To think my husband is gravely ill at the wrong time? Thread 2

[MyOtherCarIsAPorsche]

Continuing from 1st thread.

Have you read the epilepsy society website? Diagnosing epilepsy can take time as there is not one simple test for it. They need to understand what is going on before they start a treatment plan,

epilepsysociety.org.uk/about-epilepsy/diagnosing-epilepsy

These are the NICE guidelines for children who have a seizure.

www.nice.org.uk/guidance/ng217/chapter/1-Diagnosis-and-assessment-of-epilepsy

And just seeing he has had treatment - lorzepam, and it is not working, so they will try something else unless they need to give it more time to work.
You are understandably very stressed, but it really sounds like everything is being done that should be.

@MyOtherCarIsAPorsche All three of my herd have EDS, and you know I do as well… (All diagnosed by rheumatologist). Each has different symptoms, of course. I have multiple ischaemic scars scattered through my brain (less worrying than all in one spot) caused by migraines that were mostly ophthalmic (according to symptoms) but also left witnesses concerned that I was having a stroke (despite low BP.). I am now on high dose anti-seizure meds - (which make me communicate badly) keep them under control. My DD2 definitely had seizures when she was little and is now having the same issues as I did with migraines. (God, I feel guilty!). As well as that, both of my DF’s siblings had uncontrollable epilepsy (back in the day when less was known). My aunt died during Grand Mal seizure in her early 40’s. (She was definitely exhibiting symptoms of an ABI before that, though.) The EDS is definitely from the same gene pool. I think there are too many links to disregard the epilepsy as a separate symptom. I do wonder if rheumatologist that will treat your DGS will also link it all?
I know the anxiety and helplessness involved with a little one who is patently unwell. It’s so very, very unjust.
I think you need to have a word to DH and explain how much extra stress his weird behaviour is causing and let him know that at the moment, it’s selfish. Acknowledge that he’s had a big fright but he could make his remaining time count by getting involved with the people who love him rather than being reckless.

@Fraaahnces

That is interesting - no idea it was linked. The developmental paediatrician said that he'd never seen such a 'floppy' 1yr old. So if he does have EDS, this could be an integral part.

Both my daughters have regular migraines. They build up in frequency and when they're prescribed a beta blocker - they stop immediately. They don't like to take beta blockers though because even a small doses makes them feel 'spacey'.

Another link with EDS I discovered was that some people look younger. My older daughter is 28 and she's asked for ID all the time. She looks 14. When she was 20, she was buying a large print of a Mini (car) and the man said Awww is that the car you want to have when you're a grown up? She said I've been driving a Mini for three years - she looked about 10 at the time.

Grandson has just had a 2 min episode in the barbers. The owner wanted to get an ambulance - I suppose it's alarming when you see it the first time. He's having between 6-12 episodes a day at the moment. He was told he would be fast tracked for an epilepsy clinic appointment the last time he was in hospital and told it would be within two weeks. The appointment came through yesterday - it's in August. His nursery have 'relented' and accepted him back - he had 5 episodes on Wednesday and 4 Thursday, whilst there. Just got to watch him like a hawk now when he's eating as one happened the other day when my daughter didn't know he had something in his mouth - which was scary.

We were wondering if his development has gone a little backwards since his episodes increased. He was saying Muma and Ta (thank you) and variations of his siblings' names quite early. This has stopped, which is concerning. The positive thing is - he's now standing independently (no holding on) so we're thinking he's getting closer to walking. He can walk holding on to furniture though tends to side step. (He's never crawled - he sort of propels his elbows forward and drags his legs. His brother and sister never crawled - they were bum shufflers.)

My husband has gone out to meet the estate agent (locally, he's walked there) - the estate agent himself wants the buy the property. I still haven't signed anything 🤔. He's having lots of dizziness - he doesn't tell me he's feeling dizzy. I can tell when he stands up and starts to walk. Or he'll be walking and suddenly stop and sway.

The frame for the decking at the static is complete and he's ordered the planks to be delivered there for next week. Our son is driving him up there so they can complete the job - they're staying there until it's finished. (It's a 6 hour round trip.)

He's at my daughter's house this afternoon as he's organised a brick delivery for a low ornamental wall for her boundary at the front of her house as her neighbours use her lawn to get out of their car and the grass has been worn away.

Tomorrow, he's at another rugby match - he doesn't know who can take him yet. He was thinking that I could take him. But seeing as I've always spent Saturdays with my children and grandchildren, I will not be in. I am usually in on Saturday as they usually come to us (we have toys which are large as we have more storage space) - but he's saying he still doesn't want the grandchildren around. He's behaving as though he's now fully recovered (apart from his pressure stockings and the no driving rule) but he won't have the wider family around. 🤔. His friends can visit though. He's taking advantage. He'll be wanting to sleep in my bed next. Not a chance - I've grown accustomed to the space (even though I still sleep in the edge of the bed). Separate rooms from now on. Never slept so deeply in ages - it's nice to be having dreams again. Haven't had dreams since I started with frozen shoulders in 2019.

Just want to say that until I heard your story, I didn’t think it was…. I am seriously wondering though.
If your DD’s have POTS or low BP associated with Eds, beta blockers absolutely suck. (Trust me!) I have been prescribed Topiramate - has nailed the migraines, but my hair is falling out and I grasp for words which is absolutely unlike me. (Also say the opposite of what I mean or use the name of the person I am talking to instead of the one I am referring to. Bonkers!)
I have the “younger-looking” skin. (The only positive…) Not being a knob, but I look more than ten years younger. My new trainee used to work as a beauty therapist and was gobsmacked to discover my age - and that I hadn’t filled my face with neurotoxins or fillers ever. (*She can spot this from miles away, it would seem!) My body isn’t buying it though. I work in the healthcare sector and my thumbs are trying to give up the ghost.
Is it legal for a real estate agent to buy the properties they are engaged to sell? It’s absolutely not here. They can be de-registered. Sounds suss.
I think your DH is acting in an entirely self-indulgent manner, tbh. He is taking advantage of everyone’s fear of losing him and running with it. Time to lose your shit. He’s not being your partner or a parent to your kids, or grandparent. He’s being a lone wolf.
Separate rooms I can only aspire to achieve. (DH is a snorer.) I love the idea of decorating with no one else’s “opinions” and being able to have autonomous control over things like electric blankets and laundry.

*Also want to mention that frequent seizures are utterly exhausting. Your DH may or may not be neurologically fine. He may be physically and energetically exhausted and simply recovering from that medication constant electrical storms and how they affect his body.

*DGS obvs… I’m doing icky early morning shifts - having to wake at 3am to get to work. Sigh…

Can you afford to pay for temporary childcare for the other children? Most Nanny agencies will be able to supply a temporary nanny for a while.

@Fraaahnces

I have found a link to neurological disorders, including epilepsy, and EDS.

I have just been sent the most harrowing series of videos from my daughter. My grandson, poor little mite, falling, freezing like a statue, (arms outstretched), coming round, trying to get up, freezing again. On the last video he came round, pushed himself to sitting and then bent forward and deliberately banged his head on the floor (he's outside on grass) four times. (He wears a padded helmet at all times but it doesn't stop damage to his face.) Who knows how his head feels? Poor little mite. It's distressing for everyone.

That sounds awful @MyOtherCarIsAPorsche . Poor little mite indeed

My heart breaks for you all there. X

This has taken the best part of two weeks - normally would have been done over three/four evenings. Frogged and tinked far too many times. Still not perfect.

Just the lace welt to finish and attach.

Daughter has said she's had awful chest pain overnight, into her shoulder. Too much discomfort to eat yesterday evening. She feels a bit better this morning.

I'm wondering if it's stress/panic due to her son's episodes - well, hoping really. He had a bad run of episodes after the school run yesterday. Was wondering if he got over warm outside? Then again, we can't think what's triggering or if they're just random.

That wee jumper is a work of art! It wouldn’t surprise me if your DD has all kinds of digestive issues due to stress. She is carrying a huge load (like her mother!). I think it would be worth visiting the gp to discuss. May end up with a fast-dated visit to the specialist for DGS.

The little jumper is gorgeous. You know what needs doing OP I’m afraid - 111 will tell you it’s an ED job.
awful chest pain radiating into shoulder ( plus nausea) could be cardiac pain.
hopefully just indigestion but she needs an ECG and troponin blood test. Can only be done reliably in first 24 hours after the pain so she should head in today.

Good news OP , a very good friend of mine has just been appointed as a Vascular Surgeon at the castle - starts July ! Secret weapon!

@olympicsrock

Oh - that's good news - is someone leaving, I wonder?

My husband's main consultant is Mr C (green vegetable begging with the letter k). He did my daughter's father in law's surgery also. He was originally with Professor L (before the operation).

His six week check is on Monday. I want to know the general prognosis but I know my husband wouldn't tell me, even if he asked the question (which I don't think he will). I don't think he'll ask about genetic referral for our children either. He probably won't even mention his recent episodes of 'blindness'. He'll just go in and say he's great and can he throw the compression socks away? I want to go to the appointment but this is still not allowed. I have loads of questions, including what are the effects of being born with a fourth aortic branch, and is it still there or was it removed during the operation?

My daughter's chest pain has gone. She's been like this for a few years. I paid for a consultant and a scan privately in 2019 (echocardiogram) which was normal - no change from £1000. It comes and goes. She sometimes faints when this happens. They said it was some sort of autonomic dysfunction . (Sp?)

She wasn't answering her phone yesterday - I flew around to her house to check she was ok. She was outside - gardening. I was thinking all sorts.

My legs are cramping when I walk today - usually it's only one crampy leg. A sort of dull cramp - goes away when I stop walking. It's different from the cramp dance I have to do when I'm driving and the cramp from my foot starts going up my leg. I have to jump out of the car quickly and dance about until it goes. I have a set number of 'pulling in places' which I use on my routine travels.

I finished the other baby jumper yesterday.

Hello ,
Vascular and cardiothoracics are separate teams . CT do the heart and first part of the area, we do the branches and far part of the arch downwards. A closely linked specialty though who work today.

I think you will be allowed at the appointment. Rules are changing rapidly. My trust got rid of masks in public areas today. Our letters say no relatives but in practice we let relatives come in as we value good communication.
He MUST mention the labile blood pressure, dizziness and 2x transient loss of vision ( amaurosis fugax) .

prognosis is unknown . He will have surveillance scans.
the four arteries of the arch is not worrying it is a well known anatomical variant ? Ie not everyone made the same and will still be there. Don’t worry about it.

he needs a referral to genetics. GP or surgeon can do it. I sent you a link a while ago but I suspect Mr C will also be familiar with this pathway.

Hope everything is okay OP x

Just reading your thread. My Dp's dd had very similar symptoms as a toddler- I let him read your descriptions. She attended Alder Hey until they moved and then Great Ormond St

@motogirl
can I ask if she got a diagnosis?

I've had him since 8 am - he's already had four episodes. He has to be constantly watched. My daughter hardly sleeps because she's convinced it happens during the night and she's constantly checking him.

It seemed to begin with a serious of larger episodes in which we were so worried because the were so long, we rang for the ambulance. Now it's lots of smaller absences/focussed staring/subtle twitching. He falls when they start if he's upright. But we're convinced they happen overnight whilst in his cot. My daughter puts an owlet sock on him to monitor him - his heart rate goes high when we think it's happening.

At the weekend he fell on his nose - both nostrils were steaming with blood. Was just about to take him to hospital when he stopped bleeding after 10 min - blood everywhere. He has constant lumps, bumps and cuts - his padded helmet just stops the worst of the backwards falls.

We are trying to look for triggers - nothing coming to mind apart from tiredness. We know overnight that his sleep is disturbed. Something we've also noticed is that he can 'come to' after an episode and he's laughing. Also, he can tend to bite just before an episode. Sometimes family members, himself or objects. His first epilepsy clinic appointment is August.

His nursery are always telling his mum not to take him when he's unwell. They ring her at work telling her to come and pick him up all the time (after an episode). She's worried for her job. He's not unwell other than these episodes. She wouldn't take him if he's got a temp - as per nursery guidance.

On another note, I had to pick my daughter's older son up from same nursery at 12pm yesterday as he had 'asked' for the potty 8 times that morning. They told mum to ring the GP as he's 'got a water infection'. She rang and the doctor asked to see him at 4pm. He was fine - no temp, no pain, his usual lovely, kind and helpful self. He's a little treasure. The doctor appointment was looming and he hadn't asked to use the potty for me to get a sample. He was drinking water as usual. I gave him some apple juice to 'encourage' a wee. I managed to get a sample just before we had to leave for the school run to pick his sister up. We went to the GP - sample was clear. Doctor said that maybe someone at nursery has made him anxious about using the potty. He's not asked for the potty so far this morning - normal for him. No sign of frequency of urination he had at nursery yesterday. He's non verbal, so can't explain what's happening. He's 2 yr 5 months - dry since Easter, day and night. No accidents. (Daughter followed Oh Crap potty training book as he was dry overnight for a long time.)

I'm not impressed with the nursery's approaches with regards to my grandsons. They don't like the fact that one has fits and they send them home when they're not ill, whilst taking full fees. My daughter can't rely on them for childcare - she has enough to worry about. They appear to have given her older son a complex with regards to toileting - not good. No wonder he was reluctant to go into nursery yesterday.

Has the younger one who has episodes got a support worker at the nursery ? I'm guessing not as he has no formal diagnosis and probably no funding to supply an extra member of staff .

He would need someone at the nursery to watch him all the time ,they're busy rumbustious places and it only takes a split second for an accident to happen,and I can't imagine they have the staffing level to allow this .Or is it a specialist nursery catering for children with additional needs ?

So difficult ,and the poor little one must be almost as exhausted as his mother .

Have you got your councils early help team involved - they can support the nursery to get extra funding to support the kids.

Hi, I just read the part about his language regressing. My son had a rare form of epilepsy called Landau Kleffner Syndrome when he was young, which caused him to lose all of his language. Maybe worth a Google.

Many thanks for all the comments on the 'episodes'. Any more out there? Not frightening in the least - it's dawned on us that something is not quite right.

With regards to husband - I've been reading other threads. I think I have 'the ick'. As he's progressively got better - 'it's' got worse. I can't look at him. He's scrawny, his hair is longer 🤢and he's 'different'. Everything he says is just banal. He's completely contrarywise (if that's a word) - and to save arguments, just find myself endlessly agreeing to 'shite' I would never tolerate before (not in my head, with my mouth) and then distancing myself. I just want him to be out of the house during the whole of the day (don't come home until it's pitch black type of thing) - as before his 'doo'. I can tolerate small doses - then it's 'just shut up, you total dick splash'. (Not said aloud.)

The spending continues - lots of stuff to do with fishing is arriving. (Plus clothing.) Top of the range stuff, including the book Fishing for Dummies. He doesn't even know if he'll like it. I don't think he will. He's not known for his patience.

In other news - last night (and this morning) I have knitted some more baby stuff. Shortly going to Duttons for some ....

I know indeed. Blimey such twitters is not attractive.
the knitting is beautiful .
I thought of you yesterday and this morning (inspired) . I’m on my own this weekend with the boys so went to hobby craft and bought a children’s sewing kit to make a stuffed toy ( sloth) . 6 year and I finished it together today. Was lovely to do with him .