The Goose and Carrot July Edition

[Lougle]

All welcome, and everything disappears after 90 days.

I'm glad you clarified that he is not, in fact, lying a pool of blood. I am suitably reassured.

@Lougle he doesn’t/can’t. He is curled up but isn’t pointing/rubbing/holding anywhere in particular and can’t/doesn’t respond to questions asking where.

Hope DS doesn’t get worse and the pain ease @inthequietofdawn
Good the kayaking was a success @Lougle sorry to hear DD1 is struggling..
Epilepsy sounds like such a hard thing to manage for several of the goslings. I hope rest during the break from education helps.

Well I’m trying to work out what the LA game are playing now. They have sent DDs virtually unchanged draft EHCP (AR in June not finalised yet) to two different post16 colleges. One which doesn’t offer anything DD she wants to do as “their choice” and one to “parent” choice but they have sent it during THE busiest week of the year for our choice as it’s enrolment week for this year . We have not had a chance to talk to either as they are too busy dealing with new term starters. The LA given very short deadline & there’s there’s the bank holiday in the middle. I’m assuming they are expecting both to reject unless the draft EHCP is drastically changed to suit the provision. A close friend is going through the same and asked for changes to be made prior to consult of her YP EHCP but the LA refused said they would make them afterwards. The college have offered to speak to me next week so I can offer my pov. The timeline feels utterly ridiculous hence my pondering of wtf are the LA up to now…it’s never in DDs best interests.

Thanks @TheGoodcat Good your DD is going for walks but sorry about the pain.

Glad kayaking went well @Lougle

Sorry about DS1's stabbing pain @inthequietofdawn

Sorry about LA games @Beachgosling

Have had the plan through for the shed from the company making it and they've got a deposit and confirmed a date to start on it and to finish though said its subject to change but currently looking at end October here. DS is happily using our current shed.

Still sunny and warm here and I wanted to fill the black bin whilst we had an empty one 😂so we've been and cleared /cleaned downstairs bathroom, kitchen, downstairs cupboard then out into the garden and cleaned the silkies house and got rid of the gutter from the current shed as DS had done Ninja Warrior with it and got rid of some very old bits of wood in there and some leaf collecting. Good to have that done. DH yesterday drove down to Kent to return some of the paints, mould, insect stuff I had got for old shed as not worth it now and came back bringing a Toby carvery which DS loved and I loved. Though lots of birthday cakes / scones and Toby carvery meant that exercise was needed. DD is in Austria still having a nice time. DS going round the garden. We are predicted rain from tomorrow and its very much needed by the garden. I tried to get DS added to electricity bill but they can't do it without him signing so that's out and we will miss the UC reduction but its OK.

@inthequietofdawn ITA with @Lougle - “stabbed” is quite helpful.

@Lougle Did you ever see that TV series about people with an unknown long term condition? The TV program threw every conceivable expert at the problem, and usually they did find a rare cause, that none of the standard NHS doctors had thought of!

DD could be like that?

@Tulipandmagnolia rain is much needed.

@Beachgosling LA consults often give an incomplete &/or inaccurate picture. It is why it is a good idea to proactively contact setting who have been consulted or may be consulted to make sure they have the full picture. If your friend hasn’t done this, she should. The week before settings reopen is when activity relating to EHCPs picks back up so that will explain the timing.

@LathkillDale while it is helpful DS1 can vocalise that he is in pain, he isn’t a reliable narrator in the sense him saying he has been stabbed doesn’t necessarily mean it is a stabbing pain and it doesn’t necessarily mean it needs attention. To give two examples, DS1 has previously described a paper cut as being stabbed, and DS1 can’t tolerate showers and describes the water hitting his skin as being stabbed by needles.

The feeling of pain and how to describe it is so so hard I think when your brain is wired differently. I noticed DD2 couldn’t do this when she was younger and I struggle with recognising if something is really painful or I’m just being extra sensitive yet other times I’ve tolerated a lot without realising. DD2 walked /hobbled out of school once with a foot double its size but “didn’t think much of it” I drove her straight to A&E where I got grilled on how she had done it but she just hasn’t told anyone at school she’d hurt it. Luckily it was a bad sprain & not a break. Yet she’ll get a paper cut & it’s the worst thing ever with her reaction. I hope the goslings feel a bit less pain soon.

Even my DD who could be said to have a mildly different brain has odd reactions to pain - it's so true how something can distract you from major pain and something minor just takes over all your thoughts.

On the attention seeking front, I tend to think that something which started with no thoughts at all of getting attention can be self sustaining because it gets attention after it happens. This was what went on with a long spell of clumsiness with DS where breaking something by accident got a big fuss but then it all became a tactic.

She is a bit unusual @LathkillDale . From the day she was born they saw something was amiss, but dismissed it, and I've been playing catchup ever since.

Sleep clinic was a farce really. The Consultant looked baffled and said that she'd been referred for sleep apnoea but clearly didn't have it, wouldn't comply with the diagnostic tests, and wouldn't tolerate the equipment if she was found to have it. I explained that it wasn't sleep apnoea that I was asking for referral for, and it was more about us not knowing how much sleep she's getting, and whether she is sleeping badly or not getting sleep. He just said 'clearly she's sleeping because if she didn't she'd die.' He seemed a bit frustrated because he thought it was clearly drug related. I tried to say that it started when she developed her eating disorder, and he said that that's when the drugs started, so it was probably that. It's not that simple. For ages she was just on a tiny dose of aripiprazole (4mg). DD1 cried and I wanted to. He says to talk to the psychiatrist about her sleep because it's clearly all the drugs she's on.

Plus, I was really irritated because the HCA, who barely uttered a word, asked her to stand against the wall so he could measure her, and the weighing chair was in the way, so he dragged the tape measure diagonally from the wall, hovered it a little above her head and to the right, and miraculously, she gained 2 inches. It's not really relevant but come on, it's data. If you're going to measure, measure right. If not, just eyeball her, make something up and write it down.

Anyway, that's 90 minutes of my life I won't get back.

@LathkillDale my dd3 had very hard to control seizures so this is a path we have walked before. Ds isn’t the same presentation at all. With dd we were calling ambulances and carrying paraldehyde and had long stays in HDU. Epilepsy is hard.

@Lougle that sounds piss poor. I sometimes think your dd1 and my ds1 are so similar it’s uncanny. What about one of those smart rings to check sleep? I doubt they’re very accurate but they might be ballpark.

Maybe @Wellzizizbetter . I agree with you, btw!

The gastro consultant called this evening. He started with 'I'm not sure there's much I can do...' and I took the line of professional empathy. 'Yes, she's so tricky, there probably isn't anything you can do, because nobody can...' then he decided there were things he can do afterall. It works surprisingly well.

@Lougle I’m furious on your behalf. What was the point of the service accepting the referral if they were going to be so dismissive? Frustrating because I think something like an actigraphy would be helpful.

The difficulty with how pain presents in DS1 is part of the reason why I track various things. It helps me to know what needs attention and what doesn’t, even if DS1 is acting like it is the end of the world.

The Gastro Consultant asked me if the FODMAP diet would be feasible. I said it would be hard but doable, and DD1 would be very unimpressed. He's referring to the dietician so they can support it.

To be fair, he was a Respiratory Consultant, so he really was only looking at obstructive sleep apnoea rather than functional sleep difficulties.

ETA that he had been sent the daytime sleepiness questionnaire which bluntly triggered the threshold but had no context.

In that case, I think DD1 needs a referral to a sleep clinic with a wider scope, but I still think the consultant was too quick to jump to blaming medication.

Yes, I do to. He spoke really fast and I found it really hard to keep up because he was jumping between bits of her history and making links that I didn't think were brilliantly helpful - bearing in mind I'm an ex nurse, I can't imagine what the average parent would feel like.

The Gastro consultant was really good. We talked about the merits of investigation when there isn't a solid rationale, and I agreed with him, pointing out that if he did a colonoscopy a) she would need a GA because she wouldn't tolerate it under sedation, and b) he would need to do it as a best interests decision. So we decided that a change of antidepressant should be trialled, then a face to face appointment, then go from there, but also the FODMAP diet with support from a dietician would be helpful to try, despite being hard.

The college continues to be doing well for DD2. I emailed about the uniform (overalls) because of sensory issues, and I got a lovely response suggesting an alternative that would meet H&S requirements but would be less overwhelming. In the meantime I've managed to find a pair of dog grooming overalls that might work.

I think you have the patience of a saint @Lougle

I wrote to a zip wire firm but they start at £7k (!) and Im not keen on the diy kits, ds is very large and needs equipment to be very robust. Annoying but I will find an alternative. I still have all the fab suggestions from the weekend to work through.

@inthequietofdawn the language for DS1’s sensory experience is so familiar to me. Showers are needles, paper cuts are painful, noise, weather, air pressure. It’s a lot to cope with if that’s your daily experience.

Starting the process of return to study. It’s going to be a long difficult launch.

@TheGoodCat we're honking beside you. Breaks are so needed but it's always so hard to restart. What's on the menu this term?

DD2 amazed me yesterday. She will need a GCSE in science at some point if she wants to be a veterinary nurse. We were talking about it and she confided in me that she was worried about whether she could pass because she's 'not good at plants' because it's so boring so she has no motivation to learn it. After some chatting and encouragement, I left it. A little while later, she asked me to find a mock paper for her to take, and while I took DD1 to the hospital she did the mock and got a grade 4, which considering she hasn't done any science lessons in 5 years was pretty good going!

I've also managed to get DD3 an allotment. She's on a waiting list for a village allotment, but my Nan used to grow veg and grow/sell flowers from her garden over 20 years ago. I asked my Uncle, who owns the house, if DD3 could use the land as an allotment and he's agreed.

A patch to garden in sounds like a brilliant plan for dd3 and if dd2 can get a 4 going in cold she probably is far far more able at science than either of you realise.

I’m enjoying the slightly cooler weather. I’m not sure how but those super hot days seem to have gobbled up the summer without much getting done at all!

@Lougle I’m glad the college is being helpful. Well done DD2. If it wasn’t for DD wanting to study vet nursing, I would suggest human biology, but I’m not sure that would be accepted for vet med.

@TheGoodCat good luck resuming DD’s studies. The sensory side of things is interesting, isn’t it?

Although I think this is a pain that needs seeing. Overnight, DS1 has developed a temperature and his heart rate has increased. There a few other markers too. I know it isn’t DS1’s fault, but it would be lovely to have a few weeks where he is well. DS3 has a hospital appointment this afternoon. I have text to ask to move the appointment later so I can take DS1 as well. If the appointment was later in the afternoon, I would just text to let them know I was bringing DS1 as well, but I can’t because DS1 isn’t allowed to attend the earlier time.

It's all so complicated, isn't it @inthequietofdawn ? I hope it's something that can be swiftly resolved.

Can you not study GCSEs separately any more? Physics chemistry and biology? I don’t think biology gcse has much plant stuff in it. She could just not do that bit. Ds2 is biology crazy.

@Wellzizizbetter You can study single sciences, but there is a fair bit of plant material in biology looking at things such as plant cells, plant tissue, organs and systems, plant reproduction, photosynthesis, anaerobic respiration in plants, plant hormones…

Thanks @Lougle.