DD has been diagnosed with hejmiplegia - I think.....

[Mollydolly]

Saw the paediatrician today with 10 month old dd2. He went round the houses a bit until I mentioned the words "cerebral palsy" to which he replied "well I wasn't going to mention that but since you have, I think it may be hemiplegia" Why? I am her mum and I want to know whatever it is so I can do all I can for her - I know in this compensation culture they are afraid of legal action but that's not reality for all of us. They are sending her for an mri scan at alder hey, but what he did say was that it seemed very mild - so mild he said that if I hadn't pointed it out to him and if he was seeing her for the first time for something else, he wouldn't have noticed it.I am stunned and cannot stop crying. A routine x-ray also showed a possible problem with her other hip (not the side affected by hemiplegia) a possible shallow socket, so we may also have to see an ortho surgeon. Bothy DH and I are stunned and don'tknow what to expect and since the appointment have come up with loads of questions like will she walk? Will she have any other problems? How mild is "very mild"? Does anyone have any similiar experiences or have any advice to offer?

[Piffle]

Molly - I know the initial shock of a diagnosis, however much you thought you were prepared for it, hits you like a tornado.
I must say the it sounds very good if the doctor said mild as they often do not like to get parents hopes up, so they err on practical side of caution.
My dd has a rare syndrome and we only got told at her last development check (she is 3.5) that they had diagnosed her as only being very mildly affected by it.
Some info/support groups here
\link{http://www.hemikids.org/\hemikids}
\link{http://www.hemihelp.org.uk/Leaflets/hbleaflets01.htm\what is hemiplegia}
I hope that as with many other Special needs, that the early diagnosis brings benefits for your dd.
I know nothing about hemiplegia but plenty about being frightened about the future with a new diagnosis
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[jenk1]

Hello Molly my dd was dx with hemiplegia in Jan of this year, she is 2 next week.

Iknew there was something wrong and it was me who pestered them for ages until they ran tests, x-rays etc and said hemiplegia in her left side.

I was worried that she wouldnt walk but she is doing, she will only walk a few steps and then she gets tired but she slowly getting there.

The Scope site is very good for info and the link that piffle has posted also.

Its a hard time when your child gets a dx so look after yourself and take each day as it comes.

HTH

[mrsdarcy]

My DD has had an MRI at Aldey Hey and they are really lovely there. I hope you'll feel you are in good hands.

[mumball]

Hi There, my DS was diagnosed with Right side Hemiplegic cerebral palsy from about 6 months. It is quite upsetting and frightening when you find this out, but take heart my little boy is doing brilliantly! He is a little star! took him about three years to start standing, and then shortly walking obviously not brilliantly, but independently. I think he walks brilliantly now though! Also talking can start later, as their bodies have to work much harder to reach their milestones. My DS didn't start taking until after he walked, but you can't shut him up now :o

There Is a website devoted to Hemiplegia which is \link{http://www.hemihelp.co.uk\www.hemihelp.org}

Basically hemiplegia is a weakness or stiffness down one side of the body, there are other problems also with hemiplegia, but the most noticable is the difficulties using the one side of the body, it can be either left or right side depending on the damage to the brain (I believe).

My advice would be to take each day as it comes, sometimes you get frightening information which worries the hell out of you, but sometimes these things do not come to pass. Joining hemihelp helps because the older children talk about their experiences which does help you. Also it has lots of advice and information.

My DS is in mainstream school, he is behind the other children, but he currently has about 3 girlfriends and lots of mates. He has problems walking for long distances and has a wheelchair for this, he falls over quite a bit (as balance is a problem with hemiplegia) and doesn't use his right arm much. But he uses his left arm excellently and manages to do things one handed. There are some Hemiplegic people that are gold medalists in the special olympics, one is a swimmer and another I know about is a show jumper.

I would also advise you to get tough and push quite a bit for things that you might need, sometimes questions need to be asked but unfortunately being new to disabilities you don't know what questions you need to ask and no-one volunteers information, not even the occupational therapists who are there to help you. Just keep asking even if you feel it's a daft question.

And finally and I know I don't have to say this just cherish them for being them and treat as you would a child without special needs.

My best wishes to you.

[mumball]

Sorry website is \link}http://www.hemihelp.org.uk

[mumball]

Mollydolly I have heard of the condition of her other hip, but cannot think of the name of it, but I am sure there is be a website for it. You need to get your health visitor to give you a early support family pack. You need to start writing things down, so you know what to ask about if you are not sure get the names of each diagnosis, the medical profession sometimes forget to tell you this things - you can also get financial help, disabled living allowance for one thing, also you can get a disabled badge for the car, depends on the area as to when, my social services were brilliant and gave us one straight away, but some wait until child is older, you just need to apply straight away for everything, then you will find out what is available to you. Your health Visitor should be able to help you if you need someone to come to appointments to help you make sense of what you are being told. I always thought I understood everything until we left the appointment and then I found I had a mental block, alot of the time we did come out of the appointment completely stunned.

Sorry I forgot to mention the above before.

www.hemihelp.org.uk/

[mumball]

Just so you know Hemihelp is a UK based Charity

[Mollydolly]

Thanks to you all for the advice and kindness. I think we were all the more shocked because dd has reached all milestones (up to now) quite early-rolling both ways at 4 months, sitting independantly at 5.5 months, clapping at 7 months etc. The paediatrician also said that up to now he can only see evidence of the hemipligia in her right arm, not her leg, which kinda through us a bit since I thought it would affect her whole right side from the get go. I am so confused and frightened right now, though, nothing seems to make sense.

[SparklyGothKat]

Hi, It took me 2 1/2 years to get the doctors to dignose my DS with spastic Diplegic CP. I mentioned it a long time before he was actually diagnosed.
It is 'possible' for a child to be affected only in one limb but its very rare. My son is mainly affected in his lower limbs but mainly on his left side, no two children with Cp are the same.
:)

[Mollydolly]

sparklyGothkat - thanks for that. I'm not too sure what the mri scan will show (if anything) but to be honest, I am just too concerned about my baby and how she is than what caused this. I just don't understand it either yet which makes things worse. The paediatrician also seemed surprised that she had reached all appropriate milestones (although she isn't crawling yet) is this usual with CP? I think I've been lulled into a false sense of security.

[SparklyGothKat]

My Ds met nearly all his milestones, he crawled at 7 months (flat on his front) cruised the furniture at 13 months, walked at 18 months. The only thing he couldn't do and still can't do properly is sit up, he W-sits, he has low muscle tone in his trunk and tight hips. He also has shallow hips sockets.

[SparklyGothKat]

he also has had 2 MRIs (the hospital questioned his diagnosis after Dd1 was also diagnosed with CP) The MRI will show any damage or changes. DS' MRi shows damage consistant with failure to grow during the 28-32 weeks of pregnancy, he doesn't have the normal damage seen with spastic diplegia. My Dd1 has PVL which is consistant with premature babies and spastic diplegia. DD1 has very mild CP. DS has modarate CP, but coupled with his hyperflexible joints it harder for him.

[Littlesoul123]

How is he