What is’t you do?


EEG result letter: ‘in view of your concerns about possible seizures…’ Ummm… wha? Seizures? I’ve never thought Harry suffered from seizures! He hasn’t had a seizure since he was 48 hours old! ‘…there was no evidence of interictal epileptiform activity or focal abnormality.’

So. Not epileptic, then. Erm… good?

He does still have the occasional peculiar eye movement and associated repetitive movement – my description of this to his Paed is evidently what actually scored him the EEG in the first place – but I’ve generally been of the opinion that he’s dealing with sensory overload, as opposed to a neurological flip-out. Because, you know, I see a dozen kids with these types of issues every day and know exactly what I’m on about. Cough.

Anyhoo. It’s nice to know that something we never thought was a problem… isn’t actually a problem.

We saw Harry’s new Paed yesterday, who is a neurology specialist. She’s rather quietly spoken, which was a bit of an arse, as Harry was tired, stroppy and sounding off at high volume. Consequently, even after we compared I-Missed-That-Bit notes afterwards, John and I are still a bit foggy about one or two things, but in essence it went well, I think. Hard to say, in truth, because I did 97% of the talking. Those of you who have had the distinctly equivocal luck to meet me will have observed that I am a compulsive chatterer when not perfectly relaxed, but given that she wanted to take a very comprehensive history indeed, there genuinely seemed to be an awful lot to tell. My not-so-inner Worrier was delighted to be quizzed so closely, but after reeling through fetal distress, IUGR, NICU, milestones, behaviour, muscle tone, digestion, gross motor, fine motor, eyesight, autism, hearing, hypermobility, sensory, vertebrae, physio, short stature, orthotics, School Fabulous, speech… I was parched. I lost count of how many pages of notes she took.

She tested Harry’s reflexes, which he’s not had done before; he seemed to find being tapped with a hammer both fascinating and delightful. I have a sinking apprehension that his versatile new knowledge will fully come home to roost tomorrow morning when I am dozing peacefully in bed and he pulls his usual trick of utilising my semi-conscious recumbent form as a racetrack / trampoline / ski jump / tyre wall / vaulting horse / crash test dummy.

She had a good listen to what used to be his VSD (Harry had a crashingly loud murmur; his old Paed joked on one occasion that he could hear it from the end of the bed, sans stethoscope. I immediately felt an urgent need to run away from The Joke in order to hide in a dark cupboard and headbang my mortified way to better acceptance and less fear of my 3lb 12oz-born son’s 1cm+ heart perforation. His Watch-Me-Turn-Blue! apnoeic episodes during every nappy change didn’t help). Harry, a stethoscope-owner himself, submitted to this with a frozen, delighted expression – before cheerfully piping up with a helpful ‘Dum dum dum dum dum’.

Eventually we ran out of time. I’ll have to see what the clinic letter says, but for now I think she’s testing his gut (troubled) and eyesight (probably perfect, but never been checked) asap; I should think the physio referral I asked for will happen now, and we’re going back to see her in a couple of months to discuss The Future.

I think… she Gets It. She told us at the end that it might be a while before Harry receives a diagnosis, as there was so much for her to sift through.

I then explained that I had started Googling ataxic cerebral palsy when Harry was 3 months old; that it had always been so abundantly, patently, and crystal clear to me that Harry was Not Quite As Other Children Are. The fact that 90% of my friends and family couldn’t see any issue whatsoever with Harry initially was a relatively minor pinprick, but when health professional after health professional was totally unable to see what I saw and wouldn’t take my concerns seriously, I became savagely frustrated. She listened, and she nodded. I couldn’t hear a word she said, mind you, because Harry was screeching like a black and midnight hag, and we departed.

Providing there is Progress, taking her time while picking out the clinical sheep from the transient-toddler-quirk goats is perfectly acceptable to me; the mere fact that she recognises that there is a diagnosis to give is… enough. It’s enough for now.

12 Responses

  1. Well, I’m glad she listened, because I happen to agree with your maternal instincts on this one. Something Is Wrong. Hopefully this new doctor will help you figure out what that is.

  2. Well this sounds wonderful. I’m so very very glad to hear you finally seem to have graduated to being Taken Seriously. And I’d hide anything in your house even remotely resembling a reflex hammer.

  3. Doctors who listen make the best doctors. Bedside manners even make up for a lack of knowledge sometimes, cause the doctors listen and believe the patients.

  4. Thank buggery. I think if one more medical professional had given you the ‘what wobbles?’ run-around I’d’ve gone off like an exocet on your behalf.

    Not epileptic, eh? No shit. Sorry, must go have a little scream and a ‘why the effing EFF won’t they LISTEN when being given a case history? WHY? WHY?’. Sorry. Projecting my own issues a little there. Anyway. Glad the EEG was nice and boring. Good. Yes.

    ‘Dum dum dum dum dum’ indeed. Bless his little shrieky everything, that was CUTE.

  5. Sounds like a good un. Just needs to speak UP. Good that she listened, and took you seriously – that was half the battle.

    How ARE your reflexes? I presume Harry performed a full test this morning?

  6. Why do I have a picture in my head of Harry attacking your knee with a claw hammer, while chuckling gleefully? Hope all your reflexes are keen enough to escape that sort of thing!

    Sounds like a useful visit for a change. It’s always a nice change to be heard by your doctor, and it happens so very infrequently. Sigh. Too bad you couldn’t hear her, though…maybe next time.

  7. Three cheers for a listening Doctor.

  8. I’m so glad you felt heard. And I hope you have some answers soon.

    “Dum dum dum”…. so! cute!

  9. Sometimes I think t he most powerful thing anybody can do, whether they have an answer or not is hear that there is a problem in the first place.


  10. That all seems like progress. I think “no diagnosis yet” is a good place to be because the real danger is a wrong diagnosis. At the moment they seem to be paying attention to everything possible. This is good.

    Incidentally, the EEG may have ruled out a lot of other things as well as epilepsy; it may be that epilepsy is the only one they thought to tell you about.

    Onward and onward eh? Good luck.


  11. Fantastic that she is taking you seriously. I hope she continues to follow it up.


    There is something so very, very wrong in the phase: “We saw Harry’s new Paed …”

  12. […] was supposed to be involved but never materialised – our three month recall from our June appointment has, yet a-bloody-gain, not happened, and I need to chew someone about […]

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