Join us in the Goose and Carrot Pub thread.

[ExistingonCoffee]

A thread for all who have DC with SN. The thread is deleted and 90 days and doesn’t show in active. The fire is on and the bar is well stocked.

@ExistingonCoffee I would be surprised if you weren't exhausted with all the hard work you do both physically and mentally. I think this time of year doesn't help, the darkness and often dreary weather plus lots of viruses around. Might be worth getting bloods done though. We don't need the other rug DS has taken off somewhere, I was going to bin it as have a new one though its washable but I fear for our washing machine.

It might just be the change @Lougle - I think you get used to doing things a certain way. Hopefully will settle. Heard DS rush to the kitchen after we baked the second lot of cinnamon buns. I hope he will let us clean downstairs bathroom tomorrow, need to clean before the cleaner on Tuesday. 😂I hope he has nothing for the black bin either. Normally its remains of fruit and food packaging so can be recycled though I normally lose the will whilst cleaning his mud to sort it.

@Lougle as well as the new bounce, it could be the change of depth of each step if the old carpet was well worn.

@Squirrelsandhedgehogs where are you thinking of holidaying? I always enjoy hearing about holidays and the photographs you have posted from your previous holidays.

You are both right about it being sensible to get bloods checked. I have been putting it off.

I am not sure yet where we will go on holiday though am having fun researching options. I don't want to book until my passport is back and we can't really go for much longer than a week as DD will be looking after DS. She's given us a 10 day period so we have dates though she does have a habit of changing dates last minute after telling us fine to book. So its best to book last minute. I thought of the Azores again but there's a flight issue - Ryanair have stopped direct flights and BA only start them after her dates. Plus I wanted to go to a different island Flores and apparently there flights often get cancelled and its 3 flights this time of year when I looked it up. So that's out. I looked at Mexico but issues with crime and seaweed. Most of Europe we have been to or places like Iceland will be very cold. I quite fancy Sri Lanka but not sure we have enough time and flight prices keep going up. I have a plan for there though. I also looked at a Caribbean cruise but DH said no for that. Also looked at La Gomera but looks like nothing to do. Tenerife is also a cheap possible option but looks a bit Brits abroad and I love swimming, dolphins, turtles etc but DH is scared of the water. He says he wants an active holiday but is normally very lazy on holiday - he does love wildlife though just not going in water himself.

We have just been to a solicitor and discussed all this, as we are updating our wills, with regard to current tax law.

When I have the energy, I will try to summarise what our solicitor advised.

The daughter of another relative, has just been diagnosed with autism. I am trying to give them information on it, SEN, helpful books, DLA, etc. I don’t think they had any idea, until the school brought it up.

Ds has been up and very cuddly for hours. I am exhausted but I hope the mood change is meds finally settling. A techy ds is really very hard to bear and he tends to focus on me so it’s been a long few weeks. It’s half term here so we are praying it stops raining for a bit.
@Squirrelsandhedgehogs if you find the muddy rug blast it with a hose outside (or bang it with a tennis racket if dry) before the washing machine. I would keep it for a double layer in winter (and anyway would probably make an excellent basking in the sun rug if the sun ever returns). Ds longs to cruise but so far I have resisted. I think for me too trapped and organised and I went on several as a child so feel like I’ve “done that” (I realise this is ridiculous!). What sort of things do you both like doing?
@ExistingonCoffee hospital and worry will have really exhausted you. Can you build an extra bit of looking after yourself into your days? Honestly I’ve been in the same state for a month. I just can’t get back to waking up ready and every day is a bit too long. I think it’s just an unfortunate set of events here, but you have had so much on your plate. Snug up, and recoup where you can. We can’t have any geese failing now.
@Lougle are you sure he hasn’t double underlaid any of the steps (feel with your fingers) a change in height even very slight can make you slip on uniform step up or, more usually, down. I find no carpet less slippy but the fall harder.

Have any of you had a child on Sodium Valproate recently? Dd was on it briefly as a preschooler but it made her very angry and aggressive. It’s being suggested by ds’s team as the next option but I definitely couldn’t cope with ds if he was impacted the same way. He’s much much bigger than either dh or me and strong. I feel a bit bleak about it all.

@ZairWazAnOldLady - yes, DD1has been on sodium valproate for about 18 years. The consultant said it could affect her behaviour. I didn’t notice any effect in that regard. I think it makes her hair fall out more than usual. Her epilepsy is drug resistant; but sodium valproate is one of the two most effective drugs for her; the other being clobazam.

Sodium valproate, clobazam and Depo Provera injections (ie no menstrual cycle) make the difference between 50 seizures a day every day, or 5 on average! Although she can still have up to 90 in a cluster sometimes.

What really made her angry was Keppra!

We do notice she can be aggressive before, during and after seizures. Aggression is a sign a seizure is coming. She is bigger and stronger than me. Mainly, it’s verbal abuse from her. She’ll push me over, whereas she tends to punch DH in the stomach. Seizures can change her mood completely. If she’s really in a good mood before, she can suddenly be in a bad mood as she comes round, and vice versa!

@ZairWazAnOldLady our DS was on sodium valproate till he was about 6. It's been marked down as "didn't work" but he was on a new ADHD med which it clashed with so I keep wondering if it would work to try as an adjunct now. He's had two atypical confusions this week. Luckily both at home and not while trying to do anything big/difficult.
It didn't make any noticeable difference to his behaviour. He started it before he was diagnosed with ADHD and then added in short acting methylphenidate which helped and then they swapped that to long acting lisdexamphetamine which was when he had a long seizure.
I wasn't there - DH was dropping him at school - and as per paediatrician instructions he was staying by DS and calmly timing the seizure. School wrote this up as "not appearing to care". We discovered a whole load of write ups of us as uncaring parents in a SAR later. In one DH was shouting to the DCs BE CAREFUL OR YOU'LL DROP THE PIZZA as they walked home from the pizza van and a TA walking home saw this. FFS.

I always thought it was a firm rule with epilepsy, to make only one change at a time to medication/treatment - otherwise, if you make two changes, how do you know which did what, or did the interaction produce a new symptom? They have always told us clinical trials are done in one drug at a time, never two or three. They have no idea what effects polypharmacy has on the individual.

I’d say it was poor coordination to introduce a new ADHD drug and a new anti epileptic drug around the same time?

Why not try sodium valproate again? It’s a good broad spectrum AED. The most effective drug for Lennox Gastaut syndrome, along with clobazam.

The sodium valproate wasn't new - he'd been on it for 2 years at that point - and they went back to the methylphenidate when they changed the epilepsy drug. So it was only the change from sodium valproate at that point.

Is he still on methylphenidate? If not, try the sodium valproate again? It may have been a drug interaction?

He is still on methylphenidate and we think it was the lisdexamphetamine that clashes with the sodium valproate, not the methylphenidate.

@ZairWazAnOldLady DS1 previously tried sodium valproate, not for epilepsy as his seizures are non-epileptic, but as a mood stabiliser. It didn’t suit him and he stopped it.

We once took DS1 on a cruise. Never again. The cruise was lovely, other DC loved it, but managing DS1 on board and keeping everyone safe was challenging. We have only taken DS1 on holiday once in 7 years and that was only in the UK. Sometimes I think we are letting DS1 down not taking him, but then on the other hand, I think DS would prefer being at home.

We go on lots of holidays (well probably not by MN luvvie standards but it’s something we find has an amazing impact on ds’s development. I find most countries far far more welcoming to us as a family than the uk. It soothes the soul a little. If ds is not too stable we drive as he enjoys being in a bubble with us and it’s much cheaper. (Tesco club cards for the tunnel). Mine loves to swim though so any villas with a pool is a win. We travel with about a cubic meter of Lego and his favourite cereal, ketchup, etc. I used to map out all the hospitals en rout and choose the final resting place with that in mind. Lots of planning and endless hiccups but empowering.

@BlueandWhitePorcelain your dd sounds like my youngest though her seizures stopped as mysteriously as they started. Thank you for your post. It reset my thinking and calmed me. I think we won’t know about the valproate till we try and keppra was the drug that switched dds seizures off for good. Ds takes the similar but more expensive briviact which is so much better for side effects but isn’t working for us anymore. It’s all so hit and miss.

@drspouse teachers interpretations of who is a good parent and what love looks like can be as hit and miss as their understanding of anything else. I’m sorry you had that experience. It’s so hard anyway without the critique. I just correct people bluntly now. I’m sorry tired of doing all the work and listening to that sort of nonsense. Mostly I just fantasise about running away to live on the beach in peace (though let’s face it the heat and sand would probably be equally irritating).

We’ve had an interesting week, dd2 started on meds for adhd. Oh my this appears to be the game changer she’s had a really good week, focused on work, asking to do housework for pocket money, went out solo to meet an old friend it’s incredible!. I’m also a tad angry that if the school hadn’t been so so dismissive 2.5yrs ago we could have started them then. It’s given me hope that with all the other environmental & education adjustments we’d already made this gives her a real chance now in finding a path in this challenging world. Shes not shouted at me or got really dysregulated once in 8d just wow..

We go on lots of holidays too, I think the DCs enjoy them because it's what they're used to, a yearly routine. Plus the ADHD thing of enjoying novelty.
Just watching the Olympics, DD wants to be a ski jumper! Of course she does.

That's great your DS loves holidays @ZairWazAnOldLady DS used to love holidays and be so active on them - canoeing, trekking through rainforest, seeing wildlife, climbing hills etc and they were so good for him. I really hope one day he will do holidays again. We went to Australia, Costa Rica, Lapland, brown bears in Finland and lots of other European holidays with him. He did say at one point he fancied a cruise but he had also said before he fancied camping and we took him once (glamping as well) and he screamed at the insect in the bathroom then was where are the sockets for my ipad so that was the end of the camping dream. Was quite glad as I don't like camping. Not located the rug still but checked and the rug and anti-slip mat he removed are both washable. I think its just one corner of the rug that has mud on as he takes his shoes off in the shed (wish he would be as careful in the house). Our black bin is already full with a week and a half to go so I won't be throwing it out even if I find it. Plus the fact he's moved it I think means he wants to keep it (and maybe means he will wash it). I'll check condition but everything else he took in there was fine just a bit of mud on things I needed to clean. So may wash it and put 2 anti slip mats and both rugs in there - he might well do that himself.

Holidays DH and I both love wildlife, I love swimming and snorkelling and boat trips. DH enjoys boat trips but will only go in shallow water, he does swim. We have travelled quite a lot. He seems opposed to a cruise and I am not sure, I just was looking what was available. We would prefer direct flights though not 100% strict on that but need reliable flights. I loved Borneo with DD, that was perfect as the safaris there were river ones and hotel nearby.

rainingducks that is good news about the change the meds have made.

We only have short holidays as that is what the Dcs can cope with. We don't have a car so have to go to places that are accessible by train and where we can get around by public transport once there (none of us like sitting on the beach type holidays).
We also need access to a kitchen as trying to source food for Dd for more than overnight without one is a real headache.

To be honest I find going on holiday as a family absolutely exhausting.

@RainingDucks amazing news! It was ADHD meds that helped DD1 leave the house and engage with school after being trapped indoors because of the OCD. The OCD meds alone just weren't quite enough. I'm forever grateful that we were able to get private treatment because CAMHS would have come too late.

@NoHaudinMaWheest I'm with you about holidays. We haven't taken many and the thought of it is overwhelming. Even on my honeymoon, I was craving home by day 7. I'm just a home bird.

We're looking after a friend's dog. She's nice enough, but DD2 has been in tears because things are different. She really does rely on everything staying the same.

That’s brilliant @RainingDucks.

Holidays are just another thing where we split up rather than do things together. Either DH or I will go with DS2&3 (and sometimes DD2) and the other stays with DS1.

We also look at hospitals @ZairWazAnOldLady. Just aspect of the planning from a medical PoV.

@RainingDucks oh! Wonderful! You must be so so happy.

Looking back before diagnosis we were the people that took a suitcase full of safe food and ate out in Italian restaurants no matter what country we were in. How did I not know DD was autistic. I missed family holidays for a long time but I’m ok with it now. I don’t think I will be able to holiday with DH again but who knows!

I love a holiday but DH hadn’t been anywhere when we met due to a mix of low income & a mum who is also ND but never diagnosed. We go on sporty holidays always self cater plus take a bag of food. Skiing is our favourite as once through the first 24hrs it’s the same routine every day which for a family of sporty ND folk it’s ideal!. We save all year for it and the DDs love it. I’m loving listening to the snowboarding commentary it’s just so funny all the different terms. Plus I just really enjoy watching different sport on telle that’s not football or rugby.

DD2 before meds arrhh mmmhh nah don’t wanna get dressed blah…. 1hr after taken the adhd meds “im off to the skate park, no don’t need lift the exercise will do me good.bye .” this stuff is just transformative I’m trying very v.hard to be cool mum but inside I'm going omg is this the same child?! She wouldn’t leave the house normally half term week for fear of seeing her peers, would actively resist getting dressed before lunch time. I shall be on tender hooks hoping it goes ok but just seeing the growth in her confidence after one week is just miraculous. I’m so hoping this is missing piece that enables her to take her first GCSEs this year as she’s booked in to do two and I was seriously doubting my judgement two weeks ago that we’d made the wrong call that even with adjustments in place it wasn’t going to work.

That’s just such good news @RainingDucks Yay!

@RainingDucks i am thrilled for you! Wherever this leads you now know anything is possible.

@RainingDucks Hurrah!