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

We're back! Had an amazing holiday and feel like a new person - incredible what a change of scene, time doing nothing, a daily walk, lots of food and a laugh with your husband can do to you. I got chatted up in a coffee bar and bought some new clothes!

Have been looking through all the posts and so much has been happening. Haven't read it all yet, but will be back tom for a proper catch up.

PS - DS was a star. So much better than our last holiday 7 months ago. xx

Welcome back Ruggles, you sound rejuvenated. We've had some post-kids holidays so appalling I'd have been seriously tempted to bugger off with the coffee shop bloke!

Lovely to hear ds enjoyed it as much as you. One of best things we've noticed since doing TH is how much more a part of family life ds is becoming. Over the past month he's started really leading his little sister in play - this morning he was dragging her round the house on a 'magic train'... and it all felt so NORMAL. Amazing!

BP: i'm married to Mr Cynical and even he thinks Robin is a genius. We're back there later this month. Actually that's just reminded me... one of the 'stations' ds said was on his magic train ride this morning was Robin's house.

I'm around for some of the Easter hols for a meet-up if anyone happens to be around

Happy mothers day lovely ladies
I have flu.
I know.
It's ridiculous. Shivery, fever, night sweats, nausea, cough....lovely.
Meal cancelled :(
Spent since noon yesterday in bed.
Dh so worried last night he called ooh gp!
So....just in case I am not long for this world..(drama queen, me?)....welcome back ruggles and lovely to hear the story of your ds playing with his sister worrier :)

Hello everyone!
Sorry to hear you are unwell Badvoc.
Glad you had a good break Ruggles.

We went to see Robin today and are just home now.
It was our first follow up visit and I think it went well.

From observation he felt that DD had more eye contact and that her face was more expressive. He also said he could understand her a lot more (she has very poor pronunciation).

He did some tests on her like last time and her retained reflexes in her feet are gone on one side and nearly gone on the other. She was concentrating on his nose better when he was bringing in the stick with the red ball on and a few other things (I have no idea really what this means, maybe some of you do?).

Any way we are to carry on with the spinning chair and stairs and also do right hemi p.

All in all good. I feel a lot more positive than I did last time.

DD remembered Robin and enjoyed herself and both DD and DS loved playing on the climbing frame although it was freezing down there today.

A bit worried about how we are going to fit all this in to our day. But we will try.

:)

All those improvements mean her cerebellum is more balanced. Hemi right p only takes 5 mins so isn't too onerous. We do everything. First thing in the morning but then ds wakes up at ridiculous o'clock so we have time then. I find he's too tired after school to be good for anything

Sorry full stop in the wrong place there

Hi, haven't been on for a bit. Hope you're all getting on well. Had a lovely Mother's Day. I was taken out for lunch, which despite my grumpy children, was lovely. Now looking out a window on a white wonderland outside. It's March, for goodness sake, and it was like a blizzard round here earlier!

Our first week since seeing Robin went really well, and by the end of the week we were up and running on supplements, exercises and the diet moving in the right direction. Then DS and DD caught something and we spent most of the second week at home. Cold, cough, temperature, the works. Diet slipped, as did exercises for a bit but he just wanted to sit on the sofa and watch cartoons! So onwards and upwards for next week. Back on track. We haven't noticed any changes yet, but our little false start hasn't helped. What kind of things did you notice first?

We also had the last part of DSs autism assessment. We get their feedback in a week and a bit. Not sure what they'll decide. They said there's loads of great stuff he does, but definitely some stuff that he should be doing/doing more of, but isn't. Ho hum, just need to wait. I hate the waiting.

Can I ask if any of you noticed any constipation issues when your DC started the supplements? DS hasn't 'been' for a few days now, though he was unwell and not eating much. And he has had bouts of this in the past. I was just a bit worried it might be linked to the vits, mag, zinc etc. Anyone else?

Itwillbebetter ? welcome and hope you get on well with your appointment. I love the sound of his favourite foods! I was very worried that Robin wasn?t going to be able to help as my DS issues seemed a different mix than others. I think this is one of the great strengths of TH ?the programme helps the whole brain, and there by helps our DC with their own unique challenges. Let us know how you get on.

Prince ? EP sounds really appalling. Don?t they realize these are our DCs and how much we worry about them? Glad to hear that you had a good review with Robin this time.

UniMama ? Welcome. Not sure if you are still read reading, but I hope so. I am so pleased that we started seeing Robin as he has helped my 4 yo DS enormously and this has had a very positive knock on effect for the whole family, especially me. We read the bad stuff too, but didn?t think it was that bad ? DH felt that is this was all that could be dragged up, it was hardly the end of the world. My DS has ADHD, dyspraxia and some autistic traits. He is doing so much better ? he is much easier to deal with and so much happier. We are only four months into the programme and know we have a lot to look forward to as well. Looking back, I do not know how I was coping and our outlook seemed bleak. We have just had our first appointment with Dr Goyal ? there is quite a long waiting list. He was amazing too and I think the Biomed approach can work well alongside TH. Please pm me if you would like some more info.

Badvoc ? sorry that you?ve had such a tough week. I hope you are on the mend and feeling better soon. Fantastic news about the job, it sounds ideal. Are you going for it? Did you have any joy with the Church hall? Good luck with parents evening.

Worrier ? lovely to hear about your good progress with DS.

Lookslikerain ? don?t worry, the first couple of weeks are the hardest while you get used to remembering everything ? very soon it becomes second nature. DS diet change had the opposite effect , in fact, still does? Prune juice or lots of apricots?

Hello Beautiful and everyone else.

Easter Meet Up

Ok, have my clipboard out to organise an Easter meet up. I think quite a few had plans for the first week, but wondered if anyone is interested in meeting up sometime of week commencing 8th April? I am not sure if a weekday or weekend is best?

Windsor Park has been mentioned as a good spot. I'll try and think of a wet weather contingency plan...

It would be great to have a get-together and meet some of you I know that IB is keen to come along too.

If you are interested please either PM me or post with a preferred date. To kick off, I am free all week!

Hope so xx

I am free that week and would be interested in meeting up. It would be me and DD (4) and DS (6).

Have never done a meet up before, but we all have to start somewhere right?!

I'm in! Me, ds (6) and dd (4). It's a bit of a trek for us so would struggle to get to Windsor before 11. Lunchtime picnic type thing would suit us well.

Hi,

Have just got back from our first appt and all good. We are embarking on our journey of stair climbing! Just quickly though could anyone share with me the cheapest places that you've found for the Vegepa, Kindervital and Floradix Saludynam? With 2 boys taking them its going to be pricey
Thank you x

Prince and Shopping - that is great! I am so excited about meeting up. Picnic lunch sounds great idea. Have found a possible back-up plan too - just in case it rains snows!

itwillbebetter - welcome to the journey! I buy Vegepa from their website - follow link from THouse site and enter discount code for 25% off. Buy the Kindervital and Floradix on subscription from Amazon Prime. One month bought from some pharmacy on Amazon, but they were useless on delivery. These were the cheapest when I started 4 months ago, but haven't checked since. Good luck it with it all! I'm just making Robin's chicken burgers - they are yummy.

Too much ice for us to make it school this morning and house seems cold even though the heating is bouncing! I think I am ready for spring

Ruggles - I hope you had a good day. I was stuck in with DD as she was sick last night and refused to leave the house. We did lots of painting, play-doh and we (well I really) made a pasta necklace.

I just came back from DD's parents evening and the first thing her key worker said was that her speech was so much clearer so she is able to understand her and she is talking in sentences. She really was keen to let me know how much better she thought her speech was.

It is great news and now I am impatient to see lots more changes. My hopes have been raised.

That's lovely Prince. It feels amazing when someone else notices too doesn't it? :)

Prince, that is fantastic - I bet you are on cloud 9 . Agree with shoppingbags, its even better when someone else notices too! Hope DD is feeling better and enjoying her pasta necklace! We attempted to finish the paper mache pigs but still a work in progress.

Ahhhhh! Vitamins are all here and I'm getting confused as to the dosage! My DS2 is 9 and not keen on swallowing tablets so have bought him the vegepa chewables. I'm sure Robin said to double dose for the first 2 months but that is 12 tablets a day and an astronomical bill plus it also works out to be 1344 mg of epa which seems high?
I'm wondering whether to try to get him to swallow the epa 70's which at a doubled rate would mean 2 capsules and 1120mg of epa per day.
Can anyone advise please
Thank you muchly x

I have only ever given ds 2 vegepa chewables per day, right from the start.
(Isnt double dose 4?)
He has a nasty chest infection ATM :( so is now on antibiotics, as am I. Gp thinks I have a secondary infection from flu :(
Feel dreadful.

It's his parents evening tomorrow at 5 so will let you know how we get on...assuming I can get up all the stairs!
Mum got sent to hospital again today query blood clot on her Lung but the tests were clear, thank goodness.
Am very, very very fed up with all this illness now.
Just one week without anyone being ill or in hospital or at hospital appts would be really nice :(
Sorry, feeling a bit sorry for myself today.

Itwillbebetter you need 4 chewables a day for the first 3 months. Thereafter 2 a day ( although ds has 3 as I like to keep the packets neat )
Badvoc :( surely brighter times on their way for you soon

I can't stop my dcs eating chewables - they are getting through loads a day and DS calls them sweeties... I have started hiding them and then 'forgetting' about them. Shoppingbags - I LOVE that you need to keep the packets neat

Badvoc - sorry to hear that everyone is under the weather and that your Mum has been back to hospital. I'm not surprised you are fed up. How are you feeling? Are you on the mend?

We've had a fairly awful day which has been so draining. DS is tired and waking up too early, plus coping with new pre-school. When over tired he seems to become more hyper. Anyone have any experience of this and what to do? Not awful, just on a short fuse, loud outbursts, bouncing around, being clumsy and breaking / hurting things or himself and then crying... He has always sucked his fingers quite a lot but today he has sucked his fingers constantly - or the shopping trolley, or a piece of jigsaw or his top. We're off to see Robin tom which I'm looking forward to.

Can I ask whether anyone else feels like this? Most of the time I'm quite chipper and feeling happy with our lives and how things are going, but I get completely scuppered when I have a bad day with DS - it seems to overwhelm me and I seem to over worry and react to it. Does this happen to anyone else?

On a happier note, DD's talking is coming along, we seem to be developing our own language between us!

Hi all, it's been a hectic couple of weeks.

Dd's birthday and party -which required a last minute change of venue after a well known pizza chain cancelled on us a week before! What a nightmare. I was soooo angry and upset.

Ds has gone to Italy with school, so have had meetings with school to go through all his meds, only to be told by his Neurologist on Thursday that we had the wrong emergency drug for him! This after having to get a letter from the GP for said drug so ds could fly with it (as it is a controlled drug). What a palaver! Then snow affecting Gatwick yesterday when they left.

Whilst ds is away we are having his room redecorated and new floor put down. So we have the contents of the whole of his room strewn around the house - even in the shower room! It is looking good so far, so, hopefully, will be worth it, and finished in time!

Prince how fantastic that you have had feedback from someone independent.

Badvoc I hope you are all feeling much better soon. Your poor mum has been through the mill recently! Any news on your dad?

itwillbebetter getting all the supplement doses right did seem to be confusing at first. Ds is now on the high strength Vegepa (they contain no evening primrose oil, which is something he has to avoid in case it affects his epilepsy meds). He only takes one tablet per day - they are more expensive, so work out the same price as the standard tablets.

Ruggles definitely still up and down for us all here. I'm expecting ds to be foul on his return this weekend - from exhaustion, being back home and from (hopefully) having to restrain himself from exploding whilst away. I have say though tha the lows are rarely as low as they were previously. Also, now ds' exams are over I do struggle a bit with keeping the momentum of TH up! It's been a tough 13 months of slog.

Shopping I am laughing at keeping the tablet strips tidy.

Yes! When DS has a bad day it is just a bad day. Annoying but deal-able with.

When DD has a bad day I worry that she will lose whatever progress she has made and we will be back to square one.

Is that what you mean or have I got that wrong?

DS's bad days are actually worse - he gets hyper and difficult to control. Exercise helps.

DD withdraws and gets quiet.

It will no doubt be pre school and dealing with that. When that becomes normal he will calm down again?

Good luck tomorrow - let us know how you get on.

Thanks Ladies - I think I just worry about it all and lose my sense of proportion - whether DS will lose some progress he has made, whether we are getting there or not etc. i am normally our domestic cheerleader / Captain Sensible, so it is odd and I suppose disconcerting for me to feel so dispondant (sp) over a bad day. Daft - agree that our bad days are much, much better than they were. I suppose all of this is a strain and sometimes we get worn out.

I am so impressed with the trip Daft - that is seriously impressive!

Prince - think you are right, should get some exercise in every afternoon.

I think the further down the road you get with TH the less you will worry Ruggles. I have gone from being full of anxiety all the time ( felt like I had a knot of fear in my chest all the time) to being pretty relaxed about ds. A year or so ago I could only see the worst. I watched a programme about aspergers and there was a little boy whose only friend was his little sister. I howled and was convinced this would be ds. A year later and I have no worries about his social skills whatsoever, everything at school is ticking along nicely and the knot has gone :)