Heelssss
Well-Known Member
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
desperate for help with 5 yr old *human* daughter
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waruikazi
Legendary
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.
Oh man, had chills reading that... Maybe i'm epileptic.
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.
Oh man, had chills reading that... Maybe i'm epileptic.
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sunny_girl
Not so new Member
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*
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*
moosenoose
Legendary
Good thing you're not after reptile health advice 
...I would have told you to see a vet.
...I would have told you to see a vet.
Danielle-S
Active Member
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........
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........
user 31898
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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.
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.
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
varanophile
Active Member
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.
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.
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
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
shea_and_ruby
Well-Known Member
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
Fantazmic
Very Well-Known Member
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
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
B
Bluetongue1
Guest
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
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
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...
"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...
waruikazi
Legendary
Good luck. Glad you are getting somewhere.
user 31898
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Thank goodness you are getting some answers. Good luck with the tests.
hrafna
Well-Known Member
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!
J-A-X
Very Well-Known Member
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.
Nighthawk
Very Well-Known Member
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!
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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