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SN children

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Original poster

Bit of a rant. - What else causes symptoms that mimic cp?

12 replies

yomellamoHelly · 17/03/2011 13:39

Trying to get a better diagnosis for ds who is 4.3 and has cp. So saw neurologist this week.

Official diagnosis is gdd and has caused various problems with NHS and getting statement. Lawyer advised us we really need a better diagnosis to ease things in future when fighting for therapy / equipment and for future reviews.

So asked neurologist for cp diagnosis to be told only way he would do that was following a MRI scan to confirm damage and rule out anything progressive that would mimic cp.

Can't believe this is the only way to get a cp diagnosis tbh.

Anyway despite going round and round in circles he wouldn't tell me what those progressive conditions might be and refused to budge from his stance.

Gut feeling is that this is ridiculous. Couldn't care a jot about "findings". Just want the cp diagnosis. Feel no GA should be entered into frivolously. There will always be some risk and this is probably another NHS tickbox exercise.

However ds has a dislocated hip as he was left hanging by the NHS (told to come back if any further concerns after hip reviewed 2 years ago). A second opinion said the time to sort it out on a muscular level was 2 years ago! So now he's waiting for a date for bone surgery which might have been avoided. Anyway, my point is if I'd known I wouldn't have been fobbed off 2 years ago when I knew his hips weren't as they should be. To my eyes his hips haven't changed massively in the 2 years (but I'm not medically qualified). They were never right and they still aren't.

So ....! Is there anything that would mimic cp that's so serious it would need nipping in the bud? Neurologist wouldn't elaborate despite going round in circles for an hour.

Hate to put ds through a GA without knowing the risks / potential conditions etc.... and making a considered decision.

Refused an MRI in past because felt it wouldn't change his treatment. (It shouldn't. But does in reality. Or it would do if anyone did anything to help!)

OP posts:

Original poster

yomellamoHelly · 17/03/2011 13:39

Sorry. A bit long!

OP posts:

beldaran · 17/03/2011 14:16

I dont know if im going to help much, but the only way that we got an accurate diagnosis of Cerebral Palsy was for DD to have an MRI scan.

She did not have a GA though, we had sedation. Is that something that you think he could do?

Feel free to disagree with me, but i think the only way you are going to get the accurate diagnosis for your son is through the MRI scan, as at the end of the day he may not even have CP, but they won't know until they have done the scan.

HTH

HairyMaclary · 17/03/2011 14:45

I do know of someone who thought their DD has CP and was given that as a diagnosis until an MRI showed no brain injury. They then had further tests and discovered that it was Prader-Willi syndrome. This diagnosis has some fairly serious implications which are now being managed. However some of the symptoms of this would have developed in your DS by now if he had this and not CP.

I have heard of some things that mimic CP in the early stages but that turn out to be really nasty but only anecdotally so can't help you there.

We went for an MRI as we wanted to be sure and check that there wasn't anything else going on. There wasn't and it hasn't changed his treatment, as far as I know, but it has been looked at a number of times since, once to see if he would be suitable for a particular type of operation. The decision about this op could not have been made without the MRI scan so if he hadn't have had one already he would have had to have had one then.

ladylush · 29/03/2011 20:46

I'm reading this with interest as dd recently had an MRI and we are waiting for the results. We're expecting a dx of CP and really hope it's nothing more sinister - seems weird to say that iykwim.
Hairy - were you considering SDR? We are contemplating this for dd - assuming she does indeed have SD CP.
Yomella - I really hope all is ok - well ykwim. I so know how angry you must be feeling about being fobbed off. Dd's motor disorder was missed by at least two paediatricians.

glittery · 30/03/2011 13:31

ds has a dx of Dystonic Cp, he has never had an MRI but was born at 26weeks so most likely cause really

HairyMaclary · 30/03/2011 13:39

Yes, were were / are considering SDR. Have been accepted in the USA but not too sure about going ahead - we have some concerns about the long term (20+year) outlook. We are looking into it further and DS will be having a few assessments over here in the next couple of months. We may still go ahead but we want to be very, very sure and DS is already walking independently, although not well, so it's not a case of he'll never walk without it.

shaz298 · 30/03/2011 16:10

If it's any help, several docs thought our DS had CP. We moved from Holland to UK when he was 18 months and after meeting him once his comm paed announced 'and of course he has cp!' I queried where she got her diagnosis from since it had never been mentioned and she tried to poo poop me saying it was just a term they use...........

Anyway having the personality I do, I didn't leave it there. I contacted the neurologist who then saw us and ( Luuk had previously had an MRI for other tings so they had done his brain too) he said that there was nothing visible and he would not be prepared to write down that diagnosis!

My son had hypotonia and hypermobility syndrome ( in additon to club feet and many internal abnormalities). If you were to watch him walking/running you'd probably say he had CP. Not sure how the 'symptoms' manifest in your little one. My DS is very able cognitively and he is mobile but does use a wheelchair for distance. Could it be hypotonia/hypermobility???

glittery · 31/03/2011 07:06

"having the personality I do" cant think what you mean Shaz!?!

tiredmelly · 31/03/2011 21:18

The paed originally thought my DS had cerebal palsy, but the MRI was clear. It was then found he has a chromosome deletion which most probably is the cause of all his symptoms.

skewiff · 31/03/2011 21:40

DS has a diagnosis of CP/ hemiplegia.

We have never had an MRI brain scan - tried to, but sedation didn't work and we chose not to try again as it was all to stressful.

budgieshell · 31/03/2011 21:50

Our dd has cp her scan was non conclusive but we were told because she was born at 32 weeks, her gait and a turn in her eye it was cp.

madwomanintheattic · 31/03/2011 22:52

dd2 has had 2 mri scans (one at 12 days, one at 4yo) - first one sedated, then the next ga. (she does have cp).
an mri gives a reasonably accurate guide to the timing of the brain damage, which is quite important to know if you are determing whether an injury occurred at birth or at some stage during development, which is why we went for a second mri later.

they are unlikely to do further tests without first doing an mri - there are of course other explanations for cp-like symptoms... damned if you do, damned if you don't, really.

if it helps, the only contra-indication for ga that the hospital were worried about was epilepsy or prior sz activity.

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