desperate for help with 5 yr old *human* daughter

[Darlyn]

Good luck Adandj, hard yards ahead but you are here seeking solace and comfort
thats, a good thing. We are here to support you.
Hang in there buddy and focus on the positives. Because of your stance you have advanced a lot further and
much more quickly than you would have otherwise. Kudos to you!

 

[Sezzzzzzzzz]

Ajandj my heart goes out to you and Sara. I hope tomorrow brings you the answers you need! Big hugs Hun. Stay strong and get some rest. X

 

[Tsubakai]

If you are given an option, push for the MRI. They can do it under general anaesthetic (not as scary as many people fear)to make sure they get proper images and get much more information than a CT will give you. Even if you have a CT its likely they will suggest a MRI anyway.

 

[Renenet]

Ajandj,

I am glad to hear you have a diagnosis of the symptoms and that you are now on the way to discovering the cause. It seems like you have an excellent team of medical professionals around you, which helps no end in a case like this.

Thinking of you, Sara and your family.

 

[ajandj]

she can't have a general. She had her tonsils out in november and we nearly lost her because of a reaction to the general.

Thankyou everyone, for all the well wishes and support. I know this is a reptile forum but l am comfortable here and l have made new friends over the past months. Again, thankyou

 

[Bluetongue1]

ajandja,
The doctors should be able to tell you whether the teeth grinding in her sleep is part of whatever condition she has. It may, therefore be corrected with whatever treatment she undergoes. If it is not related, it does need to be corrected. Otherwise it will premature wear the enamel of the teeth and she will have major dental issues further down the track. See a dentist about it and he will design a mouth guard that she puts in at night and stops the teeth surfaces coming in contact. it usually ends up breaking the habit and the grinding stops altogether, so the mouth guard can be dispensed with.

A minor consideration at the moment, I realise. Something to worry about down the track, if need be.

Blue

 

[shea_and_ruby]

hope you get some answers this morning, sending positive vibes to you and your daughter xx

 

[starr9]

My heart go's out 2 you both! Hope you got some sleep and today brings better news and outcomes!
Big hug's for you both!!!!

 

[Defective]

DONT PANIC....your doctor should also get an EEG on her because migraines are also a type epileptic seizure....read the info i put up about Alice in wonderland syndrome a few posts back....i'm an epileptic that knows more than an epilepsy specialist and know all the supports for each state.....i'm glad that you have a reason...it is also very apparent that i watch too much Royal Pains and ER.....this won't change.

 

[Darlyn]

How is everything going?

 

[shea_and_ruby]

any news hun?

 

[Nighthawk]

Hope you guys are ok!

 

[Darlyn]

Can we get an update?
Hope everything is okay.

 

[SperO]

they should hopefully check her ears as well problems with ears can cause dizziness

 

[redlittlejim]

ummm could be sleep walking, if she doesnt rememeber any of it and doesnt seem worried the next day. some people sleep walking problems are so bad they can go driving, have sex, go to work do anything. its crazy some of the things, and the next day not rememeber anything. they even hold complete conversations

my bad i didnt see it was 4 pages

 

[Fantazmic]

I havent been in for a few days

How wonderful to finally hear a good GP story (in my line of work I only ever seem to hear about lazy GP's).

I hope everything is OK. Remember you are doing everything you can and whatever happens, as I said in my previous post your daughter will know you did everything you could to help her and that will always stay with her.

Please update us with whatever happens,

Where are you based. I am in South East Melbourne. If there is anything I can do to help you just PM me.

Elizabeth

 

[ajandj]

well, the last few days have been hell. Been in and out of hospital. Finally, some help.
Sara had the fast things happening and it progresses to big and small. Then screaming at the man stomping in her head. The man counts to a million and laughs at Sara cause she is crying. From there it went on to no recognising family members and friends she played with a few days earlier.. Really scarey stuff.
After spending hours at the hospital and the stupid doc treating me as if lm nuts. Sent us home after giving her nurofen. Next day things were worse than ever. Got in to see paeds and played him recordings of the "episodes" of talking to the grumpy man in her head, the screaming and everything. He had us at the hospital in minutes and did an urgent CT. Admitted her into hospital. The results came back clear so therefore no seen tumor. As he was examining her 30 minutes later, she had another episode and he witnessed it for himself... thankgoodness.
Anyway, as it stands they say they believe she is having "Occipital Lobe Epilepsy" which is bringing on attacks of Alice in Wonderland.
She is booked into Monash to have a sleep deprived EEG and hopefully that will give a definate diagnosis. Once we get to that point and the results are back, she can start on anti convulsive medication. Unfortunately we just need to get thru the next few days because if she starts the meds now, it will mask the results of the EEG.
Thank god for good doctor.. There is light at the end of the tunnel - very dim at the moment but it is there.

 

[waruikazi]

Good luck mate. Sounds absolutely horrible to be going through. Wishing you the best.

 

[user 31898]

Thank goodness its not a brain tumour. I've been wondering whether you have had any answers. I'm glad you are getting somewhere. Keep strong until the EEG and the results, your nearly there!
My son just had an EEG (not sleep deprived) and we're waiting for the results. Have an appointment on the 5th April. He has not been having anywhere near the symptoms your daughter is going through and its still a bit scary waiting. I can't imagine the hell you must be going through.
Big cyber hugs and good luck sending your way.

 

[Defective]

well, the last few days have been hell. Been in and out of hospital. Finally, some help.
Sara had the fast things happening and it progresses to big and small. Then screaming at the man stomping in her head. The man counts to a million and laughs at Sara cause she is crying. From there it went on to no recognising family members and friends she played with a few days earlier.. Really scarey stuff.
After spending hours at the hospital and the stupid doc treating me as if lm nuts. Sent us home after giving her nurofen. Next day things were worse than ever. Got in to see paeds and played him recordings of the "episodes" of talking to the grumpy man in her head, the screaming and everything. He had us at the hospital in minutes and did an urgent CT. Admitted her into hospital. The results came back clear so therefore no seen tumor. As he was examining her 30 minutes later, she had another episode and he witnessed it for himself... thankgoodness.
Anyway, as it stands they say they believe she is having "Occipital Lobe Epilepsy" which is bringing on attacks of Alice in Wonderland.
She is booked into Monash to have a sleep deprived EEG and hopefully that will give a definate diagnosis. Once we get to that point and the results are back, she can start on anti convulsive medication. Unfortunately we just need to get thru the next few days because if she starts the meds now, it will mask the results of the EEG.
Thank god for good doctor.. There is light at the end of the tunnel - very dim at the moment but it is there.

if you need anything if the results come back as positive for Occiptial Lobe Epilepsy, just send me a PM. i'm an epileptic since the age of 3yrs old and i know every emotion a child goes through...coz i've been through them.
just make sure to contact the Austin Centre...they are amazing and are making new discoveries each day. they've really helped me thats for sure. YOU are not nuts, You dont have mad mothers/Fathers syndrome so dont let any doctor tell you that!!