The Goose and Carrot July Edition

[Lougle]

All welcome, and everything disappears after 90 days.

@LathkillDale thank you for this. I font know why but I assumed ds would wake up the next day feeling much better, because that really was how it was previously. It hasn’t been like that recently (this year) really though and that’s a big change that I don’t think I’d registered. If I reframe things as “this is a postictal week” perhaps things are more normal and less worrying. I will discuss with his epilepsy nurse and see if that sounds sensible to her.

OCD is ramping up again and we are hovering in doorways and at transition points. All a bit worrying but I got some sleep last night so things will be easier today.

I can’t thank you all enough for all your kind posts. It’s a bit lonely sometimes isn’t it?

No idea what the ghastly dizzyness was, but it seems to have gone so I can at least get on with my life. Honestly how inconvenient!

I am considering getting a zip wire (we live in the countryside with a ratty little back field on a slope) for ds. I have no idea how much it would cost but am pretty sure he would bound uphill to zip down. Is that madness? He used to have a huge swing set but I think slides/zips are more attractive now and he’s too big for the slide at the park. Has anyone had any chunky heavy duty play equipment built? I’d rather build once and have it for a long time.

Thanks. We have never had any play equipment built; but whenever we are looking after DGC, we take her out in the afternoon to a park with a zip wire. She can happily spend two hours, swinging down the zip line, astride DGS (so they get twice as many goes) and then running back to the start with it. It wears her out nicely! (ADHD combined type - very hyperactive)

She’s happy to come home and do table top activities nicely out of exhaustion, without having a meltdown at dinner time!

I meant DGD - DH called me to breakfast, as he gets breakfast in our house and I pressed post in a rush.

We have always found how epilepsy presents, changes every so often. IIRC, we asked her neurologists why this was in her teens. They said, it was because her brain was changing, what with the hormonal changes in puberty and the natural cognitive reorganisation in the teens and twenties. Afaik, many people feel exhausted after a seizure; even for weeks.

We find with DD1, it changes her mood completely - if she was happy before, she comes out of it, in an aggressive mood or vice versa!

Thanks @inthequietofdawn for the birthday wishes.

@Wellzizizbetter My DS loves ziplines, or at least he used to, and nothing persuades me he still wouldn't. Personally even if we had the space to put on in garden I wouldn't due to risk of an accident and DS not communicating /likely to refuse hospital / being classed as an vulnerable adult so we could be held responsible for an accident. I think the risk of a serious accident is low if set up properly but the risks would be too great of the potential consequences for us but your DS is more capable and co-operative than mine. Go Ape have ziplines if there's one of them by you though they are very tame compared to what my DS would go on. I also would not trust my DS not to "improve" the zipline by making it higher etc. I think its a case by case thing though I'ld be inclined to run the idea past someone official.

DS had an absence yesterday, about 5 mins of confusion. That's the first since the end of July. We realised later he'd spat out one of his lamotrigine tablets in the morning and told us but we didn't realise neither of us had given him a replacement.

@Wellzizizbetter i love your big thinking, Ddad set up an obstacle course from tree trunk rounds and beams when DD was having trouble with balance, that might be an easier thing while you figure out the zip wire.

@Tulipandmagnolia glad your DH had a happy birthday! I know what you mean about caution in case medical treatment is needed following an accident, it’s one of my biggest worries.

We had a dreadful walk yesterday. Got stuck as DD’s leg was in pain.

@TheGoodCat I think Lougle’s suggestion of a wheelchair is a good idea. There for when it is needed.

@Wellzizizbetter We have an adult exercise/climbing frame in the garden. Used daily by DS2&3. A big hit with DS2’s friends too. They would love a zip wire. Alas, we don’t have space for it. For the best. Someone bought DS2 a slackline and I try to avoid putting that up. We have an indoor sensory swing with several different types of swings you can attach. These are used daily be DS1&3. And an outdoor nest swing. Also used daily, but not as loved as the indoor swings.

@TheGoodCat I'm sorry the walk was awful - I found it quite frightening when DD1 was younger if we got stuck. We once got stuck 150 yards from home and I just couldn't move her. In the end DM came and picked us up. If DD won't find a wheelchair useful, would a Ta-Da Chair Series 2 PRO - Walking Stick with Seat be helpful? You could unfold it every so often so she could take a break, then move on when she's ready. It's relatively discreet so it wouldn't be obvious that she's getting support.

@Wellzizizbetter the seizures must be so unsettling. I love the zip wire idea. Mind you, I'd love a hammock, and the time to sit it in!

@drspouse sorry to hear that DS also had a seizure.

DD2 is now enrolled in college. It took 2 hours but they have put all the support in place and they have accepted that the first LSA isn't going to work for DD2, although apparently she really liked working with her.

Sleep clinic called. There was a bit of confusion because I couldn't take the call, then when I phoned back I was told she had an appointment in October. However, it turned out that the real reason for the call was that they had a cancellation available for tomorrow. So that's booked in.

DH, DD2 & DD3 had a great time at kayaking yesterday. DD1 was in a pretty awful state, so it was the right thing for me to stay home. However, she seems a bit better today.

@Lougle thank you that might be the thing she needs, currently using walls etc.

It’s the getting going again once pain has started. I need a bit more evidence and observation as there hasn’t been a huge amount of regular walking for a long enough period to conclude that it’s not just building strength needed (wishful thinking and in denial about wheelchair need probably)

Could you try having her take analgesics prior to exercise? It might give her a background support.

@Lougle Why not keep a diary of when the pain strikes and what DD is doing at the time?

Our GP practice is big on diaries!

@Lougle Gosh, you didn’t wait long for an appointment with the sleep clinic at all. I’m glad enrolment went OK.

@drspouse I’m sorry DS had a seizure.

@LathkillDale I am a big fan of diaries. I track all sorts of things for DSs.

@LathkillDale yes, I'm doing so. Unfortunately this is more about her mental health. Fortunately she messages a lot so I have logs.

@inthequietofdawn I was surprised myself! We only visited the GP 2 weeks ago. I just hope it's helpful.

@Lougle - even with mental health, diaries can still show patterns.

When DD2 was at university and had about 6 suicide attempts in her first year, the University, Mental Health and the GP had quite a few meetings about her. None of them worked out, all the attempts occurred in the week before her period. When I pointed it out to her GP, because I had asked to see her with DD2 (as I was fed up of her saying, she didn’t understand a word they said), the GP said she was on a combined pill, that was particularly bad for MH and so she put DD2 on another one.

I'm glad you identified that @LathkillDale . I think it's tricky with DD1 because her melatonin has increased (could that be a cause of vivid dreams?), her concerta has gone up (can cause anxiety), and her quetiapine has gone up (which could be knocking off the concerta). When her anxiety is high, she focuses on her bad thoughts and they become more real and scary, so she becomes more anxious... Viscious circle. Then the debate comes about whether the voices she hears are audible voices (she says yes) or if she's just experiencing her own thoughts vividly. Does she truly believe that there are people watching her (she says yes) or is she just scared of the thought of it? Then we have a new psychiatrist taking over, who will have to get to know DD1 so he can work out what is authentic, what is hyperbole, what the function of the hyperbole is ("will you damned well believe me when I tell you I'm terrified, instead of telling me I'm ok...."), etc., before he can make sensible decisions.

Plus, the psychologist is here this week but then off for 3 weeks, which is bad timing.

@Lougle - yes, Concerta sent DD2’s exams nerves through the roof! She collapsed in the corridor several times, before she even got into the exam room and ended up not taking the exam! They gave her quetiapine, but she was so zonked out on it, she nearly got killed crossing the road. So, she refused to take it again. Then, they gave her propanol for the exam nerves, which controlled the physical symptoms and after that, she could at least take the exams.

Can DD tell you, who the voice or voices are? Is there a man or a woman? For instance, if she says it’s a man, then you know she’s hearing an actual voice as opposed to her own thoughts, as self talk? I know the voices are still part of the mind; but they are perceived as real. (Schizophrenia runs in my family due to the genetic metabolic disease, we carry. My brother had an acute episode of paranoid schizophrenia and he heard voices, criticising him. He never thought, he was hearing his own thoughts at the time)

@Lougle both my boys tried melatonin. Ds1 for less than a week. His dreams on it terrified him. He couldn’t separate dream from reality. It was actually a goose who told me she had tried it and had horrid dreams that made me understand what was going on. Ds2 used it for a few months. He said it helped at the beginning but I think had a milder vivid dream response and eventually we just gave up. Weirdly it was extremely effective in getting ds1 to understand going to bed and lying down and going to sleep, but beyond that ghastly. Ds has a muddle of echolalia, pretend games, and muddled thinking that I sometimes worry is “voices”, but I think unpacking that is difficult or even impossible. I tend to focus on “what makes it better” rather than “what it is”. The things that help are exercise, diet, not being constipated, routine night/day, activities outside the house, no arguments. All those things help everyone but for ds it all needs to be very heavily adhered to. I find it difficult to do.

Ds ate strawberry kefir today. Aren’t we just ridiculously gifted at this eating nonsense! He’s still looking hung over, and slightly uncoordinated. I will phone the Dr tomorrow and see if we can have the valproate yet. They should have had the letter last week, but there’s all the “we won’t have unprotected sex” paperwork to get through.

@Lougle any change in meds has a significant effect on DD even dosage. It takes c6 months to see if the benefits outweigh the side effects. The withdrawal takes longer. I think highly sensory people have a hard time taking meds. Like outside stimulus/change but inside the body and brain.

@LathkillDale how is DGC getting on? Have you seen her? Is she smiling yet?

@Wellzizizbetter who doesn’t need a strawberry ice when feeling rough. Great new food to add especially for cooling off.

i will never get tired of celebrating food wins.

@Wellzizizbetter shut the barn door! I'm so impressed that you just nibble away (see what I did there? Puns never get old) at the edges of his food boundaries so patiently.

@LathkillDale she says they're like demons. She also quite neatly described the Grim Reaper in her dreams when she was talking to the new psychiatrist, but couldn't remember what the Grim Reaper was called, so said 'it was the one with the weapon, that tries to suck your sole, like in that song I used to like when I was young (Stay by Shakespeare's Sister). She can't really articulate well how she feels, but when he asked targeted questions, her eyes widened and she firmly said 'Yes!' to some questions, and said 'I don't think so' or 'No' to others.

It's similar to the pain stuff - I know she uses hyperbole, etc., which makes professionals think she's attention seeking. However, if they ask where it hurts and start pointing to areas, she says "Yes, yes, it really hurts, yes, yes..."as they go over the right side of her body. But if they get over to the left side of the body she says "Oh no, that doesn't hurt at all", 'Nope', 'Nah, I can move that one fine...'

@Wellzizizbetter DD1 has severe, drug resistant epilepsy; but sodium valproate is the most effective of the drugs for her. She went from fifty seizures a day to about six, when she went on it, along with clobazam and another drug. (Rufinamide is probably the next best after those two, because it reduced her drop attacks, relatively speaking)

I've heard of a lot of cases of vivid dreams on melatonin also.
Being on holiday is tiring. I foolishly said I'd do a small non urgent work task (if I don't do it I'll just have to do it when I get back) and also working on plans for my mother's funeral. Even picking up the iPad feels like too much effort!

@Wellzizizbetter hurrah. I love reading your food breakthroughs.

@Lougle any professional who thinks DD1 is attention seeking needs more training. They may not know what is wrong. There may be disagreements about the cause and way forward. But it is clear there is something.

DS1 has abdominal pain. I’m not sure what is wrong. He is shouting ‘DS1 stabbed’. He means he has been stabbed. (Just to confirm to any concerned reader, he has not been stabbed.) I’m just monitoring for now.

@inthequietofdawn stabbed is quite useful! Does he rub or point to an area of his abdomen?