diagnosing CP

[jenk1]

i posted a while back that i thought dd has CP, the paed said hypotonia which was genetic.

I have since been doing loads of research into CP as hypotonia is not a diagnosis as ive been given to believe.

This week found out from a relative that both my nanna and great uncle had CP, it was called infantile paralysis back then.

They both walked with a limp and wore calipers, we have always thought that it was due to polio but no, the paralysis was there before the polio apparantely.

My dilemma is this:

DD has ALL the symptoms of mild CP and is using her right side more than her left, there is a genetic link(i always thought CP wasnt genetic but it says on the net that it can be)and at her last appointment with the physio, the physio herself told me that the diagnosis is NOT hypotonia so when i pressed her she clammed up.

How do i tell the paed my fears without seeming to tell him his job?

reading through the archives here it seems that paeds are reluctant to diagnose CP, i dont really understand why.

We have an appointment in 4 weeks and i want to present my case if it were to them as dd has been seen by a total of 17 doctors over the last couple of months and both me and dh think that they know its CP but arent saying.

If anyone can give me some tips id be really grateful

TIA

Hi there you wee detective you.... what about getting an appointment with an outside party? Perhaps if you had your child assessed by the bobath centre or one of the many conductive education centres, they maybe able to help you. Good luck.

whats the bobath centre? ive never heard of them.

Although I have 2 kids with CP and a first cousin with CP, CP isn't genetic. There can be a genetic link to sereve CP. We have been told that we have a genetic mutlifactorial predisposition to CP, which means that the brains of their brain are easier damaged than normal and if the sitiation is right (premature deliverly, breathing problems etc) then their brain will be damaged, therefore having CP.
I asked DS consultant if DS had Cp 6 months before GOS diagnosis him and was told NO.

Found this on the Scope site

Sometimes there is no obvious single reason why someone has cerebral palsy. Causes can be multiple and complex. Studies suggest that cerebral palsy is due mostly to factors affecting the brain before birth.

It is commonly the result of one or more abnormalities in the brain, before growth and development are complete. Some of the factors associated with the incidence of cerebral palsy are low birth-weight or premature birth, multiple births, asphyxia (lack of oxygen), infection or a cerebral bleed. Possible causes also include: infection in the early part of pregnancy; infection or accident in the early years of a child's life and abnormal brain development. There may also be a genetic link, but this is quite rare.

Hi Jenk,

hope you are well.

Dylan was first dxed with low tone cp, but the neurologist soon put that dx to bed by stating it isn't.
As mentioned at the last appointment with the pead, he stated that he isn't ruling out CP as he still firmly believes that that is dylans problem, but he has to go with what the neuro says as she is above him!!!!!!!!

Dylan has hypotonia as well as what they call severe GDD.
Dylan also has a lot of traits of CP, but i will have to wait and see what the genetisists say once they have assessed him and done all their tests.

I may add that it would be worthwhile mentioning your concerns to the pead and see what they have to say.

Speak to you soon, take care,

Butty.xxx

Thanks sparkly and butty

DD did have breathing difficulties at birth and ended up in a ventilator she also had quite bad jaundice, i have pictures and am going to show the consultant them to see what he says

brains of their brain lol sorry that should have read, brains my my kids, lol

brains of my kids, even, really should peview....

"What is Cerebral Palsy?
Cerebral palsy is not a disease or an illness. It is a disability caused by damage to the brain that can take place before, during, or in the early days after birth. There are many causes of cerebral palsy which include an infection while still in the womb, such as the pregnant mother contracting German measles, a difficult birth, a genetic disorder, a bleed in the baby's brain, or the baby's brain forms abnormally for no apparent reason."
Thats a quote from the Bobath website and it does mention genetic disorder.
www.bobath.org.uk

We have always went down the conductive path with my daughter, having had conductive education from 12 months onwards. But I know that both are worthy schools of thought, and may be able to help.

It is very rare for CP to be genetic, I know there is can be a link, but we were told that we were very unlucky to have 2 with CP and also me having a cousin with it. The chance is 1 in 400 births, which is quite high considering the number of births every day, so every day a baby is born with CP. Unfortunely for us, the chance of having another baby with CP is 1 in 10 so another baby for us is out of the question.

I am not being flippant or anything, in fact maybe I am just being stupid - but is the diagnosis the most important thing here?

DD was diagnosed with CP 6 months ago after lots of assessments etc during which nobody would give us a straight answer until they had made up their minds for sure. BUT we weren't too wirried about geting the dx - we had guessed what was coming - the point was that she was getting the help she needed and still needs from as soon as they realised there was a problem. Getting a dx didn't make any difference to her treatment and even her consultant made the point that we shouldn't worry about the label and just make sure we are doing all we can to help her along.

(Do you see what I am trying to say? Hope I haven't missed the point or upset anyone on here.)

CP can be genetic in rare cases, but it is a progressive degenerative form , ds2 was thought to have it at one point, but it turned out he didnt.

A diagnosis IS important, if only for the fact that it seems to open more services to you. Before ds2 was dx'd we had one session of physio a month, as soon as he had an official "condition", everything was put into action. I disagree that it makes no odds to the treatment they receive.

The bobath centre is excellent, you should try and get your health authority to fund you going there, or if you can afford it yourself, pay to go privately. We go once a year for 2 weeks every day. It is worth the hike.