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Original poster

Been told today ds has possible cp

110 replies

ntt · 03/02/2006 17:39

Following on from my thread here ....
Had the appointment today with the neurologist. He was great and was a hell of a lot more on the ball than the general paed we'd been seeing. He examined him really thoroughly.
He told us that ds (now just over 7 months) possibly has cp. He also said the seizures weren't HIE like as been told, but because they happened within a couple of hours of his birth must have something to do with something that happened in pregnancy.
His legs are strong and the neuro thinks he'll be walking fairly soon, but has low tone in his shoulders and left arm - which he said was apraxic. We also had to have an ecg because his heartbeat seemed a bit strong. Everything else seems fine - eyes, ears, reflexes.
He said watch really carefully for any more seizures - infantile spasms.
I feel really weird. I'm still worried about his hc which is still following the curve, but if there is any intellectual impairment it probably won't be apparent until he's at school. I(s there any way I can stop worrying about his head circ?)
We've been signed up to the development unit and I'm going to a baby therapy group thingy on Monday.

OP posts:

Original poster

ntt · 08/02/2006 19:44

hi buzylizy

A small head could mean compromised brain growth resulting from damage (insult). Ds had lots of seizures very shortly after he was born which we are being told indicates some kind of foetal development problem which in turn could be because of his in utero environment or it could be genetic. Hopefully, if it is cp, it is just his cerebellum which has been insulted and it might just manifest physically. My nightmare is that the (possible) cp is just a symptom of something else, ie if his cortex has been insulted it will likely affect his intelligence. The more insulted a brain, the less it is likely to grow.

OP posts:

FioFio · 08/02/2006 19:59

This reply has been deleted

Message withdrawn

hub2dee · 08/02/2006 20:15

hi ntt - re: the consultant who thought the post-birth seizures weren't to do with the birth, but a manifestation of some in-utero problem... did s/he have access to your birth notes / traces etc. etc. ? I only ask as I'd have (perhaps optimistically) expected several consultants to have seen you / ds in your week in hospital IYSWIM... might it be worth a second opinion ?

Original poster

ntt · 08/02/2006 20:15

Hi Fio, whatever happens with ds I will get there with him and I hope very much I'll be draw some strength and direction from you and others who use this board. I'm just scared at the moment

We were sort of offered an mri on Friday but told that because the brain changes so much in the first year or two, it might not mean very much. Reading between the lines, I think he could tell I'm not able to handle what we might find right now. He was also talking about ataxia for which we're awaiting results.

I'm really really sorry if my posts about hc are weird to read.

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buzylizy · 08/02/2006 22:19

I was just interested in the hc part as I had the opposite worry with my nt ds.
My dd had a mri when she was about 3.
It can't change too much after that as her barrister was talking about using this in her case.
I do feel for you as waiting is the worst. I was actually relieved when I was told my dd had cp as up till then I felt like no one was taking me seriously.(sorry rambling) but memories are flooding back and all I remember is how horrible it all was.

Original poster

ntt · 08/02/2006 22:33

hub - sorry I missed your earlier post. It has occurred to me to ask for a second opinion. I was surprised on Friday to be told it couldn't be HIE because the seizures happened so soon after birth. If the timing's so crucial in the dx of HIE, why was I told that's what it was?? Ds was seen by two consultants (neither of whom were the neuro) whilst in scbu and they both said the same. The neuro (a he) only told me last friday it wasn't. He has access of course to all my notes, but he asked me to dictate the sequences as I remember them whilst not noticeably referring to them and composed his report from that.

BL, yep, the waiting is a killer. I would be so relieved to hear that my ds only has cp. Are you able to tell me why you have a case?

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buzylizy · 08/02/2006 22:39

most people who have a kid with cp take leagal advice as it is mainly caused round about the birth. We have been doing this since she was 5(she's 10 now) at the momnet we have about a 70% chance. I so hope she wins as I am so worried about when she is older.
My dd was dx at 8mnths I think they knew something was wrong but maybe they were waiting for a miracle lol

hub2dee · 08/02/2006 22:42

ntt - but I thought HIE was, fairly specifically, the 'disorder' of interrupted oxygen supply during birth IYSWIM.... From what i remember of your posts, and my googling at the time, it sounds reasonably possible the various delays, heart traces, fits etc. could well have been caused by the way the birth was managed, and not by a prior factor IYSWIM.

Is the consultant neuro who is telling you this at the same hospital as the two consultants you saw whilst in SCBU etc. ?

Obviously I don't know all the details, but it does seem strange to me as a layman.

When we saw a consultant ped to talk about dd's HC, I learnt there was a colleague of his, apparently a particularly bright guy, who is a consultant ped with neuro speciality. It's the other side of London, but maybe a second opinion from him or someone else might make things clearer ?

Original poster

ntt · 08/02/2006 22:42

It did cross my mind that that is why all of a sudden they're saying it had nothing to do with the birth. Surely they wouldn't do that would they??

Is there some kind of lawyer I could have a consultation with?

OP posts:

Original poster

ntt · 08/02/2006 22:44

Hub - ds's heartrate dipped to 40bpm and I and all the medics around at the time assumed that was what had caused the seizures. All the consultants I've ever mentioned are at the same hospital.

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hub2dee · 08/02/2006 22:44

Re - dictate sequence of events etc... I'm sure you remember stuff... but how clearly ? The guy should DEFFO be referring to heart traces during birth, all the notes which must have been scribbled then and in the next week about the fits etc.... it's not your job to brief him on the 'medical side' IYSWIM...

hub2dee · 08/02/2006 22:47

Well, you and I have enquiring minds, but I'd 'consider' the conspiracy theory ! I mean - it seems strange, ntt...

Perhaps I should shut up, I'm no medic, but I'd have presumed there is a protocol for a) fetal distress / heart rate dropiing and b) newborn fits... I'm sure these 'guidelines' / docs would outline whether the staff should consider the O2 deprivation as pertinent or if it's likely to be CP 'unmasking' IYSWIM....

Original poster

ntt · 08/02/2006 22:47

I wondered at the time why he was asking me all these questions when the official record was written down in the notes. I should speak to a lawyer with lots of experience.

OP posts:

hub2dee · 08/02/2006 22:53

Maybe, before the lawyer, an e-mail to other consultant neuros with a general information question on the heart rate vs. an 'unmasking' / 'expression' of CP (or some other health problem) causing fits would yield sufficient info for you to either be comfortable with what this person is telling you, or for you to question it / raise flags.

Possibly if you want to talk about births / lawyers / hospitals you should CAT bubble99 ? (Now is a difficult time though as the birth was one year ago next week).

misdee · 08/02/2006 22:55

tbh, right now i would be focusing on how to help your ds and not what caused it. he needs a MRI scan, physio if needed, you need to get into the 'system' so to speak. ask to see your hospital notes and once you kow whats happening (you wont know till yopu get MRI done) with your ds, then persue if needed.

hub2dee · 08/02/2006 22:58

I'd agree misdee, but if a consultant is trying to wangle the dx in one direction...

Yes, it's not going to 'fix things' and obviously the steps you describe may need to happen at some point...

ntt - HIE and seizures: "The most common cause of neonatal seizures is hypoxic-ischemic encephalopathy (HIE) brain injury. Asphyxial injury may occur in utero as a result of decreased uteroplacental perfusion, for example in abruptio placenta, cord compression, preeclampsia, or chorioamnionitis. Postnatally, conditions such as persistent pulmonary hypertension of the newborn, cyanotic congenital heart disease, sepsis, and meningitis can also result in hypoxic-ischemic brain injury. In those infants with HIE who have seizures, onset of seizures is generally within the first 24 hours after birth. However, the timing of onset is not a reliable indicator of the timing of the neurologic injury (4)."

Source

misdee · 08/02/2006 23:03

wangle the dx in one direction LMAO sorry hub

mieow spent years getting a dx for her ds. he is 'classic' spastic diaplegia, as she was told by physio i belive.

Just dont want Ntt to be focusing on persuing lawsuits atm, when she needs to be pushing for confirmed dx. its all too easy to slip through the cracks with the NHS. afterall i was told for 2years my dd was totally normal, she sees physio and oh dear she is hypotonic. You can see consultant after consultant but if they arent specialised in the area needed then they will draw a blank.

have you seen neurologist? physio? normal paed? SN hv?

misdee · 08/02/2006 23:04

i dont have a clue about HIE (?) but do about CP from an aunty and cousins view (my cousin also has CP, mieow has a genetic predisposition to her kids being at risk from brain bleeds resulting in CP)

hub2dee · 08/02/2006 23:07

LOL, misdee.... dirty moo.

... but in ntt's case, it sounds like the initial consultants were saying fits at birth were because of birth trauma, and now this consultant is saying they couldn't be. (Unless I've misunderstood).

Must get to bed.

misdee · 08/02/2006 23:11

tbh they could be, they may not be. ntt does need to get her notes, and persue but i personally feel it isnt the right time to be doing this. feelings are raw after suspecions with your child not being 'normal' (i cried when i picked up dd2 from preschool and they mentioned ASD) and it will be all too easy to put your energy into finding out why when you need to adjusting and pushing for dx.

i have gone over and over my pregnancy and birth with dd2, trying to pinpoint in my own mind where things may have gone wrong. and i cant. totally normal pregnancy and birth. but i knew something wasnt right, and have been fighting for years to get this far.

ntt, all the best love, hope youget some sleep, and you know where we are.

doormat · 08/02/2006 23:12

ntt my ds2 has gdd
I agree with misdee that you need to first start getting into the system and finding out what your ds has, getting all tests done and all therapy that required put into place before you start thinking of legal issues.
Whether a consultant is trying to sway a dx doesnt matter IME as anything relevant will all be put into the notes.

I must stress that you need to find answers as having no dx is a living nightmare(sorry if I offend anyone on here but it is a true statement for me personally)as it is the not knowing that is the bane of my life.

Hub2dee that is interesting, have a look at hypoglaecema sp??? of the newborn also, it is interesting reading.

misdee · 08/02/2006 23:16

living with no dx is a nightmare, for 3years i have been unable to say to people why dd2 is like she is (even as a baby she was different) and untill i get told yes she has AS (that is the surrent suspescion) i wont be happy with whats happening. i hate people laughing at her when she falls, or taking the pee, but i know now she has low muscle tone and spacial awarness problems wheich we are working on.

hub2dee · 08/02/2006 23:18

doormat - dd was hypo g at birth (IUGR so into NICU / SCBU), but she picked up fairly fast... hadn't really read much around it, but was interested in reading hunker's recent experience !

misdee · 08/02/2006 23:20

dd3 was as well hub (i had GD). her levels dropped alarmingly low and was slowe to pick up.

dd2 was my largest baby at 9lb 1week early. it is possibly i had undiagnosed GD with her, her b/s levels werent checked at all.

doormat · 08/02/2006 23:20

hub2dee never even knew until started legal proceedings that ds was hyp gl.

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