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Infantile Spasms PDF Print E-mail
Monday, 07 July 2008 16:13
G'day again folks.  Sorry for the lack of update, but unfortunately Beth has been in hospital again, as some new seizures started - infantile spasms.  We have been out for a week or so now and I've just got around to updating things - I got interrupted by these new seizures while starting to post the updates last time!  Anyhow, I've completed the new seizures section which goes into details about what has happened throughout this time.  Please check it out.  Hope to put some more stuff up here soon.  Thanks to all that have been praying for Beth and us, it has been a very difficult time.
Seizures Started PDF Print E-mail
Monday, 09 June 2008 16:16

Hi everyone, the last few weeks have been quite stressful, and I havn't had the time to update things here.  Some folks would have seen some updatesand questions via the lissencephaly loop.  In the days leading upto 19th May Beth started looking up and to one side and staring fixedly.  At first we were not sure whether she was just taking an interest in something (she likes looking at patterns of light), but as this behaviour repeated and she was not as responsive during it, we started suspecting it was a form of seizure. 

Last Updated on Thursday, 05 March 2009 19:00
Family Photo Shoot and General Update PDF Print E-mail
Monday, 05 May 2008 16:18

G'day again all.  It's been a little longer between updates - both because dad is so busy at work and also because things have settled somewhat now into a bit of a routine.  We have hit a milestone though - Beth's just coming upto 6 months now!   The last couple appointments with physio and speech have been uneventful, and they are please with how Beth is going for the moment.

The main reason for this update is to share with you something lovely that some friends of ours arranged for us as a present - a family photo shoot!  A professional photographer (Janine Kaye Photography) came to us, and did a two hours session, and got some great photos.  We were so happy with the results and I've added some of these into the photo page for you to see. 

Last Updated on Thursday, 05 March 2009 19:01
Genetics PDF Print E-mail
Thursday, 01 May 2008 16:20

Sorry for the lack of "news" updates of late, most of the updates have been in relation to Beth's therapies etc, so I've put the details into the developmental update section.  I'm going to have to revamp the website to put that into a main menu or something....  soon...

However, speaking with our neurologist by email, it appears that some of the genetic testing results have come in.  We don't know what they are yet, we will be seeing him on the 15th of April, but he is going to refer us to a geneticist as well.

Vision Australia also came out and did a more formal assessment of Beth's vision, and the result was good in that they believe she has vision in the normal range for a four month old, but there are early indications that there could be some cortical visual impairment.  For more details see the developmental updates section.

We also need to take Beth for her second round of immunisations, we have put it off a couple of times as we've been busy but are getting to it this week.  We are going to give her some panadol in advance to ward off any fever as she did get a minor one the first time around, and fever is one of the potential triggers for seizures.

Paed/Neuro Results PDF Print E-mail
Monday, 21 April 2008 17:36
Recent visits to the paed and neuro have both been positive - both are happy with Beth's progress, that she is gaining a little better head control, tone is a little better (she is less "floppy") and that she is still gaining weight consistently.  That she is still not having seizures is a good thing as well, and we pray this will continue.  Of course both the paed and neuro are stating that the odds are against it, and they will occur sometime.
General Update PDF Print E-mail
Monday, 21 April 2008 16:19

Hi there folks!  Firstly, thanks to those that have found our website and made contact with us!  It's been great to hear from your all, and also to meet up with some other parents and relatives looking for information.


Beth had her second round of immunisations a little while ago now, and did have a little bit of a reaction to them.  We decided to give some panadol to her beforehand, as last time she had a bit of a temperature and high temperatures/fevers are something that is associated with triggering seizures.  She was a grumpy little girl for a few days there, not her usual self, and one of the injection sites on her leg came up with a nasty red lump that took a couple of weeks to go away.  Thankfully, she's all back to normal now.


We also visited the paediatrician again, he checked her over and was happy with her progress overall.  The problem is that it is difficult to understand just how well she is doing because the expectation is the she won't do well... which is a little annoying. Really brings home something we've heard now a number of times, that as parents, we will become the ones that understand Beths' progress and abilities the best; Doctors look at the condition and may not expect much progress and in some cases "give up" and not even encourage it, on the basis of they don't want to raise false hopes.  We are of a different mind set though - we are going to hope and pray and encourage Beth in every way, and we just know she will surprise us all more than we think!

Last Updated on Thursday, 05 March 2009 19:02
Observations with other children PDF Print E-mail
Tuesday, 01 April 2008 17:36
Jo has been going to a new mother's group in the area over the last two months and it is becoming more and more evident that Beth is developing more slowly  than other children.   Her head control is not as good as other children her age and even older, although it is improving and isn't too bad.  Other children are making more distinguished sounds and movements, and seeing further as well.  But the good news is that Beth is very happy and doing very well, and is yet to have any seizures or feeding problems.

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