Seizures

Our daughter recently began experiencing seizures and periods of temporary blindness. We are completely new to this type of problem and we are certainly not in a position to offer any advice. This is a very steep learning curve and we will try to keep this page updated as time moves on.

All we can say is that this is most definitely not something that every autistic child will experience. If any of our readers can offer any reliable information regarding any known association between autism and epilepsy / seizures please could you let us know through our contact form, on the left of this page.

Zoe began having fits in November 2008 and they are gradually increasing in frequency, with one recent fit being followed by a period of temporary blindness. To date, Zoe has had EEG (Electroencephalography) scans, which have both proved inconclusive.

Below is a small list which shows the sequence of events that we went through when we took our daughter to hospital for an EEG scan. This may help other parents who are preparing for such a scan.

What is it like to have an EEG scan?

• Zoe needed to visit the hospital
• The doctor and nurses talked to Zoe and reassured her that she would be fine and she would cope.
• The nurse measured Zoe's head with a cloth tape measure. She did this several times, in different places
• The nurse then made lots of marks on Zoe's head with a red crayon. This did not hurt.
• The nurse then placed some sticky stuff on Zoe's head in lots of places. This did not hurt.
• The nurse put some little round things on her head with wires on them. This was OK
• The nurse attacked the wires to a white box with lights on it.
• Zoe wore this for about 20 minutes and then the nurse removed the wires and the sticky stuff, this did not hurt.
• The nurse said that Zoe had done really well and that we were finished.

Some points for parents to consider.

We took a rag doll with us and asked the nurse to attach some of the wires to the doll so that Zoe could see what was going to happen to her. This could work just as well with an action figure for a boy or a teddy bear. The nurses may not be experts in the field of autism and as such it is wise to be prepared and ready to speak up so that your child experiences the least anxiety possible during the scan. The main point for us was that we made sure that the nurse spoke directly to our child, to tell her what was going to happen. This was very important.

Zoe went on to have a portable "Ambulatory" device fitted which she wore for 48 hours on the 10th of June. Unfortunately this also proved inconclusive, so we are no further forward with finding out what has been causing these seizures. Zoe has subsequently has a full MRI scan with an MRA scan being completed at the same time. These have also come back without finding any cause for the seizures.

We have met with our consultant and we are all baffled by this problem.