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[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.

Just done 5 hours digging soil and laying turf with DH and just having a break and will go back out there. It looks lovely but we are up against it time wise. DS is being good at staying off it.

@ExistingonCoffee - It is always so hard reading these reports, that detail in black and white just how complex DC’s difficulties are - you just want to lie on the kitchen floor and cry; but you have to act like nothing is the matter in front of DC, because you don’t want to upset them!

I don’t find it ever gets any easier, and recently I’ve been reading depressing reports on DGD!

@BlueandWhitePorcelain I hope DGD’s report helps to secure more support for her. Acting like nothing has happened is so true. Unless you look smiley, DS1 thinks you are sad or angry. It is exhausting.

@drspouse we have a run of cabinets in the kitchen diner dedicated to a medical area. It has 2 sets of 2 larder cupboards with shelves and drawers in separated by worktop with drawers underneath. All the cupboards/drawers have locks on.

@ExistingonCoffee reports are awful reading. Can’t stand them. It hurts when things go backwards. All the love and intervention in the world to try to move things forward and bam! Give DS1 his version of an extra hug and ask DH to give you one. You are a dedicated, loving mother and advocate. Reading the facts of one’s reality is brutal.

I had a similar moment reading through ds’s EHC before my booked call with the LA. The “age” equivalent stuff is very accurate in our case and also leaves me hollow. Ds had a seizure this evening. He fell and missed hurting his eye on a doorstop by luck alone. I’m so tired. However hard I try there’s something I miss. He looks so pale and ill sleeping it off. Life is shit sometimes.
one of my sibling is out out with her son who is much the same age as mine. They keep texting me happy silly photos and I’ve been responding as though alls fine here, because… well mostly because I don’t know what to say really.

The call with the LA caseworker went ok. We are having an early review, she says end of April, beginning of May probably. She did mention more support in college, or a different setting (??) or perhaps transferring to adult stuff rather than education. Bottom line is ds wants college though so I don’t really think I have much choice.

@ZairWazAnOldLady I'm sorry about the seizures. So worrying for you.

It's all depressing, isn't it. We don't really get 'age equivalents'. I don't even know where DD1 would sit. Today has been hard. DD3 doesn't cope well with her birthday, and DD1 doesn't cope well with other people having birthdays.

Happy birthday dd3 and happy new sibling day dd1. A big day for both of them. Does dd1 remember dd3 being born?

I’ve been resisting trying sodium valproate for ds because it made dd3 quite angry but I’m not sure big TC seizures so often are safe or sensible and I guess it might work??? I don’t really feel confident deciding any of this stuff. What do I know? Ds isn’t himself. It’s made worse by college being SO unpredictable and stressful but he isn’t ok anyway. He can’t cope with catching very minor colds and he does catch them every other week. I’ve no idea what to do.

Thank you @ZairWazAnOldLady . I don't think she remembers! She was under 3½, so quite little.

Could you try the Sodium Valproate but have a hard line stop criteria, with a back up already identified to switch on to? Then it would be less panic stations if it didn't work. The current situation sounds really unpredictable and stressful. You have no idea what to do because there isn't a manual for this stuff. Nobody would know what to do. You're enough and you're doing a brilliant job.

Ds woke at 5 full of beans, clear headed and loving. I was too tired to really take advantage of the morning ment but post seizure mornings are very precious on the whole. I feel “this is what he would be like without the epilepsy”, but even the ASD or whatever bit it is that hides him from us is reduced dramatically. It’s like cleaning your windows and everything is brighter and crisper and beautiful. Silver linings.

@ZairWazAnOldLady I second trying sodium valproate. It’s a broad spectrum AED. It’s the best drug for DD1 along with clobazam. The difference between 50 seizures by lunchtime and 5 - 6 a day on average. IMO, clobazam increases her aggression more; but then pre, during and post seizures all cause aggression anyway. It’s just annoying we have to sign all these forms, because she’s a woman of childbearing age! She doesn’t have the mental capacity to understand sex, pregnancy, childbirth never mind a baby!

Drop attacks are the worst, but tonic clonics are the second worse ime - DD1 often cries with pain because her muscles are stiff (we think). She can’t describe or localise pain.

My DS gets a horrible headache after a tonic clonic - paracetamol eases it but he still complains of it. So that's a possible cause of pain @BlueandWhitePorcelain
Sodium valproate worked for DS and even though he only has one tonic clonic a week or so those are the dangerous ones according to his paediatrician. However he doesn't have drop seizures so I don't know if those are more dangerous.

@Lougle I’m sorry yesterday was tough.

@ZairWazAnOldLady I hope you can get better seizure control. You can only do what you think is right based on the information you have at the time. No-one can ask for more. Lougle’s suggestion of trying it with a plan in place for when to stop and the next steps is a good idea. DS1 tried sodium valproate as a mood stabiliser. It didn’t suit him but some find it helps their mood. Ensure all the necessary information is circulated prior to the review meeting.

Hope you can find help with the seizures @ZairWazAnOldLady

DH and I did a further 3.5 hours in the garden digging, clearing and laying turf, day 5 and both completely worn out and DH is starting to get grumpy as tired. Hoping we don't have issues with the bin men - they did not take a neighbours green bin as he put wood in it and they poured all green bin out. I hope we don't have that as I also cleared the chickens coop out and I don't need that. I did collect leaves from garden to put on top, hoping they only have a quick look. Both bins are incredibly heavy though. I didn't realise how big a job it was. I did it before at our old house but garden was tiny. DS was 2 or so and watching me laughing a lot as I was muddy doing it in the rain.

We have 8 square metres left to do. In theory its supposed to all be down in 24/48 hours but will be a bit over that as arrived 9.30am on Friday (shipping hours were to 6pm so starting 48 hours from then). Will finish tomorrow morning with DH. I hope it stays. DS is being good and sticking to paths. Found a couple of batteries he had buried today. He's been taking daily baths whilst we are gardening. DD back tomorrow afternoon from second rowing camp and then back to Oxford on 19th.

@ExistingonCoffee Ensure all the necessary information is circulated prior to the review meeting. we don’t have any current reports etc all are 2020/2021 when we did our last big push. On the whole no one attends except me and someone from college. I’m not really sure what is supposed to happen at the meeting but it tends to be read the EHC aloud and type in anyone’s thoughts then they decide to keep it as is (except they don’t actually do what it says).

@ZairWazAnOldLady before the meeting, updated advice and information needs to be circulated. That isn’t an optional part of the process. It is covered by the Regs. The advice and information won’t be as detailed as the report for the EHCNA (or in your DS’s case the statutory assessment for SSEN) and unless time is allocated for preparation for the AR, it may be even more limited but it should be something. The information should cover needs, recommendations for ongoing provision (including the strategies and approaches that work and what doesn’t work so that it’s clear what kind of provisions continue to be required), and outcomes. As well as including progress, they should link progress to the nature of the provision. You should request advice and information from professionals is sought. This is important because amendments are based on evidence.

Make sure anyone who needs to attend is invited.

Then, once you have all the information, in preparation for the meeting, you can go through the evidence and current EHCP. This will enable you to note what amendments need proposing and reference evidence to support the amendments. You can use this as the basis of discussions during the meeting.

But there isn’t any updated advice and information. There’s the LD epilepsy nurse who could say what’s needed from that point of view and we had a needs assessment a year ago for direct payments but we don’t have salt or EP or even a school report. Everyone is on holiday so college etc are closed.

The advice and information is sought as part of the review process. It doesn’t need to already exist.

"I’m not really sure what is supposed to happen at the meeting but it tends to be read the EHC aloud and type in anyone’s thoughts then they decide to keep it as is (except they don’t actually do what it says)." 🤣🤣🤣

I shouldn't laugh, but you've just succinctly summarised about 12 of DD1's 16 ARs. The last few years have been a bit more involved, but until she got tricky it was exactly as you describe.

I'm finding DD1's care a bit difficult. I feel like we need to arrange something to 'do' to fill the time. DD1 seems to reach a certain point then she asks for the session to finish so she can go to bed. DD1's psychologist has said that we need to have a far more 'natural' approach to her care. So if a carer comes and she doesn't want to do anything, no problem - they can use their phone or read a book. If she gets tired part way through, the same. But they are there for her for the full time. She said it can't be all exciting stuff because we need to get DD1 used to the idea that they do ordinary life with her, so that when she transitions to supported living, she's used to people being around for her even if she's not wanting to spend time with them.

When do you imagine she would be in supported living? I find people often try to push development by saying a child (or in our case young adult now) needs to do X Y or Z because they will need to do A B or C in the future. My opinion is that try growth “outgrows” a stage it’s not pushed out of it. What are you aiming for and when, and is dd aiming for the same?

@Lougle DS1’s carers run like the psychologist is suggesting. DS1 always needs carers to be ‘on’ if he is awake, but if he is asleep, as long as they are in the same room (if DD1 wouldn’t need someone in the room, they wouldn’t have to be) they do things like paperwork, training, restocking and tidying or are free to scroll on their phone, read, play with Lego, one studies for an OU course while on an overnight shift… This isn’t necessarily with the aim of supported living in mind. It is just how normal life is.

Sought by me (if so what do I do) or them (if so who does it and from whom)?

Pharmacist refused to dispense one of ds’s pills last week. After much back and forth it turns out to be a computer problem (I would guess user but it matters not) and they have muddled together a part of our prescription for tomorrow. It’s more than an hour to queue and I’ve done it twice plus multiple calls etc to the GP. If we don’t get it tomorrow I’m going to have to do one of those ghastly phone arounds because we only have a morning dose left. I can’t see me getting anything EHC related done till Tuesday at the earliest.

Sorry you are having prescription problems. It won’t solve the here and now but, going forward, is there a pharmacy near you that delivers? Or would an online pharmacy who delivers work for the medication DS is on?

The college is responsible for ensuring all the necessary people are invited and advice and information is sought, but prod them into action mentioning anyone in particular you think should be there/contribute and contact the LA if it doesn’t happen. If you have direct contact details for those you think need to attend/contribute, contact them directly yourself too.

Honestly I think they need an Ed psych assessment. I can’t see how that would happen in time. If I was going to be really thorough I’d want salt and a proper care plan by the LDEnutse (she’s offered this) and maybe some assessment by the reaching for independence team. They won’t do any of that though