left hemiparesis -- cerebral palsy

[JJ]

Just got an email from my sister saying that the pediatric orthopedic specialist has tentatively diagnosed her daughter with left hemiparesis which is a form of cerebral palsy. She said that they've scheduled an appointment with the pediatric neurologist to see if she concurs, but it might be a while before the appointment comes up. I've tried to ring her, but she's not home, so I don't know more.

Does anyone have any info on this? The symptom that started this was the fact that my niece (7 months) wasn't using her left hand at all. That's the only symptom at the moment.

Hi jj,my 2yr old son has mild diplegic cerabral palsy,only effects his inner thigh muscles,so it is different to your neice's.
Try this website www.scope.org.uk. I am sure this will help.

I recommend scope too, they have a helpline with lovely people attending it in case you want to chat.My son has spastic diplegia cerebral palsy, and there are a few other mums on her with cp kids too. Bests wishes to you, your sister and her daughter.

Thank you guys so much. I checked out the website before ringing her and it definitely calmed me down a bit. It sounds like she has a great orthopedic specialist handling it -- he just wants the neurologist as a second opinion and for any additional suggestions. She has another appointment with him in 4 months to check how things are going, although she's to ring him immediately if any deterioration occurs. The OT people have been out and done their assessment and will start OT soon. Thanks again (and I'm sure my sister thanks you for having me be a more calm and informed concerned sister).

My dd (5) has moderate left hemiplegiga, i have found alot of help and support from a group called Hemihelp, i think there site is www.hemiihelp.org, hth.

Sorry its Hemihelp with 1 i not 2,

Thanks ariel! That's a great website. I haven't heard from my sister lately, but am sure things are progressing. I'll send her the address now.

An update and a request for any additional information that anyone might have. The following is kind of cut and pasted from an email my sister sent me:

They saw the pediatric neurologist last Friday. They didn't have an appointment until July 28, but the neurologist wanted to see her earlier -

Basically, she's worried that my niece either has a progressive brain injury (lesion, tumor, enlarged blood vessel) or progressive spinal injury. At this point, they're hoping that she 'just' has C.P.

On Monday, she'll have a brain MRI - this will show the Dr. if she has any of the above brain injuries. If the MRI is negative, then she'll have a spinal MRI at a later date (they're not doing them at the same time because it involves a lot more anesthesia to do both than just the head and because the Dr. thinks that it's much more likely that it's in the brain than the spine because it involves her hand). If the MRI is positive then she'll refer them to 'her husband, the neurosurgeon'. She said not to change their travel plans - if the MRI is negative, then they have a little leeway on getting the spinal MRI done.

If both MRIs are clear, then she'll have the diagnosis 'spastic hemiparesis, origin unknown'. Technically, she said, it wouldn't be cerebral palsy because C.P. describes the origin and because it wasn't noted in a level 3 ultrasound and because nothing unusual happened at birth, it wouldn't technically be C.P. (those are the two origins of C.P.) But basically, for all intents and purposes, it's the same thing. (spastic hemiparesis is also a C.P. diagnosis). That's another reason why she's worried about lesions, etc. Because she thinks this is something that happened after she was born (again, because it wasn't noted at birth or during the level 3 ultrasound).

The neurologist recommended upping the OT to 2x/week -- she's doing 1x/week now and also recommended adding aquatherapy, but my sister doesn't know if her health plan will cover it (just a note: one of her relatives will). My sister is very very happy with the neurologist.

Thanks for any and all info. I'm a bit scared to look things up at the moment. My sister is holding off on doing it until after the MRI, also.

Just to report back that my niece had the MRI today. It showed a stroke in the right side of the brain that has negatively affected use of the left side of the body, but has not negatively affected cognitive or social functions (so the neurologist believes). Given that she is a baby and the high plasticity of the young brain, the prognosis is optimistic. Treatment-wise, the most important thing right now is to continue therapy so that there is no loss of physical ability to use the left side of the body. (those were my brother-in-laws words, more or less)

Thanks again.
For completeness, the Hemihelp site is at : www.hemihelp.org.uk and there is an American site that I found helpful (my sister and family live in the US), the Children's Hemiplegia and Stroke Association .

Thanks once again.