Post by kate2000 on Sept 22, 2011 2:03:47 GMT -5
Hi everyone,
My name is kate and i am a married mummy to two beautiful girls - Bethany is 3 years old and Naomi is 9 months.
Just under 2 weeks ago naomi was diagnosed with AHC and suddenly we have been opened up to this huge unknown world of rare conditions!
Here's a quick run down of our story to date. Naomi was born a healthy 8lb baby. When she was about 4 months she was grisly for a couple of hours and then suddenly her left arm went totally floppy. Contacted GP who sent us to hospital - they thought she had dislocated it so did xrays but they were normal. Sent us home with the condition we would return if her arm didn't start working again, but they were really stumped as to what it was. After 10-12 hours her arm came back to life - clumsily for half an hour and then fine.
We thought no more of it and put it down to a one off.
Four weeks later, exactly the same thing - though this time the right arm. Then another week passed and the same again on the right side too.
She then started having episodes of severe projectile vomiting, lasting anywhere from 5 minutes to 2 hours (our cons tells us this is linked)
So we were admitted to hospital when she was 7 months for MRI, lumbar puncture, bloods and then an EEG at outpatients. All came back normal.
We were diagnosed with AHC by our neuro consultant who has treated a child in birmingham for the same condition.
Then last week - on thursday evening, Naomi had a full body weakness which meant she couldn't sit up by herself - she kept flopping over. We put her to bed and in the morning she was able to sit up again. However she had a big problem with feeding all weekend as she had really bad tongue thrust reflex that kept pushing her spoon and bottle teat out. She was so frustrated.
Over the weekend she also had episodes where she would sit still and make grunting noises accompanied by twitching/jerking movements of her arms and shoulders. The consultant is wondering if these are small seizures.
So we are going to have a repeat EEG and start on flunarizine.
This is where we are at. I currently work three days a week (Am off sick at the mo while i get naomi sorted) - but our neurology consultant feels naomi would be better managed at home where she can have proper sleeps (in nursery she only sleeps half an hour at a time, whereas at home she sleeps anything up to 1 and a half hours!). So i have decided i will go onto night duty (i'm a nurse) so that i can look after naomi during the day.
Everytime before an "episode" happens with naomi, she is grisly and just not settled for a couple of hours. We only every counted episodes as limb floppiness which lasted for a substantial period, but there have been many occasions where her arm has just hung limp for 5/10 minutes.
Ok, so that is our story! any words of wisdom or similar experiences much appreciated. Also for any UK people, I am applying for DLA - do you have any idea if we are entitled to it? She doesn't have episodes every day but when she does have one, she needs a lot more help than my 3 year old did at this stage.
Thank you so very much
kate
My name is kate and i am a married mummy to two beautiful girls - Bethany is 3 years old and Naomi is 9 months.
Just under 2 weeks ago naomi was diagnosed with AHC and suddenly we have been opened up to this huge unknown world of rare conditions!
Here's a quick run down of our story to date. Naomi was born a healthy 8lb baby. When she was about 4 months she was grisly for a couple of hours and then suddenly her left arm went totally floppy. Contacted GP who sent us to hospital - they thought she had dislocated it so did xrays but they were normal. Sent us home with the condition we would return if her arm didn't start working again, but they were really stumped as to what it was. After 10-12 hours her arm came back to life - clumsily for half an hour and then fine.
We thought no more of it and put it down to a one off.
Four weeks later, exactly the same thing - though this time the right arm. Then another week passed and the same again on the right side too.
She then started having episodes of severe projectile vomiting, lasting anywhere from 5 minutes to 2 hours (our cons tells us this is linked)
So we were admitted to hospital when she was 7 months for MRI, lumbar puncture, bloods and then an EEG at outpatients. All came back normal.
We were diagnosed with AHC by our neuro consultant who has treated a child in birmingham for the same condition.
Then last week - on thursday evening, Naomi had a full body weakness which meant she couldn't sit up by herself - she kept flopping over. We put her to bed and in the morning she was able to sit up again. However she had a big problem with feeding all weekend as she had really bad tongue thrust reflex that kept pushing her spoon and bottle teat out. She was so frustrated.
Over the weekend she also had episodes where she would sit still and make grunting noises accompanied by twitching/jerking movements of her arms and shoulders. The consultant is wondering if these are small seizures.
So we are going to have a repeat EEG and start on flunarizine.
This is where we are at. I currently work three days a week (Am off sick at the mo while i get naomi sorted) - but our neurology consultant feels naomi would be better managed at home where she can have proper sleeps (in nursery she only sleeps half an hour at a time, whereas at home she sleeps anything up to 1 and a half hours!). So i have decided i will go onto night duty (i'm a nurse) so that i can look after naomi during the day.
Everytime before an "episode" happens with naomi, she is grisly and just not settled for a couple of hours. We only every counted episodes as limb floppiness which lasted for a substantial period, but there have been many occasions where her arm has just hung limp for 5/10 minutes.
Ok, so that is our story! any words of wisdom or similar experiences much appreciated. Also for any UK people, I am applying for DLA - do you have any idea if we are entitled to it? She doesn't have episodes every day but when she does have one, she needs a lot more help than my 3 year old did at this stage.
Thank you so very much
kate