The Goose and Carrot July Edition

[Lougle]

All welcome, and everything disappears after 90 days.

You can probably find a lot of things that haven’t been researched within the last 6 years.

True enough! But I tend not to trust single studies unless they are large RCTs, or unless it's something that is really new in the literature and there's been no time for anyone to systematically review the literature. And I can't find anything since 2020 that is either of those.
So for example some of the interventions for ADHD (medication) are quite old e.g. the stimulants, and I'd expect a systematic review to help me decide if they are worth it, others are newer and there may only be one or two RCTs. Exercise and ADHD has I think a few older studies and a few newer ones and there are at least 5 systematic reviews in the last 20 years:

https://scholar.google.com/scholar?hl=en&as_sdt=0%2C5&as_ylo=2000&q=exercise+adhd+systematic+review&btnG=

For an intervention that has good evidence, I'd expect at least that many, if it doesn't have any, I begin to suspect either that it's only popular because parents and/or therapists and/or children like it, or it doesn't actually work and the only papers published are those on how fun it is, not on whether it works.

@drspouse and @inthequietofdawn what therapy are you talking about?

@Wellzizizbetter support, therapies and otherwise, for difficulties with crossing the midline.

For my DS1, that support comes from a NHS specialist consultant neurologist, physio, OT, QTVI and QHS. It isn’t about it being popular or fun (DS1 thinks it is quite the opposite). None of the professionals involved with DS1 would be swayed by what parents and DC think is fun or by popular opinion. It works for DS1. For example, he can now touch the opposite elbow. Something he couldn’t do for a long time.

This isn't a RCT, but it is interesting, nonetheless https://www.mdpi.com/2073-8994/14/6/1259

This is also an interesting read with references (but not a RCT or systematic review) chrome-extension://efaidnbmnnnibpcajpcglclefindmkaj/www.otmastery.com/material.php?id=2394

I'm afraid from my science background those would count as "low standard of evidence". The one from Uzbekistan is interesting but small number of children, much younger than my DS, and relies on a book from 1971 as "evidence" that not crossing the midline is a problem.
Not convinced, sorry!

PS I am aware I'm a total nightmare.

The cleaning one body part over and over can be contamination ocd as the mind tricks into thinking it hasn't been cleaned. Don't think it is that for these cases but worth bearing in mind if they have ocd symptoms more generally. You would notice very high anxiety in that case.

Hope sorting things for your Mum is not too overwhelming @drspouse I can understand wanting research, I always did for cancer though for my DS I would try anything and see if it worked.

Cleaned DSs bathroom today, which took me 1.5 hours as needed to do all the walls, floor as well as usual stuff - he was outside in the garden and bathroom faces garden and as I was cleaning his sink a face appeared at the window. It was like seeing the Incredible Hulk, long haired version. He just stayed there then left. DH painted the kitchen ceiling and is currently watering the plants. We now have all the house cleaned and garden done. Tomorrow we are getting bread and cakes from the bakers we heard about on vineyard tour (DS loves that) and then the guy who does shed roof replacement is coming to look to see if can do another roof. Planning for the new shed should be last week of August.

@Wellzizizbetter how has your long day gone? I hope DS coped.

DD1 tried out her payment band today. She was very pleased. She proudly told me that she had only spent £10 of her £20 budget.

DD2 has her birthday next week. She's always liked to keep her actual birthday very low key. There has been an awkward discussion about whether she needs to see my DMIL (living here after 20 years abroad) on her birthday. She wants to see my parents because she always does, but doesn't want to see DMIL on her actual birthday. We've had chats about how she didn't have the opportunity to be a grandmother, but DD2 says she had a choice and she made it 18 years too late. It's not easy for DH to hear.

DS and I sewed on another Scout badge today, he's always asking to sew on his badges and he's getting quite independent about it. He pays such close attention and his stitches are pretty small and neat, though I still have to pay close attention and help reposition it.

IMO, DD1 shows no signs of OCD and certainly not contamination OCD. We certainly have experience of DD2 with that. DD1 is quite the opposite - very slap dash about hygiene. DD2 has refused to see her for a year! The only good thing is DD1 thinks she’s mad, and doesn’t want to see her anyway.

As for RCT, DD1’s genetic metabolic disorder is so rare, there’s the case study of the first family diagnosed with it; then three other case studies of children with it and epilepsy worldwide. One died aged two in status in England, before she could have genetic testing; there’s a Chinese girl and a Korean boy. That’s it. Researchers can write about what testing of the urine shows, and the symptoms people have exhibited; but other than that, nobody knows anything much.

There’s no specialist on it in the UK; and only one other family we know of, and they don’t have epilepsy. Two neurological hospitals disagree as to whether it causes epilepsy or not; and what treatment there is, if any?

It’s not at all helpful to know what is wrong with DC, when nobody knows anything much about it, and they disagree about what they think.

@LathkillDale We've had a similar experience. Whenever we see a professional, they suck their teeth and say "Weellllll, I'm not sure I'd call it that. I'd call it this...." That's nice for you. What difference does it make to DD1?

DH got the pastries and bread from the bakers I discovered and they were lovely.

Then we have just had the guy round to look at a shed roof replacement and assess the current shed. Good thing is DH told DS this was happening and could he leave the shed and he did so looks hopeful for him cooperating with work on old shed. DH explained to him the current shed roof is dangerous with asbestos and needs replacing.

The guy said the current shed is in good structural condition but due to the way its built there are only two roofing options. One is like for like what we have now minus asbestos - so corrugated fibre-cement sheds with clear polycarbonate sheets to allow in light. Second option is same but metal sheets with clear polycarbonate sheets. He can also put guttering in with or without us getting a water butt. The metal is slightly more expensive, probably both last a similar length as its the polycarbonate that will go first, similar strength, metal slightly warmer but a lighter colour would help. The cement one is safer on the not needing permission as its like for like but its pretty safe with either option. We can't actually see the roof much as it starts at 1.8 metres and is at back of garden. DS did damage the current guttering but not sure why, it would either have been he took it off due to dripping in old water butt which we got rid of and a new one you can get with a tap so can get water out of it and would stop ground getting too wet in winter. Or could be as he was doing ninja warrior on it. I did see screwdrivers around there. The shed we will paint cream with a coloured door. They can coordinate with asbestos company and do everything in day and will send quotes for both options. Veering towards repairing old shed and part cement as its like for like as it'll probably flag on sale as we applied for planning for new shed and also asbestos has to be reported. I don't think it'll make much difference to appearance as its only 9.5 foot across by 6 foot deep and half roof with be clear. Think might do water butt but will have a look. Might need to order one. If its ninja warrior nothing much we can do other than say to DS. Water butt I think if we are careful may not hear dripping sound.

That sounds really positive @Tulipandmagnolia .

DD3 was feeling very unwell last night. I think she must have had heat exhaustion because she was out with her new friend in the sun. She wore sunscreen but didn't realise you can still get ill. She was feeling really poorly and then suddenly said 'I'm going to puke...' She went to sleep afterwards and seems to be feeling better but tired this morning.

DD2 has decided that we can invite DMIL to the garden centre on her birthday and see Nanny and Grandad there too. Very mature of her.

DD1 had her last appointment with outgoing psychiatrist today. LD nurse sat in to support. I had to point out twice that DD1 was unaware of the contents of communications surrounding her care, as the psych tried to discuss it in front of her. Her ADHD meds were increased, although quite a jump so we'll have to monitor any side effects. We had a bit of confusion over an unneeded prescription for the lower dose but the local pharmacy sorted it in the end.

@Lougle is that goodbye to the psychiatrist that’s not a good fit for DD1?

We have been indoors a lot hiding from the heat and catching up with all the neglected jobs. Not a traditional break from work for DH but I keep catching him laughing and happy which is wonderful.

Yes a tiring day and more today and tomorrow. On top of the scheduled super busy dr/pharmacy have not dispensed ds’s meds. Luckily I have some left of smaller doses that can cobble together a dose but historically this is not a good idea with my super sensitive one. I’m trying not to get cross or cry because it won’t help. Ds notices and reacts to my distress even if I think he can’t possibly notice. I think many who are less verbal are more in tune.

@Lougle very mature of DD2. A relief DD3 is feeling better.

@Wellzizizbetter sorry you are having a tiring day. Plastering on a smile to appear overtly happy is exhausting.

@TheGoodCat I’m glad DH’s break is going well, even if it is an unconventional break. I am looking forward to the cooler temperatures. I know you and DH will be too.

I had an emotionally draining meeting about DS1 this afternoon. In response I have eaten far too much chocolate this evening.

@Wellzizizbetter poor show from the GP/pharmacy. Hope meds come through sharpish.

@inthequietofdawn it’s a bit much in the prolonged heat for everyone isn’t it. I now fancy chocolate. I like the salty slabs. Even the people that thrive in the heat are looking knackered (eyes on you postman). DM vomited last night from heat overwhelm.

Thanks @Lougle Sorry DD3 was sick in heat but great she was out with a friend.

Great to do jobs together @TheGoodCat and glad your DH is happy. I am wearing mine out but he's happy and proud of what we are doing though does have a slightly annoying habit of telling others he did everything by himself.

Did 3 hours in the garden with DH clearing leaves, planting new plants and cleaning outside of the house.

@inthequietofdawn I hope the chocolate hit the spot. I'm with @TheGoodCat - salty chocolate pretzels are so nice. Haven't had them for years. I wonder if these professionals realise that the meeting they move on from stays with us?

@Wellzizizbetter sorry the stress continues. You do so well to hide it from DS. I don't always manage to do that.

I felt quite cross today that DD1 ended up apologising to the psychiatrist for the fact that she was getting a new one. She said she felt bad that she had made the psychiatrist have a bad day and feel sad.

I also got quite frustrated that the psych expected me to take her FP10 that was not needed to my pharmacy to have them destroy it because she didn't have a confidential waste bin. That's not her fault, but then when the pharmacy said that the prescription was for a controlled drug so I had to take it back to the prescriber, I held my hand up and said no, I'd just been there and they specifically told me to take it there and that they would know what to do with it. They were so perplexed but because they know me really well, the store manager came over and said "What if I just hold it up in front of you, rip it up, and then throw it in the confidential waste?" I shrugged and said they could do what they liked with it as long as I was rid of it.

The number of little jobs one is expected to do always boggles my mind. On the whole surely the disabled persons needs come first and then the parents/daily support, so why is it that this end of the chain always has to accommodate and make a little effort for the good of the process?? The problem is I’m getting too old for this nonsense.

I should be clear things are actually better here it’s just I have builders in and lots and lots of physical work to do. Patio is up and all but 38 out of 41 slabs came up cleanly which is fantastic. Sadly a large branch has snapped in a fruit tree so that must be cut and dealt with (hours!).
I love the heat. I could obviously live it more with a swimming pool and less insects but I find it beautiful, all that dry grass and dust. If ds could tolerate it I’d wish for 28C year round.

I’m a defined seasons lover, everything seems to either be prolonged or abrupt changes and more of what it is meant to be at any given time of the year. I’m thinking of closing up the open fire before winter and putting an electric one in but then I worry in case we need an open fire. My family nickname is Bill (from the Last of Us) or Cam (Modern Family) a mix of prep and emotion.

We have one open fire and one wood burner and one of the reasons I’m knackered is moving 3 years of wood to make space for construction is just a lot. We are quite rural though and need alternative heating options for midwinter. I tell myself it’s better than a gym, and always think it would be excellent for ds if he helped…sadly he has other ideas.
Everything is messy here and it’s getting me down. Three out of four adult children’s stuff has come home from uni with them this year and the fourth will be back next week (another long drive and lots of carrying). It’s like living in a warehouse.

We're in chaos, too. The utility room is really a brick outhouse that has been split into outdoor and indoor sections. The council voided the property when the old tenant died and accidentally made it a habitable space by putting radiators/sink/worktop in when they shouldn't have (council policy is that they don't maintain outhouses). It has a concrete roof that developed a split.

The surveyor came out and reluctantly said that as they had made it habitable, they'd have to overboard the concrete roof to fix the split, so we had to clear the entire room of all the cupboards, etc., and move the big fridge freezer into the galley kitchen (only room to squeeze past if you suck your tummy in). Then the chaps came to do the work but the plasterer couldn't come back until 3 weeks later.

Then it all got confusing because the plasterer told me that we needed to paint it after a few days but the electrician told DH that they would be coming out to paint it. In the meantime, the company that did the work lost their contract with the council, and there's a new company taking over. I spent 30 minutes going around a circuitous loop of phone call redirection yesterday with no conclusion.

Meanwhile I've been scraping the brick walls because they were painted without prep by the old tenants and all the paint is flaking off because it was painted straight onto distemper. Sanding isn't viable because they're uneven. I'll use some Zinsser BIN on the walls to seal them, then the paint should stick.