last week comuntiy nurse said they think dd as mild cp today another

[trace2]

wowan from social services can to asess dd for an hour a week said thr same she thinks shes showing signs of cp ,so why as her neuro not picked it up, is it cos we spent 5 mins with him they spent about an hour each with her? so confussed

Oh trace sorry I cant help just wanted to know im thinking off you xx

thanks lota, i know really ive been thinking this for a while so its not really a shock, just surprized that others can see it but not the doc!

i think it takes them a while to dx it. dd was being watched by hospital from birth. and looking back I am sure they knew. it still took them untill she was 10 months to tell me.

2shoes can i ask ? you dont have to answer if you dont want how bad is your dd? what can she or can not do she should be doing for her age? i know theres mind to really bad in cp and i think dd is mild but shes as bright as a button is this normal? but the lady said today its just she as seen so many she can tell and she as typical things cp childen as, like shes carnt eat solids poor eater failer to thrive, as hyptonic muscels sezures and so on, does it sound like it to you?

mild CP can take up to 3 years to be diagnossed. Severe CP like dd has is pretty instant.
Did she have an MRI?

hi nmc yes she did and was clear can they still have cp when clear?,

Hi Trace - my DS1 has mild to moderate CP and it can only be officially dx after an MRI scan which is usually done after they are 1 as it is a genreal anasthetic. We knew from the beginning that Ds had had a brai bleed as he had a brain ultrasound at 5 days old which is normal for premature babies, however we didn't get 'officially' dx until after his MRI. Having said that it was always treated as CP and we were having therapy from the beginning. There will be typical CP things that the nurse will notice but htere are different types of CP and that may make it even harder to correctly diagnose. My Ds is bright, he has no learning difficulties that we can tell, he has slow speech in that he has a very good vocab and language skills but it takes him a bit longer to get the words out. He isn't walking or balancing independently and has is not very secure in sitting - he prefers to kneel. In terms of feeding , I breastfed DS1 for 15 months and it took a long time for him to learn to suck from a beaker type cup, even now he is better from an open top one. He never took to a bottle. He sometimes choked a bit with solids, not much, but choking or gagging is fairly normal for children with CP, probably as a result of not having any feeding issues he has never 'failed to thirve' and is now slim, but average (very) nearly 3 year old. so far he has not had any seizures (thank god) but again it's very common.
My Ds is happy, bright and whie I do find it hard sometimes with all the carrying and therapy I feel that with the right support now he could lead an independent life, and I hope I'm not kidding myself!

oops - sorry that was so long, also cross posted with NMC. As far as I know it's unlikely for it to be CP if the MRI is clear but the severity of the CP does not seem to be linked with the severity of the damage seen on the MRI .

Hi HairyMaclary,

who has told you that if an MRI is clear it's not CP? I didn't think that was the case - a child can have severe damage according to an MRI, but only "mild" difficulties, and vice versa.

My DS2 had an MRI when he about 5 months old (they can do it before one, even though it did require a GA), and it was clear, but we still haven't been told that he doesn't have it.

He's going to have another one, and a muscle biopsy, and spinal tap in the next few months, along with endocrine tests.

It's hard not knowing, I have stopped looking things up, there is no point second guessing the drs - we've had our concerns about DS2 for almost exactly a year to the day now, and still no definite dx other than delayed visual maturation and GDD. He's not crawling or walking but has started to kind of cruise the furniture a little bit.

Tracey it's hard isn't it? I hope you can get some answers soon.

thank you for sharing, am just really confused dd had her mir at 3 months old because of sezures !and now the nurses know this and that it was clear, i feel like we never goning to dx proply for dd

hi mm22bys hoe are you going not seen you around for a while! i too try not to go looking as i always think the worse its just like i said i thought we finily got an answer

trace I will answer you on ttr

Sorry mum22boys I didn't make that clear. As far as I understand it damage and severity do not necessarily go together at all, as you say it can be severe damage and mild affection or vice versa. However I understood from conversations with dr's, but not by asking outright, that a completely clear MRI meant that CP was ruled out. I may be wrong, as I say I haven't asked that direct question as it's not been applicable to us but that's what i understood.
How are you getting on?

I thought the same as you hairlymac, clear MRI is no cp. My ds has a bad mri picture, prognosis was terrible at birth BUT he is so midly affected aged 7 , the docs can't believe it. Only big prob is incontinence.

Hi MABS, I seem to be chasing you, I asked you some questions about schools on the independent schools thread. Does your son walk? If so at what age? sorry for the hijack Trace 2.

Hairymclary - will answer you properly tmro. can u cat me? then i'll answer any question you like at all! Yep he walks, he was 3 when he did, now he's 7, he has no learning difficulties and is quite academic.Where are you?

Hi trace, i haven't read all the posts so sorry if i am repeating what others have said, but i really don't think the nurse can dx CP so quickly.
DS2 has mild CP, autism & learning difficulties & although it was always a consideration/suspected it wasn't formally dx'd until he was nearly 3, largely because so many other things can present similarly to mild CP.
The most important thing is that your dd gets good physio input now regardless of dx.
DS2 has never had an MRI so I don't know what would show up there.
My friends ds with hydracephalis(sp) & epilepsy had awful MRI results & was dx'd with CP as a baby but although has had severe delays with his physical development is running around & does not have CP.
I think unless severe it is very difficult to dx in a baby.

Don't forget 2shoes, you have to pull a dx from a doctor as they don't like to be wrong, and are scared of being sued

Don't forget 2shoes, you have to pull a dx from a doctor as they don't like to be wrong, and are scared of being sued

sorry that was to trace2