Hemiplegia-Cerabral Palsy

[maddys_mum]

Hi,
I found out a couple of months ago that my daughter has hemiplegia. She is currently having physio and occupational therapy. She will be having a MRI at the end of Feb.Does anyone have a child with this? If there are any other mums out there that would like to share with me their stories,I would love to hear them.

Thanks

[xkwzit]

Hi MaddysMum

Hugs to you both. I have not got direct experience, but have done a quick google and found an Australian hemi parents website. They've got some resources there (including a chat room). Not sure if there as nice as we are :D , but they'll hopefully have loads of info and support for you.

And apologies if you've already found them.

The link is http://www.hemiparents.org/

[maddys_mum]

Thanks for that. Ive had a look aty that site but there isnt many members. Thanks for your suport.

[maddys_mum]

Thank you mrs casper, I really appreciate it! :)

[morgan04]

My daughter is now 4 with left hemi. I noticed lack of movement with her kicking had an mri at 4 months and a bleed was found in her brain. She has physio, ot, speech but is doing well at kindy and making friends. my greatest fear is being teased at school as she is quite emotional just like her mother!:rain:. I am crying just thinking about her. She has regular botox treatment and wears an afo on her left foot. If i can help let me know.

[morgan04]

please email me if needed. vanita.wade@internode.on.net

[DoulaRobyn]

My brothers girlfriend, who is 27 has hemaplegia. She leads quite a normal life and she has some spacicity (excuse the spelling) in one of her hands and one of her feet. She also walks with a bit of a limp since her last grand mal seisure. She is a lovely girl and I think with a bit more confidence in her body she would be a much more abled woman.

Since her last seisure she has been put on different medication and she has not had another fit. Her energy levels are higher too and she seems alot happier in herself.

I think what I notice is the most hard for her is that she has to relearn how her 'new' body works after a seisure. For example, since her last fit she wont try to tie up shoe laces or cut her food with a knife because she thinks she can't. I believe that she can, but just differently before. (I have a disability that is degenerative so I understand this to a certain extent).

She doesn't seem to have been affected long term mentally from the last two fits (she had two big ones in a space of a year but has gone for 15 years previously without having any fits, most of her fits were as a baby), she does however have a time period after a fit where she looses the ability to talk but her speech has improved now.

My brother and herself seem to have a great relationship and the hemaplegia does not get in the way. It does make for some challenging times, but then, we all have challenging times in our lives dispite being disabled or not.

Not sure if this information was helpful to you or not, thanks for letting me talk about her (in a nice way of course), I have never heard of anyone else having this. She says that hemaplegia is a form of epilepsy, is it actually cerebral palsy? - I will have to find some more info on this, her parents don't like to think there is anything wrong with her, I think that if they were more informed and also educated her better she would deal with life in a much more positive way, I think she tries to hide that there is anything wrong with her at all. She has a lovely personality, I hope that she becomes more secure in the body that she has and how it works.

I wish you and your daughter much happiness and health, enjoy your little one and spend alot of time laughing, that is my favourite cure :goodvibes:

[naiwen]

Hey morgan04, there are a few mums on here in the special needs section, you are welcome to come in and say high any time!

[micksteraus]

Hi,
I found out a couple of months ago that my daughter has hemiplegia. She is currently having physio and occupational therapy. She will be having a MRI at the end of Feb.Does anyone have a child with this? If there are any other mums out there that would like to share with me their stories,I would love to hear them.

Thanks

:) I am 45 years old, and I have a form of Hemiplegia that is called Familial Hemiplegic Migraine (FHM). I have had the symptoms since I was 10. My father, his mother, her father had them. My sister has them as well as my oldest son (who is 18). I have seen where some believe that Hemiplegic Migraines are a type of Cerebral Palsy, but most of the experts that I know, do not believe it is. I do not believe that my type of FHMs are related to Cerebral Palsy. In 2004, I had a DNA test done at Griffith University that determined that I have a mutated gene on the 19th chromosome, which results in me getting the FHM. Subsequently, my father, my sister, my two sons have also had the DNA test. My youngest son, who does not have the mutation does not exhibit any FHM symptoms. He does not have Hemiplegic Migraines. The tests that my family have had done were done either in Honolulu or at the University of Pittsburgh, PA (USA).

I have also had two strokes as a child (one at 11 and another at 12) and was treated at Children's Hospital in Columbus, Ohio. In 2005, I started exhibiting seizures which after extensive research and treatment (we lived in Canberra at the time) we moved to Ohio and was under the care of neurologists at the Cleveland Clinic who determined the seizures were the cause of soften tissue (that came about because of an Arterial Vascular Malformation - AVM, which was likely the cause of my stroke(s) when I was 11) becoming irritated. Since then I have been on Leviteracetam (or Keppra is the manufacturers name) and have not had any seizures.

I have an average of two FHMs though a year, which brings on paralysis on one side of my body, and generally starts in my feet. The mutation on the 19th chromosome inhibits the calcium in transmitting "electrical" impulses to various parts of my body which brings on the paralysis. Generally, after about 60 minutes the paralysis goes away and the headache comes on and lasts (in decreasing amounts) for about three days. I have functioned with my FHMs in many different jobs including the military, and I am very athletic which I believe helps.

One of the best things that I can suggest (I know your initial blog was several years ago) is to be sure of the diagnosis and the treatment. While medical staff, doctors, etc are extremely knowledgeable, not all of them are "world-class" and only you and your daughter are really going to be the "experts" with what is happening. If you have any questions, I do live in Australia now and can be reached on my email address (sean.itconsultants@gmail.com) or via this blog. Hemiplegia study is a passion of mine, and while not a medical practitioner, I would be keen to help provide any insight to you or others.

For the medical experts that I saw in the US, the neurologist with the migraine specialty at the Cleveland Clinic told me there was nothing that could be done for the mutated gene (chromosome 19) except to treat the symptoms that come on. As for the neurologist who was the seizure specialist, he put me on the Keppra and have been on since with no seizures. I hope I can be of help in any way.