anyone elses child with hemiplegia?

[thisiswhataluv]

ds is nearly 8 and has left hemiplegia in both his arm and his leg he also has some degree of a learning diffucuilty however noone can say for certain

it would be great to talk to other parents of children with hemi...

Hi my 9 yr old daughter has left hemi, she was born with the cord tightly around her neck and had a fit the day after. She is at mainstream school and has found reading and maths quite hard but has a lovely disposition.

hi, thanks for replying..
my son suffered a stroke when i was pregnant with him...so we knew from the stsrt that he would be born with cerbral palsy, at the timethe extent of the cp was unknown, however he started reaching milestones when he was a baby, and when he was around 2 his physio said he had hemiplegia...
my son also goes to a mainstram school, he has just went into year 3, he scored well below the "normal" results in his sats, he has a mild learning diffuculty, although this has never actually been said to me.. he needs support eith every subject at school and gets an assistant from salt go in for an hour a week, he also receives speech and language therapy in 6 week blocks.
he clashes with his 2 sisters aged 2 & 3, he is not disruptive however causes mayhem at home
how affected is your daughter? my ds is moderately affected, it is both his arm and his leg...
he wears a leg splint however this causes a lot of discomfort and pain to him he would rather not wear it

On the milder side, her leg is more affected than her arm. She has had two operations already, tendon transfer on her arm and muscle lengthening on her leg, both of which have been successful. She will probably have to have another one in the future to straighten her leg because her foot turns in when she walks and she trips on it quite abit. She does swimming and horse riding every week which I think help her, does your son do any activities?

activities-sadly not...
we signed him up to do taikwondo but his concentration skills are very poor so he wasnt paying attention and after 6 weeks he said he no longer wanted to go ...
he then went to beavers 2weeks ago but he found the pysical side of the activites hard to keep up with and again his lack of concentration means he needs 1 2 1 guidance throughout the session...will persevere and she how this goes...
we were offered 1 2 1 swimming lessons throught th the local special school but he has a great fear of water so got really emotional and panicky in the pool despite 1to1 support so again asked to stop going after 3 month...
we have taken him swimming lots to build up his confidence but we also have 2 dds aged 2 & 3 so this often proves hard..
well done to your dd for swimming/.horseriding, you must be so proid
i just wish my ds could find something he is interested in
the good thing is that my ds is quite confident at school and has many friends, he is known as the class joker , which im rather pleased at

Thats great he is confident and has lots of friends at school. Have you heard of the website Hemihelp, it has a message board whre you can speak to other families with children with hemi.

Yes we are proud of her, she recently got her 50 metre badge for swimming and has just started cantering at riding (gulp).

Does he get much Physio or OT? My daughter's OT stopped when she started school and we see the Physio school holidays.

Secondary School is looming on the horizon for us as she is now in year 5, which I'm really nervous about.

i actually joined hemihelp yesterday,and paid the annual subscription, so hopefully i will be able to meet up with others in my area

josh sees his physio once every 4-6 weeks,
ot signed him off last year as they were satisfies with him, however my concern was around fine motor skills so they took big buttons in to school these buttons were bigger than a £2 coin
when in everyday life do we come across this size of button??
i have asked for another referal back there as he still struggles with buttons/laces/zips etc.
he is on the waiting list to be seen in the apostural clinic , which i had never heard of, but his physio said the consultant there is really keen to see my ds.he also has involvement from salt- they go into school for an hour a week,
an ed psych is also involved as is the lit team, and also he has 6 week blocks of speech and therapy ....
think i have covered it all

does your daughter have many friends?
has bullying ever been an issue? this is my greatest fear
i hate bullies!

Hi, Can't really contribute but woundered if I could ask you ladies for your opinion.
I have wondered about this with my son but he has never been diagnosed. I first noticed his eyes looked a bit odd when he was born and that his left pupil didn't dilate properly. He's 3 now and they're are still the same. It's called horners syndrome and we have no explanation for it. Then when he started to clap he would bring his right arm accross his body to his centre but his left arm would flap about around his side. Similarly when he started to move he commando crawled and would use his right arm and leg to push/pull himself along while his left arm and leg we're pretty useless. However, by the time we eventually got an appointment with physio he was more or less clapping normally etc. We also noticed his left leg was a bit strage when he first started walking as well but again with time this dimished. He has appeared to me to have a weakness on his left side with his each major milestones but then manages to overcome it to some degree after a while.
Generally he has been late with his milestones, has the concentration span of a gnat, has some issues with social skills and has poor speech both delayed and a bit disordered. He's very hard to understand and looks to me like he can't control his tougne very well.
Sorry for the long post but are they symptoms anything like what your children experieanced and if so how did you all get diagnosed?

Thanks

thisiswhataluv - she has a handful of friends both in and out of school. She hasn't been bullied but has been excluded, not sure if that is the same as bullying?

You sound like you live in a better area for therapy than we do, everything is a battle to try and get what we want.

Willmum - my daughter was diagnosed when she was 13 months. She had a MRI scan which showed the damage to the right hand side of the brain, thus leaving her with a left-sided hemiplegia. If you are worried why dont't you ask for one? Please bear in mind you can sometimes have symptoms but a clear scan and so you have to just treat the symptoms. Hope that helps but if there is anything else you want to know please ask.

pilates im not really sure of bullying is the same as exclusion, imo i dont think it is. many children choose to play with same 2-3 children throughout there school years, others like to play with different children..
1 boy in my ds class has played with the same child since nursery at school and at home, they asked my ds to play with him and he agreed but this was because at the time he was going through a "ben10" phase and these 2 boys were ben 10 mad, as soon as the phase wore off for my ds, so did that little friendship this has proven to me that it works both ways, my ds had a chance to carry on playing with these children but chose not to iykwim...
all children can be included or excluded at anytime..
my ds prefers to play with girls because they arent as rough as boys, and he also likes to play with children who are a few year younger than himself ..
i am in north east, i feel the services we receive are okay but could be better...
i am in contact with a family who live in south africa who have a son with hemi, and there doctors etc sound fantastic [envious]
where abouts are you ?

willmum i was 28 weeks pregnant with ds when they told me he had a bleed to his brain and had caused a stroke, i always knew he would have cp, but didnt know the extent untill he was a few month old, with hemi 1 side of the body is affected and doesnt catch up with the other side of the body iyswim...
however
my ds was slow at reaching milestones and als has poor concentration skills, he also has speech and language problems
like pilates said i think the only way to get a diagnosis is with an mri scan, you really need to ask for one and get to the bottom of this and hopefully get a diagnosis

Thank-you we are hopefullly being refered to another paed, I will discuss it with them.

Hi, I have a support group set up on facebook for parents of children affected by hemiplegia. I would be delighted if you are able to join us. We have over 100 members in just over 1 month! - please email me on [email protected] Thanks, Gill x

My son has hemiplegia.

He is 4.

He is affected on his whole left side.

Being brief now as I have to go- but I'll see if there is more I can help with later x

Hi my son is four and a half and has hemiplegia to his right hand side. He also has a learning disability but manages well in the dual placement we have secured for him. He attends mainstream three days a week and specialist provision two days a week.