I can hear how utterly exhausting this whole journey has been for you and your family. The cancelled appointments, intercepted referrals, and incorrect notes following you around must be very frustrating.
It seems you’re doing absolutely everything you can - you’ve got your timeline documented, you’ve escalated through PALS, you’re working with the epilepsy team, and you’re staying on top of every appointment and result. You’re being a great advocate for your daughter.
The EEG at the end of the month is an important step forward, even though the waiting and not knowing is so hard. With regards to results and timing, you normally won’t get your results on the same day, as the recordings will need to be analysed first and will be sent to the doctor who requested the test. They can discuss the results with you a few days or weeks later.
We’re here on the forum whenever you need to share what you’re going through, though I know we can’t give you the medical answers you’re understandably desperate for. Those will have to come from the specialists, frustrating as the process has been. I hope the counselling support comes through soon too - this level of stress and worry is a lot for anyone to carry, and you deserve that support.
Thinking of you ahead of the EEG and the February appointments, do let us know how they go.
Oh dear @LoisMum and Lois I cannot imagine what you are going through and @Ceri_BloodCancerUK has said it all in her response to you. We are powerless to resolve all your continuing medical issues, but personally I think this forum has other advantages as it gets my thoughts and feelings out of my head onto a text, those fears, frustrations into a diary form, which can help me when I factually prepare for medical appointments.It can also help me if I have someone to come with me to appointments.
The powerlessness of not knowing and waiting feelings are really horrible for me.
Yes, your very natural mum instincts really come through from your posts.
Please do try and look after yourself as well as you look after dear Lois and your family and update us when you can.
He had the results of her sleep deprived eeg (for thr november absent seizure) and this showed as nothing of concern.
So her seizures are on a watch and see sort of approach still. Sigh.
He agreed to do a sleep study to look for sleep apnea, but date is to be decided.
He did not want to discuss the platelets and again suggested she must just track high….? I am still puzzled because that just doesnt seem to be a real thing?
Anyway it means we just have to wait to end of March /April to do another blood test to see hiw it is for the haematologist but if they dont even know what to do about it and not concerned, what is even the point?
I know it will still be high and it will stress me out and they will all just say oh but its nothing shes fit and well….except for she keeps passing out! Also for no reason.
am I weird for feeling like there is a connection? I am a bit frustrated that given they have no idea why the platelets are high nor why she is passing out how they can be so sure the two things are not related… to me that is quite odd.
but I seem to have hit all the dead ends. even my husband feels like giving up at this point. do I just do the same. it just feels a bit wrong to me. ive never heard of kids just passing out and no one being concerned, and these two issues have run in parallel since she was very little.
We saw a neurologist team last week. The confirmed the eeg was normal.
The new dr reviewed every passing out episode with me in great detail (and photocopied my notes and timeline so thank you as she was more interested in that than I was expecting)
She said that for epilepsy while very varied, in individuals the patterns are very similar and she felt there were too many things not forming a pattern here, that meant she wanted to park epilepsy… she wanted to instead explore rare forms of migraine (which i get and my dad get with aura) and which she said in kids isn’t always a headache…but could be dizziness, confusion or rarely passing out. She is also going to do blood tests for brain channelopathies and genetic tests to look for other clues…she also wanted to test me and my husband and do an mri
Well I have no letter on this yet, but today got a call to book the mri for next week! They did not have the blood tests so told me to mention this on the day. We had been trying to align her platelet retest (due end March/april) with this to be one less thing for her so this timing is actually perfect and I have asked her haematologist how to align…
the neurologist had no idea why her platelets would be high so that remains an unknown
she will need a GA/put to sleep so I asked if high platelets is an issue didnt really get an answer, so told to tell that dr on the day…
glad that this is being done sooner rather than later but I had not even got to thinking how long all these new tests might take to get back…
my gut still feels the episodes and the high platelets are linked. would an mri give any clues?
I just feel like with still no one giving thought to BOTH issues my gut is not happy. I thought high platelets was a bit of a problem for GA yet when I ask actual drs I am getting told no… I hate the constant contradictions!
Seems like the EEG being normal is good news, even if it doesn’t feel like it quite resolves anything yet. And actually, reading what the neurologist said, it sounds like she engaged with what you’d brought to that appointment and that she’s thinking carefully rather than just ticking boxes. The migraine angle is interesting given your own history and your dad’s.
The general anaesthetic question - I’d say it’s worth being very specific when you’re there on the day as well as mentioning itin advance. Something like “she has significantly elevated platelets - does that affect the anaesthetic plan?” makes it hard to brush past.
As for whether an MRI could give clues, that’s one for the neurologist. It sounds like she’s running a broad workup precisely because she’s not ready to settle on one explanation, and the MRI is part of that picture.
You’ve advocated for Lois and it’s clearly making a difference. Take care,