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Possible mild diplegic cerebral palsy?

(15 Posts)
Louiseclairehall1986 Wed 27-Jul-16 18:15:49

Does this mean he has it or not tad confused by this one from Birmingham children's hospital :-( is it too hard to diagnose fully? :-s

JudyCoolibar Thu 28-Jul-16 09:29:29

It sounds like they haven't come to any final conclusions, but the easiest way to find out is to ask them.

Louiseclairehall1986 Thu 28-Jul-16 21:23:33

When I did they said they can never fully diagnose because his poor muscle tone and hyper mobility can mask his spazams, but now I don't know to say if he has it or not I'm so confused

Summerdaydreams1 Fri 29-Jul-16 07:37:55

What is dc mobility like? My dd was diagnosed at 3yrs following an Mri even though she could still not crawl and walk. To me with her prem history and this it was obvious it was CP but for some reason they would not commit to a diagnosis hmm
It's horrible being in limbo and I honestly don't think the doctors realise what angst this causes parents. Hope you get some answers. Be pushy, keep asking. Do you see a Physio?

Louiseclairehall1986 Fri 29-Jul-16 21:02:17

He can walk, but he struggles, gets tired easily, they have diagnosed hyper mobility and hypertonia but still just a maybe with the company, it is hard as people ask you what's wrong and your like well it's maybe this and that's it, can't say much else :-(

mumsnit Sat 30-Jul-16 17:21:40

How old is he? Quite often they will wait until minimum age 3 to make a firm CP diagnosis. My dd wasn't officially dx until age 8 which can happen with mild cases.

minipie Mon 01-Aug-16 11:48:16

Has he had an MRI? My understanding is that that is one way to tell if it is CP or not as the area of damage to the brain would show up.

DD's very mild hemiplegia was diagnosed at age 3 with an MRI, that was private however so don't know if they would have done an MRI on the NHS.

DD can walk but gets tired easily too. Also she was prem and not breathing at birth so CP was an obvious thing to think of iyswim. Was your DS prem or had a difficult birth - is there anything in his history which could have caused minor brain damage?

sh77 Wed 03-Aug-16 08:43:29

Ds (5 ) had an OT appointment two days ago and she said she thinks ds has DCD, which encompasses more than dyspraxia. Interestingly, I didn't see her doing any scoring or filling out bits of paper during the appointment. Is this normal?
Anyway, I'm gutted...

Everydayaschoolday Wed 03-Aug-16 09:33:49

DD2 had her MRI at 13 months to confirm CP diagnosis. It was done on the NHS. But she had traumatic birth, failed to meet milestones, had seizures, had high muscle tone etc so there was a lot of CP indicators there, which warranted the MRI.

Louiseclairehall1986 Wed 03-Aug-16 11:12:27

Ethan had a Mri Dec 2013 or did show mild pvl which far as I've been told causes cp?

minipie Wed 03-Aug-16 11:18:01

Yep I think PVL means it is CP afaik. I've looked back at DD's diagnosis letter after her MRI and it says:

Her brain MRI study that I also reviewed with the parents present confirms that she suffers from periventricular leukomalacia and in fact her left cerebral hemisphere is slightly more affected than the right. I have therefore today counselled the parents with the diagnosis of a right hemiplegia due to periventricular leukomalacia in the context of white matter injury of prematurity.

How old was he when he had the MRI?

Louiseclairehall1986 Wed 03-Aug-16 11:58:20

He was two when he had his Mri, he did have a traumatic birth aswell, I have grade 3 placenta Parevia which resulted in a lot of blood loss, he was born by emergency c section and I had three blood transfusions, prior to that I had been in hospital for six weeks as it was too dangerous to leave be cause I kept bleeding basicly got told if I left and didn't get back to hospital in time we would both die

minipie Wed 03-Aug-16 15:09:42

Oh gosh, that sounds very traumatic, poor you. I guess that, with the MRI, does point to CP then. I'm not sure why they are saying maybe re the CP. From my understanding the MRI would confirm it - but I'm not an expert.

AbigailBath Wed 03-Aug-16 16:44:47

Hi, I hope you don't mind but I was just reading your message thread. I should clarify that I am not a doctor, but I did study medicine at uni and now work in a legal capacity with families affected by CP as a result of traumatic births and I hoped that I may be able to help a little.

As you say, PVL does usually signify damage to the area of the brain adjacent to the lateral ventricles, which are reservoir like structures on both sides of the brain. The reason that this area gets damaged easily is because when babies are born, it is this area of the brain which is very active and requires a lot of oxygen and energy. When the flow of oxygen and energy is hindered for any reason it is this area that sees the most damage.

It is not an exact science however, some children seem to have lots of difficulties and little on their MRIs to show for it while others have lots of damage on the MRI but few problems. Some children with PVL are diagnosed with CP but not all.

This website has some useful info on PVL and CP generally.

www.clinicalnegligenceteam.co.uk/birth-injury-info/cerebral-palsy/causes-of-cerebral-palsy/#jumpto5

I do hope you are able to get a diagnosis soon though because it is horrid being in limbo.

sh77 Wed 03-Aug-16 21:47:17

Apologies for earlier post - wrong thread.

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