but worse now we are on the food plan. He also sleeps for 12-13 hours at night and sometimes has a daytime nap too, so its not lack of sleep which makes him so tired.

BP...what a lovely story :)
Ds1 has been singing in the community this week...at church, at the nursing home etc.
2 years ago this would behave made him very anxious and unhappy.
Fast forward to today and he really enjoys singing :)

Ruggles...def try cutting out wheat and dairy.
You can do that for 6 weeks before seeing a doc and it will tell you a lot.
I am def dairy and wheat sensitive and much mum is coeliac.

Ruggles - there are 2 types of vegepa. You need twice as many of the chewable ones as the other ones. And in the first 3 months you need twice as much to build up your levels.

I think getting him tested for coeliac and the cutting out gluten sounds like a plan. But cut out gluten as soon as you've had the test, whatever the results say.

I think by and large our kids can't digest gluten - but don't actually have coeliac.

Can you cut out dairy straight away? See if it helps or not.

Remember it takes at least 6 weeks for dairy to leave the body - and 6 months for gluten.

When DD cut out dairy we certainly felt she got better and better over the next 6 weeks.

And I guess it makes sense to try DF separately to trying GF.

Badvocasta - love hearing about all this singing!

Thanks for all the diet advice. I think I am going to have to take a deep breath and get on with it. We have so many allergies - ds can't have nuts, eggs or sesame and I can't have fish or quinoa. DH hates carbs and DD is useless with veggies unless they are hidden. I am going to sit down with my week plan and try to figure it out. Have been looking at cook books / sites this morning. I think my main problem will be dairy as cutting out gluten is more straight forward for us as we don't have too much anyway.

As ever, I have some questions... Please bear with me and all my questions

• Do any of you use dairy replacers? Alpro milk and yoghurts? Redwoods dairy free cheese? Have you cooked with any of these?
• This may sound really silly, but are goats products ok? I know they are dairy, but I suppose its wishful thinking....
• Gluten free oats / bread / lasagne sheets / Doves flour?

Most of our snacks / puddings are cheese or dairy based and lots of the menu plans I've looked at online feature eggs and nut butters / drinks etc quite heavily. Do you think we'll miss out on calcium without the dairy?

Deep down I know all of this is doable and desirable, but it seems a bit overwhelming atm.

Thanks in advance for all the help.

Check out paleo recipes ruggles x

We use Almond Milk (which I think is nicer and healthier than soy milk) and Coconut milk.

I didn't know you could get dairy free cheese - I will look out for it.

We get soya custard which the kids love :)

We use gluten free flour and stuff.

But - if it's easier to start off cutting out gluten, then start there. You can always cut out dairy in a few months when you've got into the habit of being gluten free.

Take it step by step. A few months is nothing in the grand scheme of things.

For snacks the kids have fruit, rice cakes, popcorn (home made so it's hot) gluten free dairy free bars (like 9 bars - you can get from Tescos and Holland & Barrett). gluten free biscuits, crisps

Re vegepa- ds took 4 chewables per day for the first three months. We then reduced it to 2. We've since upped it to 3 a day because they come in rows of 3 and ds didn't get his OCD traits from nowhere :)

Gluten and dairy free is just a step too far for me!

Like you Ruggles, we have allergies to contend with. Ds actually doesn't have a huge amount of dairy but many of his snacks would include gluten - he doesn't like rice cakes (can't blame him!), popcorn (unless cinema type and covered in sugar!) and couldn't eat many of the snack bars available because of the nuts.

He has had so many years of avoiding certain foods that I think he would hate yet more restrictions.

I'll just keep pushing the protein and hope that Christmas doesn't bring too much sugar (feint hope!)

Daft - you absolutely don't have to be gluten free / dairy free.

Robin doesn't recommend it basically because it is a step too far for most people.

Robin absolutely believes that my kids won't need to be GF / DF after they've finished his program. (Which is the other reason Robin doesn't say you need to go GF.)

And I truly hope he's right. But in the mean time it has helped all 3 of mine a lot, so I'm pleased I've tried it.

Should point out we are not GF and cf but we have cut down a lot.
I am not sure I could do it full time anyway but the thing is even if you only do it for 60% of the time it will have a beneficial effect on your health...
Ds1 has only ever taken 2 vegepa chewables per day.
One thing I have done is use GF pasta for example. Doves farm is the best...tastes just like normal pasta.
Also using GF flour and oats but tbh it's very expensive and I have gone back to regular.
Another thing I have done is use things like rice cakes/popcorn for snacks.
Ds1 wont touch fruit so fruit purée is the way I have to go :(
He does eat peas and sweet corn (under sufferance) and baked beans.
All in all his diet is pretty good, albeit still too carb heavy. Nut I will work in that!
His appetite is greater than it has ever been...partially his age I think - coming up to puberty? - and also longer days at school.
He came home today very proud :) he has moved up another reading level :)
Got our Skype appt with robin in an hour...will let you know what he says...

This diet thing does seem like another big leap of faith, but I wouldn't be considering it if DS's digestion wasn't struggling.. Daft, I know exactly how you feel - this allergy thing is a slog. Maybe I just need to change my mindset about it all. Do you think its ok if I take our own food when we're asked out for tea?

Goats milk isn't casein free, which is the offending protein. A shame as I was really hoping that no one would notice the switch!

Badvocasta - interesting that you haven't gone totally g/f but cut down. Thanks for the paleo diet tip - I've found some incredible sites, including one which is about to publish an ebook on doing paleo with no eggs and nuts. I hope you had a good call with Robin.

Indigobelle - I am going to look into the bars, although lots of these things have nuts in. I suppose I can also make Robin's recipie's up with g/f oats. Does anyone make these? We can't get enough of the seed one...

Shoppingbags - I am very similar. I don't like my conditioner to run out before my shampoo, and if it does I have to donate it to the dcs and buy new ones...

My DS is underweight and not really growing. He has always had gut issues and gagging issues, very pale, low energy and dark rings under his eyes. I have intolerance to gluten and dairy, Ulcerative colitis and MIL is celiac. I know we should all be GF/DF but just cant face it.

What I have done is make both DC gluten and dairy light. Use gf bread for toast and lactose free milk. I also in troduced a dysbiosis protocol designed to repair leaky gut a month ago ( which I am sure we all have chez possum) In the last 2 weeks my DS is no longer pale, NO TUMMY ACHES, eating way more and coping really well with the protein breakfast. If anyone is interested I can give details of the 3 probiotic products. |Hoping this will be enough to get us through the programme asap.

Daft- So glad you are back posting. Do hope DS seizures stay away.

Loving all our DD confessions. Robin does say in his book that 70% of his patients have parents with DD

BP...well in our case my dh is erm....well. Yes. You get the drift :)
The apple doesn't fall far from the tree as we say in these parts! :)
Ruggles...I am going paleo. It makes me feel so much better and I know that it wil have a great impact on my long term health (which has been rubbish for a long time...)
I think I have been so focused on ds1 for so long...I have sort of just peddled along not really looking after myself but I can't do that anymore.
Appt with robin went well.
He is thrilled with ds1s progress.
Oh, I can't be bothered with all this ds1 stuff anymore!....my son is called Tom. You all know so much about him, it seems silly not to tell you his name :)
Tom was given hemi opk which is only 1 minute per day - much to toms relief :)
He does find it tricky though which proves he needs it I guess.
The next phase is brain games and then....I think we will be done.
Wow.
What a great but terrifying thought! :)
Robin asked me last night if I had anymore worries wrt Tom and I could truthfully answer "no"
A year ago - almost exactly actually - we first went to see robin. we were so worried and stressed about him.
And here we are a year later and things are so much better,
I know all of you are at very different stages of the Th regime, and that our kids issues are all very different,but trust that you are doing the best thing for your dc. I know it's hard at times. And scary. And upsetting.
But you will get there.
I sound Like Del Boy from only fools and horses but....."this time next year..." Instead of being millionaires your kids will no longer be held back and imprisoned by their asd/OCD/dyspraxia/dyslexia.... :)

BadVoc - great news. So pleased for you and Tom.

I too can't believe where we are compared to where we were when we started TH.

DS Alex agreed to see Robin in Oct (I think) last year - because he beat up a girl at school and felt so terrible about it. Ie he knew he needed help.

He has now been at secondary school for almost a term - and he has had no transition problems at all. This is truly amazing.

I haven't spoken to the SENCO at all. School hasn't contacted me at all. There have been no incidents. He has no IEP.

He's joined the school council and rugby and debating and school play. And got top marks in all his end of term tests.

Totally different to 12 months ago.

Fabulous news Badvoc and Tom and great to hear Alex's progess too. It was the nativity dress rehearsal at school yesterday and ds' teacher came up to me at home time to tell me how kind he had been to a reception child who had stage fright. He held her hand, gently coaxed her up on stage and held her hand throughout their scene. This is a boy who other children were frightened of just a year ago. Made me well up a bit.

Oh shopping! How lovely!
:)

The boy other children were frightened off is certainly familiar. :(

Luckily it seems that kids do forgive and forget quickly and our children can move on from their problems.

Once they're improved......

The kids teased Alex quite a lot - but after the stairs exercise his running improved so much that he could catch them - then they stopped teasing him.

Still in secondary one kid from primary tried to tease him. But Alex can now control his temper enough to not react. And eventually the kid stopped doing it.

We moved schools in September which worked perfectly. His new friends have never known that boy and never will :)

nativity was lovely. Dd an adorable calf. Ds a slightly loopy looking chicken. I refrained from ranting about why my kids were not picked to be angels (dd significantly more beautiful than the angels natch) or kings ( ds significantly more regal than the kings :) ) and had a lovely time. Ds was star of the week for his kindness to the little girl in the dress rehearsal yesterday. I am a very proud mum.

So you should be shoppingbags. I'm having a sneaky log on, very quickly while DH isn't looking . Back for more chat tom, but wanted to share some wonderful news. We went to a massive tractor party this afternoon and DS joined in - in fact he led the pack. There was a scrum over Father Christmas, who arrived on a tractor and DS was in the midst of it all and emerged with his pressie, beaming from ear to ear. We have never, ever had anything like this before and I am stunned, excited and have almost been doing rain dances all evening. 4 weeks on diet, 3 weeks on the programme?