# desperate for help with 5 yr old *human* daughter



## ajandj (Feb 8, 2012)

Ok, l am at my wits end.. I have a 5 year old daughter named Sara. Sara was a really good baby, only cry when hungry blah blah.
She grinds her teeth.. and l mean seriously grinds them to the point l get up and roll her over to stop her, but that's not what l need help with.

Last year, just before kinder l found that Sara needed glasses. So we went ahead and got them and they really do help her. About 9 months ago, she kept have these*attacks* (for want of a better word) where she would get this terrified took on her face, start really crying and put her hands in front of her eyes. When i asked what was wrong all she would say was that things were fizzy.. her hands in front of her eyes was so she could focus (so i found out, and fizzy was actually her way of saying she was dizzy). If she was walking, she would grab whatever she could to stop herself from falling over. I took her to the eye doctor and nothing. I took her to the GP and nothing. Anyway eventually it stopped.. she went from 3-4 *attacks* as week to completely nothing.

Over the past few days, Sara keeps saying things are getting bigger and then smaller. It will happen for a few minutes and then she's right as rains. Didn’t seem to upset her, didn’t seem to stop her from doing anything. It was like it was just a passing comment, wasn’t upsetting her at all. It happens whether she is wearing her glasses or not. It happens in the day as well as the night.

Last night was shocking... I put her to bed and she came screaming into the lounge room about 10 minutes later.. Eye's like dinner plates.. Gasping to breath.. Absolutely terrified..

"Mummy, mummy. Help me.. I'm having a bad dream.. Bigger, Smaller... Help me"..... I was so scared.. even just thinking about how scared she was, is making me cry now. For an hour, she just cried in my arms, wouldn't let me go.. shaking, l mean really shaking. It took a good 1 1/2 hours to calm her down to the point she could talk to me. Again, the only way she would explain it was that things keep getting bigger and then small. Everything, things in the background.. for ground. Moving things *like me*, tables chairs.

Whilst sitting on my lap, she says "mummy, mummy it's happening again.. i'm having a bad dream.. crying, screaming, shaking.. 
**Oh i meant to say, a few hours earlier l gave her panadol because l thought it may have been a headache/migraine, but it didn't help.**

I ended up giving her a sedation dose of Phenergan and it's knocked her out. And before anyone gives me a hard time, i have only given it to her in the past due to food reaction, hives and bad mozzie reactions.

Can anyone shed any light? Anything will help.. I do have an eye appointment for her for tomorrow with a new eye doctor (not happy with the one we have been going to) and i have a GP appoint for her on Friday..

I really don’t know what to do.. I’m actually really scared that something is really wrong with her and l’m going out of my mind.. I’ve been up all night, google’ing just trying to figure out what l can do to help her…


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## slim6y (Feb 8, 2012)

Try this page - I am no doctor that's for sure. But I have known people who suffer (my grandmother) from 'vertigo':

When The World Starts Spinning

Otherwise, you've probably already checked similar stories I am sure.

Actually, not sure this helps either - but I googled 'vertigo in children' and this page popped up:

DIZZINESS AND VERTIGO: General Information sheets: NEVDGP


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## shea_and_ruby (Feb 8, 2012)

you poor thing how terrfying for the both of you. so was last night from an acutal dream or she was awake and seeing things getting bigger and smaller? if you are not happy with the dr's answer, always get a second and third if need be. trust that mothers intuition. so sorry this is happening to you both, keep us updated xx


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## Pythoninfinite (Feb 8, 2012)

You need the assistance of specialist medical professionals. I understand your need for reassurance, but I don't think a reptile forum is the place to get the help you need.

Jamie


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## Fuscus (Feb 8, 2012)

Getting medical advice from the internet is a very dangerous thing to do


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## Pythoninfinite (Feb 8, 2012)

If I was you ajandj, I would have this thread deleted this morning and seek an urgent doctor's appointment TODAY, and get an urgent referral to a neurologist. Do not seek advice on serious medical issues here. I can't be more blunt than that.

Jamie


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## Nezikah (Feb 8, 2012)

I personally wouldnt bother with the eye specialist. If things are changing sizes etc it will be more to do with the messages sent to the brain not the eyes directly.

I hope all goes well for you, children can be very scary! My daughter was born deaf and the doctors told us it was brain damage till she was 3!


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## dragonslair27 (Feb 8, 2012)

Hello Ajandj
I hope the new doctor can give you some answers. My heart goes out to you both. I have children too and I would have done the same thing ask for advice and got on the internet also there is nothing wrong with Phenergan, I have it to in my med cupboard (for allergies) and again done the same thing  Maybe ask the doctor for a CT scan and a MRI scan???? Once again I hope you get some answers today. Good luck, thinking about you both and keep us posted


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## ajandj (Feb 8, 2012)

that info has helped, thankyou


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## Pythoninfinite (Feb 8, 2012)

Good luck ajandj... please treat this as urgent.

Jamie


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## ajandj (Feb 8, 2012)

l'm not here asking for medical advise... l a merely asking if anyone has had the same thing... 

I have an eye appointment today and l just got off the phone to my GP and he is going to see her today.

I do know that getting medical advice from the internet is danderous and un wise. My sister inlaw does it and all of a sudden she has all the symptoms known to man. 
I do not understand my daughter then she says that things get bigger then small. If l could solve that part of the mystery, l think l would be half way there.

sorry if my response sound harsh and defensive but l've been awake for over 24 hours, l've spent hours trying to calm my daughter so l'm tired, anxious and really scared. 

This morning my daughter has no memory of getting out of bed, no memory of have the *YUK* medicine (phenergan with a chocolate frog chaser) or bad dreams.. nothing... i guess that's good in the sense that she's not worrying about whats happening


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## jahan (Feb 8, 2012)

Your in Melb, I would be taking her to the RCH TODAY.


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## starr9 (Feb 8, 2012)

I think you are doing the right thing taking her to a different Eye place and a different GP. There could be a number of different things that could be causing this, and the only way to find out is testing for different things. When you go to the GP make sure they do a Neuro test and Id be asking for an allergy test 2 (Vertigo can be caused by some sweetners found in toothpaste, juice etc) 

When you see the eye spec. you can tell them whats been going on and they can send you on to specialists/send info on to your GP and work 2gether to find out whats going on. 

Good luck and please let us know how you go!


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## Tassie97 (Feb 8, 2012)

Poor lil thing


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## Kyro (Feb 8, 2012)

I am a mum of 6 & if the best advice I can give you is get your little girl straight to the emergency department at your nearest hospital. Going through your local GP can take weeks to get answers compared to a decent hospital with the capabilities to test your daughter & find out what's going on straight away. I truly wish you both luck & hope they find out what's going on


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## Tsubakai (Feb 8, 2012)

Just to reiterate, she needs specialist referral today. Your best bet is going to be through RCH where she can be seen by a paediatric neurologist.


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## Defective (Feb 8, 2012)

it sounds very similar to Alice in Wonderland syndrome....
Epilepsy is a cause of this and i urge you to take her to the emergency department where they should get a neuro consult down...here's some info
Alice in Wonderland Syndrome


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## Sezzzzzzzzz (Feb 8, 2012)

Good luck ajandj, hope your baby girl is ok.


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## Nighthawk (Feb 8, 2012)

I hope everything goes well for you both today ajandj. There are a few mums/dads on here who will be happy to be here if you need to vent in some down time if you need it


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## pythrulz (Feb 8, 2012)

Thats really sad for you even more so for your poor little daughter skip the eye doctor and take her to a childrens hospital hope that you can find the right help


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## Heelssss (Feb 8, 2012)

Hi ajandj, I would be breaking down walls and take your baby girl straight to emerency also, only place they will see you the same day without been given the run around like the local gp's do. All the best and chin up


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## waruikazi (Feb 8, 2012)

You definately need to go to a specialist, neurologist, child psych or who ever you can get into to try and work out wether something is wrong or if she is just having bad dreams. That said i'll share some experiences i've had.

When i was a teen i was crook in hospital with Athsma and i was overdosed on steroids. The result was a terrifying psychosis that came on and off for a period of months pretty heavily (still happen on occasion now). The psychosis i had was really weird and difficult to explain but i can remember 'bad dreams' frighteningly similar going on when i was about 3-4-5 years old and then again when i was 9-10. When it first started mum and dad had me in and out of docotors trying to work it out too.

The only way to really describe it is to imagine something that is really really tiny except it is giant at the same time. Say a grain of sand but the size of a house, yet still the size of a pin head and it has a mind of it's own and does evil things. But apocoloyptic kind of evil, like killing people you love etc. 

Your daughter saying big and small and being utterly terrified makes me think she is trying to explain something like i have, except she doesn't have the language skills just yet. And maybe, just maybe because she has been having eye problems and the way she is describing the bad dreams you have made a link between the two events when their may not be one there at all. 

Don't panic, go through your doctor or the hospital or whatever and see some specialists. I think you should consider a psych too.



Defective said:


> it sounds very similar to Alice in Wonderland syndrome....
> Epilepsy is a cause of this and i urge you to take her to the emergency department where they should get a neuro consult down...here's some info
> Alice in Wonderland Syndrome



Oh man, had chills reading that... Maybe i'm epileptic.


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## sunny_girl (Feb 8, 2012)

My son used to have night terrors all the time. He would scream, cry and hallucinate, say things were moving really fast and was absolutely terrified. He would Yell at me to stop, would cry for a while afterwards and then go back to sleep and not remember. One time he swore there was a black cat on his bed and wanted to know why. Its like he's awake but not coherent. My best friends daughter has just started having them too, same symptoms.

My son has never had problems with his eyes or been dizzy through the day though. 

Moving him while it was happeneing always made it worse, a cold drink seemed to help.. They are common and they grow out of it. 

I am hoping for it to be something like that for you. Beat wishes

Best wishes*


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## moosenoose (Feb 8, 2012)

Good thing you're not after reptile health advice  ...I would have told you to see a vet.


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## Danielle-S (Feb 8, 2012)

Sorry to read that you are going through this.

My only advice is to be persistant. One of my twins was unwell for months, nothing apparently serious. Went to the gp several times, and to emergency a few times as her symptoms persisted. After a while I felt like a mother complaining about nothing. It could be this, it could be that. Doctors are reluctant to run invasive tests on children, and understandably for good reason. My girl ended up having a seziure in Bunnings...very scary stuff...but enough to make the medical staff be a little more thorough. Blah blah blah....I wont tell you the rest, but I have a healthy 7 year old now.

So stick with it, go up there every day if you have to. Be strong........


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## tarzans_girl (Feb 8, 2012)

So sorry to hear this. It sounds absolutely terrifying. I hope you have managed to see a specialist. If it happens again get straight to emergency. It is better to get tests done when these "episodes" are happening or just happened rather than wait weeks/months for a referral from a GP as they may not get information from a test done weeks later to be able to give you a diagnosis.

I am currently waiting for a referral to a child neurologist and EEG for my 10yr old after a possible seizure in December and I wish I had just gone straight to the hospital then instead of the doctors.

If it happens again - go straight away to emergency please.

Good luck.


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## daz26 (Feb 8, 2012)

I have just got over vertigo it started maybe 2/3 times a week then I ended up in bed for 6 weeks and had all of that happening for the whole 6 weeks 8 weeks on still getting it 1 or 2 times a week but slowly going away you just have to wait it's all to do with the ears not the eyes


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## varanophile (Feb 9, 2012)

Hi Ajandj,

Based on the information you have given a few things come to mind, including many of those mentioned above. With little ones it is always difficult to get a good history of what is actually happening, esp if you see them after the symptoms have resolved (as with your GP). Seeing her during an episode would provide an important source of information, and would almost certainly narrow the list of potential diagnoses.

As many of the above posts have said I would get her to the emergency department, ideally in a children’s hospital. 

I’ve worked in emergency medicine for a few years now. With little ones, esp those under 5, we understand how difficult it can be to know if there is something really wrong or not. For this reason we are usually very happy to see them if parents are worried, and particularly if they are displaying potentially strange neurological signs. Generally if the parents think something is wrong we trust their judgement.

If further investigation is required, it can usually be organised in ED more quickly and directly. Most likely it is something benign, and if this is the case hopefully the least they can do is confirm this and put your mind at ease.


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## ajandj (Feb 9, 2012)

Thanks so much everyone for your well wish and support. It's really great to know that l cna "vent" as someone put it. As the info l have recieved has been really helpful.

We did go to get her eyes tested.. she was due anyway. She is long sighted in both eyes (one was worse than the other), her eyes are evening out and she has a squint in both eyes.Turns out that she neeed new lenses so i have organised that.

I went to GP, unfortunately my GP wasn't there but we did see another and he was great. He actually stopped and listened to everything l wa saying.. which alot of it doesn't make sense. He did reflexes, checked all the "normal things", ears, eyes, throught, reflexes etc. He spoke to sara about going to school for the first time and really made her feel comfortable (she doesn't really like men and gets very shy and unsure around people she doesn't know). He then asked her if she'd like to go watch TV in the waiting room with her brother.

Doc told me that he had another mum in there not too long ago with surprisingly similar story. He has refered me to a specialist and l have an appointment for next week but he was going to follow thru and see if he could speed up the appointment. He also told me that the other family found that their daughter was having a type of migraine but he made it ver clear at this point he was only guessing as not tests have been done and it's a little out of his *league so to speak*. As we were talking, Sara banged on the door and was crying, *mummy, mummy it's happening again...* Doctor checked her eyes and sat her down. He took a photo of her, because her whole face tends to completely change.... - l know that sounds weird but... it kind of contorts,i don't know.. just different..
After a few minutes she was fine again, happy and laughing. She went back to the TV room and doctor told me that he wouldn't be surprised if she was haing a seizure. It could be a form of epilepsy. We told me he would make a few phone calls and call me by lunchtime tomorrow.
I am soooooo glad it happened whilst we were there so he could see what l was trying to say. I'm not concerned of it being seizures or migraines at this point as no testing or anything has been done. I am just relieved, as l said, that he understands what's happening. I have to take her to A&E if it happens again thru the night.
I am actually almost 3 hours away from Melbourne so it's not just a hop and skip to RCH. If my doc hasn't got any good news by lunchtime tomorrow (specalist appoint) then i'll pack an overnight bag and head down to the city for a few day

Thanks again everyone


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## Kyro (Feb 9, 2012)

So glad to hear you found a great doctor & hopefully you will get the answers you need soon. Good luck & big hugs to you & your little girl


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## shea_and_ruby (Feb 9, 2012)

great to hear that you a found some one willing to listen to you. hope that she went well overnight and you all got some sleep


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## Fantazmic (Feb 10, 2012)

when I was a little girls about 3 years old I started counting things that wearnt there....I would look at the televison set and say look mummy six televisions and point at them and count them...it was because I had a turn in my eye and as my eye was turning away my vision was spreading because at that stage i still had vision in my eye. My poor mother got told she was watching me too much...was over worrying and an over protective mother...she persisted and persisted and finally our local P gave her a referral to Ruden Hertsberg who was the pioneer of eye surgery on squints just to shut my mother up Well he took one look at me and could see my problem and decided he could operate on me. I was very lucky he corrected my eye to 99 percent accuracy and it was only about 3 years ago that I had to wear glasses and I am 45. My mum also did a wonderful job of making me do my eye exercises and I cant thank that her enough for persisting because if she hadnt I would be blind in one eye. 

So keep going...you are so lucky that whatever it was happened in the surgery with the doctor.

If it was me....i would go to royal childrens hospital with a letter from the doctor confirming that he has seen the symptoms.

let us know how you get on.....fingers crossed it is her eyes and with all the advances in medicine they can do something for her like they did for me 40 years ago.

we are all thinking of you


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## Bluetongue1 (Feb 11, 2012)

*ajandj*,
First and foremost, you have done an excellent job as a parent under quite adverse circumstances. One of the hardest things as a parent is to remain cool, calm and collected when comforting a distressed child, when you know the source of that distress is due to some unknown thing very wrong with your child. Your natural instincts are to panic with alongside them with every fibre of your body. Instead, you have exercise amazing self control and give out a calmness that says "It's OK. Everything will be alright". While the reality is that you know it's not OK. 

I am really pleased that you actually had something go your way. Seeing a new GP who did not dismiss any signs and symptoms because he was familiar with your child was a great. And secondly, the short attack that occurred during your consultation. It definitely sounds very positive in terms of the doctor being supportive and proactive in referring it on to an appropriate specialist. First and foremost, as a parent, you want answers. Once you know the cause, you can deal with it and do whatever needs to be done.

It is apparent to me that your googling and your post here, was not to seek a diagnosis or a treatment. You were looking for a number of other things. You sought reassurance that whatever was happening to your daughter was not unique and unheard of and was likely to be treatable. Some simple reassurances to stop your mind and emotions from tearing your heart apart. I suspect you were also looking for feedback on your intended strategy for addressing the problem. You were given some clear advice there which you have taken onboard and will implement if needed. Without your post, that would not have happened. So you have done well.

As do others, I absolutely wish you a positive outcome. I also appreciate the emotional whirlpool you are being put through. Difficult as it is, I think you are coping really well mum!

Blue


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## Nighthawk (Feb 11, 2012)

I think Blue put it perfectly, that's exactly how I'm feeling for you at the moment as well.
My best wishes ajandj, and what Blue said


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## ajandj (Feb 13, 2012)

All l can say is thank god for good GP's. I saw mine and just said 2 words.. "help me"..
"This episode has been continuous since 3 am and it's now nearly 9pm. She's still awake"
He saw the fear in my face and we spoke for only a few minutes of what been happenning, between fits of hysterical crying from both myself and my daughter. He took me to the nurse room and told her to call paeds and get an earlier appoint. She got off the phone and called doctor back in and said that Thursday this week was the ealiest. I just cried and told him l couldn't get thru the next hour let alone days. He picked up the phone and called Paeds direct. Within 30 minutes l ws sitting in the paeds office waiting for him. His office is closed on mondays and he see's no patients.. well we are the exception. We taalked and he examined DD. He has diagnosed her with Alice in Wonderland Syndrome (AIWS). He says that she is having migraines as a symptom. He says that AIWS is generally caused by 2 main things (there are serveral more) glandular fever or tumour. We start testing tomorrow. He is contacting specialist tonight and will have answers 10am tomorrow on the best esting. We wants to do MRI but feels that she will not stay still enough but is hesitant about CT as the radiation is equal to 1000 xrays. Hopefully will know more tomorrow.

ANd no, i'm not handeling it at all. I can't stop crying and l'm terrified which is making Sara worse... she hears and sees my fear and is feeding off it. Hopefully tomorrow we will have good news and a plan of action.. JUst a few more hours...


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## waruikazi (Feb 13, 2012)

Good luck. Glad you are getting somewhere.


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## tarzans_girl (Feb 13, 2012)

Thank goodness you are getting some answers. Good luck with the tests.


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## hrafna (Feb 13, 2012)

i sympathise with your issue. my 5 yr old girl (when she was 1) was at a creche at the gym my wife went to. tripped while walking with a pencil and the pencil fractured her skull 1mm to the side of her eye and she needed neuro surgery. she was so lucky it did no eye damage and other than some scars that most can't see she is fine. but she is at a higher risk of developing epilepsy. she has forgotten all about the incident and is fine, but i can't help but remember the whole ordeal and have a fear that one day she will get epilepsy. it is so scary when it is your own child, esp when you are living through it at the time. but kids are resilient and hopefully when you get this all sorted out it will be nothing more than a bad dream for her and hopefully you too. be strong. for yourself and esp your girl. i wish you all the best and hope it gets sorted out asap!


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## J-A-X (Feb 13, 2012)

ajandj said:


> ANd no, i'm not handeling it at all. I can't stop crying and l'm terrified which is making Sara worse... she hears and sees my fear and is feeding off it. Hopefully tomorrow we will have good news and a plan of action.. JUst a few more hours...



my heart goes out to you and what you are both going through. 
you sound so exhausted physically and emotionally you need a good sleep ... Do you have any help, a partner, family member or friend that can stay with you and DD for a few hours ? they can watch your daughter while you catch up on some much needed sleep. when you know there is someone watching your little one you'll sleep better and will be able to cope with the rollercoaster so much better.


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## Nighthawk (Feb 13, 2012)

You're doing so well, something like this is extremely difficult to deal with and the fact that you're still putting one foot in front of the other and being there for Sara is totally amazing. It's hard enough seeing your child go through a bog-standard flu and temperatures, that helpless feeling can be so overwhelming.
You're handling yourself magnificently, just keep taking one step at a time and you guys will get there. She's being seen to, and that's the main thing.
Good luck!


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## Darlyn (Feb 13, 2012)

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!


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## Sezzzzzzzzz (Feb 13, 2012)

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


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## Tsubakai (Feb 13, 2012)

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.


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## Renenet (Feb 13, 2012)

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.


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## ajandj (Feb 14, 2012)

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


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## Bluetongue1 (Feb 14, 2012)

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


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## shea_and_ruby (Feb 14, 2012)

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


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## starr9 (Feb 14, 2012)

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!!!!


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## Defective (Feb 14, 2012)

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.


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## Darlyn (Feb 14, 2012)

How is everything going?


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## shea_and_ruby (Feb 15, 2012)

any news hun?


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## Nighthawk (Feb 15, 2012)

Hope you guys are ok!


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## Darlyn (Feb 17, 2012)

Can we get an update?
Hope everything is okay.


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## SperO (Feb 17, 2012)

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


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## redlittlejim (Feb 17, 2012)

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


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## Fantazmic (Feb 17, 2012)

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


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## ajandj (Mar 30, 2012)

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.


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## waruikazi (Mar 30, 2012)

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


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## tarzans_girl (Mar 30, 2012)

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.


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## Defective (Mar 30, 2012)

ajandj said:


> 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.
> ...



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!!


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## shea_and_ruby (Mar 30, 2012)

so sorry to hear about how bad things got with your daughter, must have been scarey  hope that the next few days and the sleep test go as well as they can, thanks for keeping us up dated xxoo


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## J-A-X (Mar 30, 2012)

I'm glad you're getting closer to helping your daughter, your entire family must be exhausted physically and mentally it been a heck of a journey, thank you for taking the time to update us, there are lots of members watching and hoping you're going ok, even of they can't think of anything helpful to say they're with you on this journey . I'm sending more virtual hugs to add to those you already have so you don't run out


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## ajandj (Mar 31, 2012)

thanks guys, l really appreciate your thoughts. Today was pretty okay in the scheme of things. Sara is holding in there. She has trouble understanding why the doctors aren't helping and why mummy can't make this bad stuff go away. It's gut wrentching. I can't imagine all things going thru her mind, l know how hard it is for me and it must be so much worse for her.. Tat's the part that really hurts. As parents our job is to protect our kids and to make things better when they are hurt. I know l am doing everything l can for her but it really feels like l have failed her.
My poor son... he's 11 and we've explained eveything the best we can. He got up this morning and ended up really crook. I think it's more stress than anything. I got him claned up and calmed down, and he looks at me and says "sorry mummy (hasn't called me mummy for about 3 years), i'm sorry to make things worse for you because l'm sick"........... oh man.... that just cut me to the heart. No kid should feel that way. It made me open my eyes and realise that over the past few weeks that l haven't been there for him. I feel so guilty. I know there are people out there that are doing it much worse than us, t just doesn't feel that way..
Look, sorry to ramble. As l said in the earlier post we have the eeg on monday, it's a sleep deprived one so she is to get up sunday morning as normal and l have to keep her awake til midnight.. yes midnight. Then she can sleep til 4 am, then be awake for another 12 hours, now that's going to be fun. Anyway, i'll get the results either the same day or the next.

Thanks again


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## tarzans_girl (Mar 31, 2012)

Oh that's just heart breaking. I can't help but cry. I just want to hug you all.


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## ajandj (Apr 4, 2012)

Had eeg done and now they say results will not be here for 4 days. Anyway, doc has now started Sara on anti convulsive meds (which l have to say are scarey in themselves) so hoefully she'll have relief very soon


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## Fantazmic (Apr 5, 2012)

Ive just caught up with the whole thread.

You poor girl, thank goodness you had thought to tape record an episode.

You must be exhausted.

I am hoping as well all are that this medication will give some releif for Sara.

Im also hoping they can give you some answers after the ordeal of having the EEG.

Just know we are all thinking of you.


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## CrystalMoon (Apr 5, 2012)

My thoughts are with you and your family, it is so gut wrenching when you cant fix your Babies. I hope the meds give her some relief and you can get some answers from the eeg 
Kindest regards
Crystal


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