Thread 13: autism and any other additional needs A/W ‘23

[openupmyeagereyes]

Thread 13.

For parents / carers of disabled children, autism, adhd, and all other related neurological conditions. Most of us have children in primary school. But everybody welcome!

Chatting about anything and everything related to SN!

Links to previous threads.

Thread 12
https://www.mumsnet.com/talk/special_needs/4816294-thread-12-autism-and-any-other-additional-needs?page=1

Thread 11
https://www.mumsnet.com/talk/special_needs/4711291-primary-school-auties-11-2023-is-here 

Thread 10
https://www.mumsnet.com/talk/special_needs/4592899-primary-school-auties-10-summer-and-beyond-2022?page=1

Thread 9
https://www.mumsnet.com/talk/special_needs/4502988-Primary-school-auties-thread-9-spring-summer-2022

Thread 8
https://www.mumsnet.com/talk/special_needs/4422100-Primary-school-auties-step-into-Christmas-and-the-New-Year-thread-8

Thread 7
https://www.mumsnet.com/talk/special_needs/4303826-Primary-school-auties-summer-and-the-new-academic-year-thread-7

Thread 6
https://www.mumsnet.com/talk/special_needs/4166833-Primary-school-auties-spring-2021-and-beyond-thread-6

Thread 5
https://www.mumsnet.com/talk/special_needs/3953023-Primary-school-auties-summer-and-beyond-thread-5?page=36&reply=104240251

Thread 4
https://www.mumsnet.com/talk/special_needs/3748449-Primary-school-Auties-into-2020-thread-4

Thread 3
https://www.mumsnet.com/talk/special_needs/3628263-Auties-transition-to-Year-1-thread-3

Thread 2
https://www.mumsnet.com/talk/special_needs/3451020-Reception-auties-2018-19-thread-2

Thread 1
https://www.mumsnet.com/talk/special_needs/3080753-DS-with-ASD-starting-school-Sept-2018-I-am-feeling-overwhelmed

Update… not sure if bad or good. Interested to hear ww YOU do?

So v long eeg period. 22 hours. Zero seizures, either obvious or with no symptoms. However the eeg was ‘abnormal’, lots of activity which showed he was predisposed to seizures. Consultant said the nhs would leave it there… no epileptic seizures evidenced, get on with life. No meds needed.

I think I’ve said she’s very out of the box, very pushing the boundaries of medicine. She’s already said she thinks there’s a genetic blip somewhere. Anyway her recommendation is notwithstanding the eeg to start him on a specific anti convulsant med which is known to help with speech and see what happens. She referred back to a normal eeg he had years ago ago when on a full epilim dose and said if that could be achieved and maintained maybe it would improve his presentation.

this will not I can tell you already go down well with his nhs drs who will stop at the no seizures equals no meds. In fact I darent tell them… yet.

sometimes I feel like I’m treating the poor child like a Guinea pig. Then I think of the possible rainbows and think it’s my duty as a mum to at least try….

Sorry I’m hogging this thread atm. I’ll shut up very soon 🙂

carrie is this a med he’s had before? What are the downsides of giving it a try?

And what does dh think?

@carriebradshawwithlessshoes interesting, and yes, a bit difficult to know how to proceed. Re genetic blip - you already had genetic tests right?

do you know what the medication in question is? Is it a steroid? Guess have to weigh up side effects and such. How long would it in theory take to see 'progress' (i.e. how long before you could stop again if it wasn't helping?)

Thanks both. To answer, DH thinks it’s worth a try, it is not one DS has tried before. She says give it 6 months to see any benefits. She says few side effects, it’s generally well tolerated tho of course there’s always some side effects possibly.

no Ahna it’s an anti convulsant not a steroid. He had had a full micro array which showed nothing however they can do full genome testing which as I understand it is deeper and he’s never had that. He doesn’t have any dysmorphic features but she noted his hyper mobility; said his skin was stretchy/ soft (I wouldn’t have noted that); and obv the seizure history. And speech delay of course. Those were the ‘genetic’ things she has commented on.

Intersting - didn't know hyper mobility was linked to genetics.

I guess reassuring that side effects sound OK. I'd be inclined to go ahead (assuming you can - the NHS / private back and forth sounds tough). Although if it was me I think I'd feel sceptical about expecting any drastic improvements in speech off the back of it (of course I'm not a doctor) but if there could be small improvements in presentation I'd find that already enough to go ahead (in our situation anyway)

There is a genetic blip which leads to hyper mobility/ stretchy/ soft skin and I read somewhere once this is the most common ‘asd’ gene so yes, it is.

interested that you are a bit sceptical Ahna though if there’s nothing lost we will prob try. As a separate issue do you not think there is anything you haven’t yet discovered that will have a major impact for DD? I crazily have in my head that there is but I just haven’t yet found it…

Dr Bradshaw of course speaking here!

I have a very readable (but bet it’s not in your reading lists!) book written by Jenny McCarthy and her Dr when her son was young with v severe seizures. He’s an adult now and fine, she says some interesting things which worked for them and I do hope there’s something for DS. Not to not make him autistic or whatever, but just higher functioning with things like speech and of course to be seizure free.

Carrie it sounds worth trialling. I don't think that you have anything to lose. Do you have to see NHS consultant at the moment? I would see if you can postpone it and review after DS has been on new medication.

I am sure that DS probably has a chromosonal abnormality. He has had micro array and also a couple of consultations with genetics but nothing was found. My nephew has a v rare deletion (only 20 in the world, including as it turned out his Dad). It hasn't really given more insights/treatment options/strategies whereas his diagnoses of Autism, dyslexia and dyspraxia have.

Carrie you don't have to ration your posts!

Is that Mother Warriors?

The book? It’s Healing and Preventing Autism (which I read as I want to heal DS communication issues to be clear!). McCarthy and her US paediatrician. It’s very trashy but I can relate to it/ understand a lot of her comments. There’s a lot on seizures which I relate to.

Dimples, I think I’m in the minority when it comes to views on genetics. I also don’t know what it would give us. Ok so we find out DS has a mutation on his f gene. Then what? I Google to death f gene mutations, I doubt I’m going to get lots of happy stories. And what if it tells me everyone with an f gene mutation ends up never speaking and dead at 50. What is that going to do for my MH? Everyone needs hope don’t they? I said to the consultant well, if you tell me there’s a tiny chance if we test him further and find something that you have a specific targeted therapy or med I’ll think about it. She said we don’t. So why??! Just ‘to know.’? To have closure? An explanation? I don’t think That would help us or DS! Obv if I was having another child then that’s different.

Dimples, so you think there is something genetic with DS? I thought it was related to birth mums alcoholic intake or is that wrong?

I had a very interesting chat with the dr in London about whether we can know too much (whilst he was glueing up DS.) He said yes. Test any of us and you will find things on an eeg, mri, genetic test.. we can drill and drill and find something with everyone given our now amazing medical advances. Of course most of us don’t need to drill. He said we can tell the patient our knowledge shows you have 6 months left to live and the patient says omg! And gives up. However otherwise they may have lived a lot longer with a different mental attitude (was reading about this with Johnnie Irwin.)

so each to their own but yes, tell me as much as you can about what may help DS but otherwise I’m happy not to know.

@carriebradshawwithlessshoes take what you mean re genetic testing - also fully makes sense what @dimples76 says re therapies / things targeted at syndromes are more helpful than anything (nothing) targeted at genes. I think I come at it from the opposite angle than you and actually I think if it is a bleak prognosis, I would want to know / work on acceptance (and of course finding the joy within that), rather than clinging on to hope of radical change. But maybe I'm wrong there and I wouldn't feel that way at all!

I also do wonder how I'd feel if (and I think it's probably impossible to say definitively) a doctor say this is totally random and not genetic and wouldn't be at all likely with another pregnancy. Would I be tempted by a 3rd? Really don't know - DD2 would absolutely love it and but not sure all the other considerations would outweigh (probably so)!

On the scepticism, I think I'm just a sceptical person but I would absolutely give it a go, I guess I just wouldn't want to be disappointed if the imporvement was less marked than hoped for.

With DS, I am not sure but with the epilepsy, growth issues, glue ear, abdominal testes and Autism (?ADHD and Learning Disability - still waiting to hear back from CAMHS) it feels like there is likely to be something- that's what paediatrician and Geneticist both thought. However, obviously I can't rule out exposure in utero. I think that the mostly likely is fetal valproate syndrome - DS's birth mother is epileptic, has a learning disability and the pregnancy was unplanned. However, I have no information re her medication. All of DS's difficulties listed above apart from epilepsy can be associated with that syndrome. However, he does not have dysmorphic features. He did used to have frontal bossing (a very prominent forehead) but that changed as he grew. He won't get that diagnosis but would it really change anything? One particulary scary thing about the syndrome is that it can be congenital problems with the heart but DS has had an ECG and all was fine.

Are any of you members of SWAN - Syndromes Without A Name? I used to go to some good events organised by them but there has been nothing since Covid.

My DS seems completely oblivious that he is different to other people- it might alter my perspective if he was looking for answers.

I guess one of the upsides of doing full genetic testing is if, in the future, advances are such that there’s a treatment for something that you’ve already previously identified. Otherwise, I agree, it’s a not particularly helpful if there’s no defined outcome or course of action and you’re not planning any further dc. We declined testing when ds was diagnosed, there was nothing obviously unusual about him physically etc.

We’ve had an up and down week, some good days, some not (at school anyway). Today was good though so we’ve ended the week in a positive place.

Good to end on a positive Open.

Are some of you on half term now? My DC break up next Friday. DS fell asleep after school for 2 hours on Tuesday and looked exhausted at pick up today - his 1:1 said PE and a visit from OT had wiped him out. Don't want to jinx anything but DS is on pretty good form at the moment including spontaneous displays of affection and declarations of love

That’s good dimples! Schools here finish today for half term. DD is next Fri but she’s at a private school so different timeframe.

We’ve got another week dimples.

Glad things are going well, it makes such a difference.

How is everyone?
Did you make a decision carrie?

We’re ok, yesterday was better than Mondays have been of late. Ds won’t eat pancakes but I’m making some for mine and dh’s dinner tonight.

Open my 2 both love pancakes but we probably eat them too often (probably every 3-4 weeks) for pancake day to feel such a treat as I experienced it as a child.

DS and I are watching Dr Who (from Christopher Eccleston onwards). It is a nice routine that we have got into after DD is asleep. DS never seems to get scared though and thinks it's v funny if I do. Last night involved a character aged 43 dying. DS checked how old I am (47) and asked when I was going to die and who would be his Mummy after I die. I told him even after I die that I will always be with him and he replied, yes, you will be in my heart (we have talked like that about my Gran who died a couple of years ago. I am not one for a stiff upper lip and after contemplating DS navigating the world without me I was already v emotional. Needless to say I failed to hold back the tears.

Gah, lost my post…

dimples it’s a hard thing to think about but v sweet from ds. I say the same thing to mine.

Pancakes when I was young were thin with jiff lemon and sugar. I use the drop scone recipe from the BLW cookbook these days as I prefer thicker ones. I used to make them every weekend but ds never ate any. With maple syrup. Yum.

Aww @dimples76 that would bring tears for me too! We didn't manage pancake day, I was late at the office that day. I guess maybe belated this weekend (although I know that's not really the idea to do it during lent... hope I'm not offending anyone!).

Half term starts today here but doesn't impact us this year. Next year it will - we just got confirmed that DD2 has her first (well, our first!!) choice of school, so that's good. Same one we had chosen for DD1 before it was clear that that wouldn't work out.

We've had an OK week - DD1 extremely intense / 'busy' in the evenings - hard to describe - the levels of movement and noise are something else. Even after plenty of stimulation in the day. But if we put her to bed at 10.30pm, she is generally sleeping by 11pm, and not waking until the morning on I would say 5 out of 7 days a week. So that's really good progress.

Going through a phase where she keeps pooing both bathtimes - really unpleasant to clean up and obviously means having to get both DDs immediately out the bath, just generally sub optimal. Not sure what's triggered that - I guess she just feels chilled and comfortable.

Ahna probably a feeling of relaxation affecting the bowels? Congrats on dd2’s place and great news that sleeping is improved.

We’re now on half term, ds did great today.

That's good Open. Hope the hold go well.

Yay for the improved sleep Ahna but I feel your pain with the bathtime poos. Might she be getting constipated at all? Mine have both pooed in the bath when they have been constipated.

I am parked outside school waiting for the DC. We are driving straight off to see my best friend's daughters in their village's production of Frozen and then staying at a hotel overnight. Think I am probably being a bit over ambitious with this trip as my two are v tired. It's a shame that our half terms are different weeks. Plan is McDonald's drive thru then about 1.5 hours to the hotel. Really hoping that they sleep in the car. If not DD might be v cranky. It seemed like a good idea a few weeks ago! Apart from this we have quite a quiet break planned.

Hope the trip goes well dimples