Hello Ladies!
I've replied over here a few times but haven't posted too much in a while-but thought it was time to catch up and say hello-and ask for some advice

My lo is the youngest of 3-but the other 2 are now 10 and 12 and it is o different this time. Lillith is very nearly 14mths and changing everyday! She is the absolute center of the entire families life-she really does bring a breath of fresh air into our house! She is very much our special baby, she has diagnosed on the 7th January with Albinism, this year has been one of many highs and lows and surprises. We have had a wonderful report recently praising how well she is doing and now she is developing as she should-we are so proud!

This brings me to advise... Lillith has an EEG tomorrow-has anyone dealt with this-and can anyone please help me have some idea of how to keep her calm!!

Thank you
Lydia xxxx

Hello hun,

About the eeg, my daughter has had about a dozen of these. She has epilepsy, and the eeg really isn't too bad. The hardest part is getting them the sit still while they put all the little stickies onto her head, but they usually have a couple of nurses in to play and distract them while they are recording. I must admit I have always used bribery,lol, and the very first time, I made a bit of a joke of it and told her I'd let her put them in my hair while they did hers. They were kind enough to let her have a try playing with a few spare wires. I hope it all goes well for you today. Good luck and let us know how you get on.

xx

Hello!
How are you? That's made me feel a bit better-I'm very nervous about today-hoping it goes well though! We have a follow up on the 18th So by christmas we should know what's going on.

She has a similar test on Friday to test her vision and responses to get the best idea that we can to see what she can see. I think maybe she'll protest more as she may have an idea as to what's coming!!

Just need to find my way to Birmingham city hospital for that one!!

Thank you for the message xxx

Hi,
She was a star-didn't cry at all... though there was just me and the lady doing it-who annoyed me constantly!!! She called my lovely girl-dressed in a pink stripy jumper and pink trimmed jeans HE several times-hummm I think the notes weren't read!!

Then promptly started waving things to attract Lillith's attention- I had to point out that she is visually impaired-seeing anything more than 3ft away (unless its as big as a person) is not something she can do!!!

So all in all happy the baby did not get very upset-but came home utterly drained and very uspet at having had to point out things to people that could have taken a few minutes to read notes-even if they only check the gender of the person they are dealing with!!!!! ggggrrr

Thank you for the lovely messages-here we are in the waiting game!!

xxxxxx

Hello!!
Just thought I'd do a quick update on here! We had the results of this EEG and they came back normal...however the dr was not convinced. So last week I had to take her to another EEG after depriving her of as much sleep as possible. (I gave her 3-4 hours in the end).
Results are hopefully tomorrow, will post news-but doesn't look too good at the minute.
Lydia xxx

hope you get good news hun xxxxxx

Hope you get some good news, it is so stressful waiting for results, let us know how you get on xxx

Hey! Thank you again for the support ladies!
The EEG results were good again, but I'm afraid she has now been put on anti convulsant medication and diagnoised with abscence seizures-a form of epilepsy.
I unfortunatley am off to work-really not in the right frame of mind but life goes on! We have got some does fiddling for the next few weeks to get her settled and hopefully the meds wont make her too drowsy once they are sorted.
Lydia and Lillith xxx