Jordan is my second child she has an older sister, Tahlia. Much like Tahlia she is a fighter.
Jordan was born with the cord wrapped twice around her neck. She was a terrible blue colour. In her first hour of life she had a chest x-ray and a cranial ultrasound. Everything was apparently normal. Up until four and a half months she progressed in much the same way as Tahlia had done. It was then that she had her first seizure. I had just finished feeding her some apples when she curled up into a ball. My brother, being a nurse, picked her up by the ankles and 'beat' on her back, until she returned to 'normal'. It was a Tuesday.
Jordan repeated this episode the following Saturday, only this time
her lips turned blue, I thought she had chest problems and was going to
die. Jordan was lucky enough to have a pediatrician witness her third and
future seizures. He diagnosed Infantile Spasms but sent us to a specialist
hospital to be sure. Here she was put onto Tegratol and Vitamin B12 with
no effect. Her MRI gave us no insight. Which I am sure is good! Jordan
had her first EEG which confirmed IS. She was put onto Sabril, 500 mg twice
daily. Sabril controlled her seizures straight away, however, she would
sleep
23 hours of the day. In an attempt to wake her up her morning dose
was reduced by half. Only to have her seizures return a week later, Worse.
Jordan was then put on Prednisolone - 16 mg once a day, in addition to
the lowered Sabril, just before Christmas, 1996. Pred stopped her seizures
straight away. For three months Jordan stayed at this dose. We then started,
very slowly, to reduce her dose. On the 7th June Jordan completed her pred
course! However, it seemed Jordan was having Myoclonic seizures. Thank
God this was not the case. After two regular EEG's and a video monitored
EEG it appeared that, some how, these seizures were behavioral!!! However
at the time it seemed important to have these 'seizures' under control
and Jordan was put onto Epilim with the occasional dose of Rivatril (which
only seemed to make the 'seizures' more frequent).
A month after Jordan started her pred treatment we flew to Sydney (Aust)
to see a Chinese
Herbalist. He did a little accupressure on Jordan's feet, knees and
elbows and it seemed to wake her up. Finally my child could focus on me,
and babble. It was not until a week later that we realised that the
combination of prednisolone and 'sleeping' seized ALL of Jordan's muscle.
The herbalist referred us to Mr. Yu., who helped Jordan with Point Percussion
Therapy. That is with gentle tapping, pinching and massage to stimulate
her muscles. Before we saw Mr. Yu. Jordan was six months old and could
only roll over one way. One week after we started to see him Jordan could
roll over both ways, and three weeks after she could roll from stomach
to back. At ten months Jordan started to sit. At eleven months she could
'commando' crawl and could get into and out of a crawling position.
Jordan is now 21 months (April 1998). She got the hang of crawling at 13 months and started saying dad, mum and Taa (for Tahlia) at 15 months. She is learning sign language, and has been since she was 12 months old. She can now tell me, with sign language, when she wants 'more' of something, her bottle or her dinner or if she had 'finished'. She can 'cruise' around furniture and stand unsupported. However, she cannot yet walk. We are hopeful that she will before she is two. (Mr. Yu hopes in the next 3 - 4 weeks.)
Jordan has been seizure free since December '96 and off Epilim since January just gone. However, she has been off the Sabril since August '97, against her Neurologists advice! He wanted her to stay on it for at least a year after her last seizure, I thought it was 'numbing' her mind. I'm sure it was the right choice. We haven't looked back anyway!
I was told right at the start to expect Jordan not to have much in the way of fine motor skills, nor very good speech. Not only can Jordan talk she can pick up pieces of fluff, pencils, cat food!, basically anything you or I could.
Firstly I want to say thankyou to my mother Karen Strong - Jordan would not be where we have her without her gentle pushing! We also want to say thanks to Mr. Yu and to Jordan's pediatrician, Dr. Lowther. There are so many more people that have helped us financially and emotionally. Thank you to you all.
Kaitlin's
Page 
Eddie's Page 
Melissa's Page 
Epilepsy
Forum MISC
(Mums of Infantile Spasms Children)
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