Neuro appt today, feeling stressed about it

[fanjoforthemammaries7850]

DD has an appointment with her two Neurology Professors today, just for a review.

They said on phone they have drawn a blank so I doubt anything bad will be said at the appointment but I feel absolutely sick about going.

I don't know if it's the fear they have missed something bad or the bad memories from the last appointment where we were waiting to hear she had something progressive.

Anyway I am all teary and need a kick up the bum!

was supposed to have counselling today but she is away, i think she has had a lucky escape this week!

We had neuro too, ds3 is currently wired to a mobile EEG on the sofa, so solidarity from here too. Whetehr he hasw epilepsy or 'just ASD absences or not, it's horrid as despite being able to do year 6 maths at age 7 they;ve ahd to pull him from the MS inclusion due to the absences which is a bastard. We're using teh DLA to send ds4 to a CM two mornings a week as the enarest we can get to respite.

So- lots of hugs, empathy and if you wish to join in a session of Extreme Swearing am always available

thanks. They are still considering epilepsy with dd but don't think she'd tolerate the video telemetry yet.

going into work now,will swear from there later

sancti's comment about extreme swearing is genius! seriously - do you have a friendly tame GP who could sign you off sick to give you a bit of breathing space?

Actually, work is quite helpful, I work with a good friend and it is quite a relaxing escape, to take my mind off things!

ah yes, I remember the SN board thread where many of us felt we went to work for a bit of a rest

yes, it is busy today but still a rest

It's very strange..every day I start by crying and being SEVERELY depressed, and by lunchtime it lifts and I feel fine..I think that is probably a sign I need to see GP and am depressed? Does anyone know?

Fanjo - I honestly don't know. As what you have been dealing with is enormously stressful, and high stress over a period can tip a person into depression. So worth you going to a nice sympathetic GP to talk it over with.

I don't really have anything constructive to say, but just wanted to say your family and DD are in my thoughts. Can't begin to imagine what you are going through, but it does sound as if you might (unsurprisingly) be suffering from depression. Your GP might be able to help?
Keep posting

hi fanjo

just read your post - not been on mumsnet due to family visiting.

i totally get the rollacoaster you are on. ds is under long and so far inconclusive investigation for all sorts of nasties including epilepsy and metabolic problems. His development has stalled rather than regressed but he is often so so tired that we have to limit what we can do with him.
Some days he does something that makes me think he has made good progress but then it seems like two steps backwards with his behaviour or motor skills

"every day I start by crying and being SEVERELY depressed, and by lunchtime it lifts and I feel fine"

I can relate to this - I don't know if you are depressed I think what you are feeling - sad, worried, overwelmed, tired - is completely in proportion to what you are going through with your dd and with your mum/aunt. tbh if you weren't feeling this it would be more worrying.

You need support, understanding and practical help. you need some space for yourself to process all that is happening.

I'm not sure if you can get the practical help and space but please keep posting for support and understanding.

i will keep posting, and will go to gp, thanks,you are all stars!

Fanjo, just seen your post and wanted to say I really feel for you. The waiting and agonising is unbearable. I remember the feelings waiting for test results and horrid 24 hr EEG's and MRI's under GA and the not understanding why our dd had lost all her skills..

Eventually we did get a diagnosis ( Tuberous Sclerosis incl Epilepsy ) and I'm relieved to have that - although the future is still uncertain..

It's so hard to get through some days isn't it, but the feelings you describe of the mornings being dreadful and then things lifting is familiar to me. It could be depression but I agree that it's not at all surprising you feel this way.. There is so much you are having to deal with coming from all angles.. Post away and get support anywhere you an get it.. Also maybe some treatment for relaxation may help, e.g. Massage or Acupuncture may help relieve stress symptoms?

With dd her abilities are unpredictable too. She has some days where she seems very engaged and is quite capable in some areas - not drawing though! And then there are other days where she doesn't really communicate much at all and she seems to forget how to do stuff, almost as if a light that needs to be switched on every day hasn't been switched on.. It's heartbreaking..

I hope the appointments coming up give you some more info and move you closer to finding some answers.. In the meantime, hang in there and look after yourself.. Sending virtual hugs..

Thanks DJAngel, it is good to hear from someone else who has been through same (although I wish noone else had to).

She is so variable as well, I have always wondered if its epilepsy related. Her EEGs were clear, but she didn't go into a deep sleep for the sleep one.

They have said they can't do longer EEG as she is so restless and wouldn't keep wires on.

Anyway, have made a GP appointment as I am feeling almost paralysed with stress and shaky, but only in mornings, its very odd indeed, I can be wanting to run away in morning and then almost happy in afternoon, will see what GP says.

Hi Fanjo
Depression (the illness, rather than the mood) is usually worse in the morning. So make sure you tell your GP that. He/She will probably give you a questionnaire to fill out... don't panic if you score full marks (a bit like an ADOS it can open doors

Fanjo, our dd was a nightmare for the videotelemetry but we coped so I wouldn't let them rule it out. DD was 2 at the time.

It was horrendous putting the wires on and she did pull some out once and they had to come and put them back in but somehow she coped. I have to say, I spent the whole time acting like a bloody cbeebies presenter trying to keep her occupied with various things.. And we had about 10 packets of hula hoops in that time!

It was so tiring and I don't know how we did it but it did give some useful info re sleep brain activity. She has severely abnormal activity when asleep and so that helped a lot, particularly in selecting right drugs..

Agree with Maria that often symptoms are worse in the mornings. Have to say I wake up feeling sick and with a sense of dread a lot of the time, but it does ease as the day wears on. The GP will probably offer you anti depressants or talking therapy which I think you're already having. Have a think about what treatment you feel would be right for you. Meds might be helpful to help see you through a really tough time, but they are not for everyone. They might offer some CBT which could be helpful for some symptoms but could talk that through with your counsellor who'd advise you about all that too..

I went to a talk at the weekend about families with an SN child and heard the expression Chronic Sorrow which comes and goes with varying severity for parents.. That summed up for me what I feel we might all experience.. especially in these early years where the future is so uncertain and so scary...

Sorry for long reply! Hope you are having an easier day.. and that you have a nice understanding GP..

Thanks. I will talk to them about it at our Glasgow appt in November, if genetics appt draws blank, as I hope it does!

Got a GP appt for thursday, not the morning so I will be OK when i get there though, hope she is understanding.

Today is not too bad, am tired as couldn't sleep last night.

Thanks again.

Silly me, have posted on the thread about a child being clever because she can dress herself, think i will hide that one!!

Yay DD just drew a really good penguin, a triangle and a diamond. Her drawings seem neater, so I am hoping that she is just thinking about what she is doing more and taking care.

oh that's very good news she is back to drawing!

yes, am praying she was just moving up a stage with her drawing.

she is also trying to write her name again.

And is using the old pencil grip, she couldn't draw when she was holding pen differently, as nursery had taught her, as we first suspected.

Should have believed in my instincts, but thought neurologist must know better than me.

in gp waiting room,teary already!

You've got to let the GP know your true feelings - don't hide them and say it's not too bad. That way you might get some of the help you deserve, not palmed off with half an aspirin for your blood pressure and a try porridge for breakfast!