Really interesting to read this... My friend is currently looking for a diagnosis for her 7mth old, who she says "blanks out". They have tested her for epilepsy and at this point she's negative for that. She has had all sorts of tests... Nothing conclusive. I'll update if I hear anything...
We've been given a referral to a paediatrician but he's got no appointments free until march. I knew it would be a big wait. My GP thinks it is definitely absence seizures but he hasnt had any experience with them so he's sent me on to the paed. He doesn't Seem to think they will medicate unless they are affecting her learning or functioning in spme way. I'm hoping we get a cancellation but I guess it's just a wait. Thank you for you comments and advice. I will update you as we progress.
thats interesting they dont medicate. DJ has"smaller" GM and is medicated. Epilium and also keppra - they both keep him "stable" as we found out tryingt weak him off the leppra under peads advice.
I know from the ones DJ has our pead explained it like some one renching the antenna out of the TV - and the fuzz you get, and you "lose" part of the program and take a while to get it back and it might not match exactly (re-wireing the neruological pathways in the brain) look into the epilepsi foundation they'll be able to talk you though managent of them and what to do if your DD has a GM you're doing all the right things hun.
my LS is right elipi fits tend to be baught on by being tired/stressed (DJ was the first one but thats genetic)
Does your GP know you will be waiting until March? They may be able to phone up and ensure they can't do anything earlier.
When Phoebe was a baby we were told we'd need to wait 3-4 months for our appointment (regarding a possible neurological condition too - turned out all clear though). I reported back to the GP, she rang the paed's rooms and all of a sudden we had an appointment that week!
For something like this I'd be making sure the GP knows you are waiting so long. It could be that she shouldn't wait that long and the paed may force the booking forward. Good luck with it all. x
We ended up speaking to a friend who is in the neuro industry and she said that we definitely shouldn't be waiting until march. She is still so young that it could be affecting her developing brain so we ended up going to emergency and were seen by a paed who referred us to the neurologist at the children's hospital. We have an EEG appointment on Thursday. The doc in emergency confirmed it was epilepsy but can't say it's absence seizures only until they get the brain activity analysed. I'm very nervous but fingers crossed it will be easy to address. The frequency and severity of them have gotten worse this week so I'm glad we decided to take action now rather than wait.
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you're doing all the right things hun.
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