countrygal
30-03-2007, 16:26
Hi everyone,
I posted a reply in serious health Issues about my DD.
If anyone is interested in reading it I have posted it in the hypotonia topic.
Unless someone here can tell me how I can cut and paste my story to place it here because it was to long for me to re write in this thread and I would like to share my experience with others here.
Thanks
JO
Hi everyone,
Firstly can I just say that hypotonia isnt actually a diagnosis. It is a condition.You can have syndromes and other diagnosed conditions and the things related to these are symptoms or conditions.
My DD whilst having a routine check at 7mths old was found to have hypotonia. At first the peaditrician thought she may have muscular dystrophy. She had an MRI at 13mths old which showed to be normal. She also had an EEG at about 2yrs old which also showed normal.
My DD didnt sit up unsupported until she was at least 18mths old she didnt crawl on all fours until she was 3. We have had extensive genetic testing and bloods,urine for lots of different syndromes and everything has come back negative or normal.My DD is going to be 5 in June and she is undiagnosed.She has Global Development Delay.She also has possibly Epilepsy and she has an Intellectual Disability.
I have seen a few different peads and they all have had this wait and see game as far as my DD goes. They didnt know if she had a muscular related problem or a neurological one.
They think that her disabiltes are because of a neurological problem they just cant find what it is. She is an enigma to them.
Forward to today. She doesnt talk but makes lots of noises and sounds and we are using PECs which is going great guns.
She doesnt walk but can stand for about 3 seconds on her own. She wants to walk but it is such a struggle to put everything in motion. She can climb up on anything and she can pull to stand but thats about it. She now has a Rifton gait Pacer walker that was kindly donated to us through a local Lions club which she loves using both at home and at Kindy. She wears her AFOs (ankle foot orthotics) whilst using the walker. She can cruise holding on to the lounge.
To look at her you would just see a normal looking and cheeky girl. Sometimes because she has the low muscle tone in her face she often looks as if she has just woken up or is very tired.
Her hypotonia has been assessed as moderate to severe.
We get services through Disabilites SA and we see a OT,speech and physio.
My DD still drinks out of a babies bottle we are trying a sipper cup but it has been a very slow process.
She still needs help with feeding but she eats finger food style and she eats anything.She loves her food.
She is still in nappies as well and TT looks to be a long way off still.
She needs help getting into the bath and out and I do quite alot of lifting getting her in and out and up and down from things.
The scary part now is that in July she starts school. She will be going to a Special School.
The best thing we can do with our kids is to give them lots of love and support. Dont ever think you are not doing enough for them because you are. My DD has certainly turned my world upside but she has made me a better person as well.
My phyiso sees alot of kids with hypotonia and with Global development delay and yes she said most of them are walking and talking. She thinks in our case that my DD disabilty is somehow realted to a neuro problem.
Thanks for taking the time to read my ramblings.
Goodluck with your children.
Cheers
JO
I posted a reply in serious health Issues about my DD.
If anyone is interested in reading it I have posted it in the hypotonia topic.
Unless someone here can tell me how I can cut and paste my story to place it here because it was to long for me to re write in this thread and I would like to share my experience with others here.
Thanks
JO
Hi everyone,
Firstly can I just say that hypotonia isnt actually a diagnosis. It is a condition.You can have syndromes and other diagnosed conditions and the things related to these are symptoms or conditions.
My DD whilst having a routine check at 7mths old was found to have hypotonia. At first the peaditrician thought she may have muscular dystrophy. She had an MRI at 13mths old which showed to be normal. She also had an EEG at about 2yrs old which also showed normal.
My DD didnt sit up unsupported until she was at least 18mths old she didnt crawl on all fours until she was 3. We have had extensive genetic testing and bloods,urine for lots of different syndromes and everything has come back negative or normal.My DD is going to be 5 in June and she is undiagnosed.She has Global Development Delay.She also has possibly Epilepsy and she has an Intellectual Disability.
I have seen a few different peads and they all have had this wait and see game as far as my DD goes. They didnt know if she had a muscular related problem or a neurological one.
They think that her disabiltes are because of a neurological problem they just cant find what it is. She is an enigma to them.
Forward to today. She doesnt talk but makes lots of noises and sounds and we are using PECs which is going great guns.
She doesnt walk but can stand for about 3 seconds on her own. She wants to walk but it is such a struggle to put everything in motion. She can climb up on anything and she can pull to stand but thats about it. She now has a Rifton gait Pacer walker that was kindly donated to us through a local Lions club which she loves using both at home and at Kindy. She wears her AFOs (ankle foot orthotics) whilst using the walker. She can cruise holding on to the lounge.
To look at her you would just see a normal looking and cheeky girl. Sometimes because she has the low muscle tone in her face she often looks as if she has just woken up or is very tired.
Her hypotonia has been assessed as moderate to severe.
We get services through Disabilites SA and we see a OT,speech and physio.
My DD still drinks out of a babies bottle we are trying a sipper cup but it has been a very slow process.
She still needs help with feeding but she eats finger food style and she eats anything.She loves her food.
She is still in nappies as well and TT looks to be a long way off still.
She needs help getting into the bath and out and I do quite alot of lifting getting her in and out and up and down from things.
The scary part now is that in July she starts school. She will be going to a Special School.
The best thing we can do with our kids is to give them lots of love and support. Dont ever think you are not doing enough for them because you are. My DD has certainly turned my world upside but she has made me a better person as well.
My phyiso sees alot of kids with hypotonia and with Global development delay and yes she said most of them are walking and talking. She thinks in our case that my DD disabilty is somehow realted to a neuro problem.
Thanks for taking the time to read my ramblings.
Goodluck with your children.
Cheers
JO