Any Ideas or advice appreciated

[Francis Asis]

My daughter (age 9) has this condition where she will be perfectly Ok then suddenly she gets this weird feeling inside (she can't really describe it properly) and everything seems far away. Then she starts to shake uncontrollably and feels really really cold. Her skin is red hot to touch like a radiator. I give her Calpol (infant paracetamol) at this stage and once that kicks in (about 20 minutes) her body starts to stablise and she's OK again except a bit upset. If I don't give her the Calpol it lasts a lot longer - 1-2 hours sometimes. I have to pile clothes/blankets on her and rub her all over to warm her up.

She usually goes through a phase of episodes lasting a few weeks. Then she can be fine for months again. When she is going through a phase her sleep is disturbed and she goes off her food saying everything tastes weird. Even her favourite foods.

Generally she is a happy, bright child, doing well at school. She has friends and no emotional problems. She has always had this problem but as she get older she is more able to tell us what is happening. She can also get really really hot but that doesn't happen so often now.

Has anybody heard of anything like this before? Can anyone offer advice? I will listen to anything as the doctors are next to useless.

Thanks in advance

Francis

[Rubyrose]

The bit where she says everything is far away sounds like Epilepsy.. but the rest doesn't sound like it.. although there is many different types. I would get her to a Neurologist and get them to run some tests and see what they make of it! xx

[jennibean]

Hi Francis, I don't know how much help this will be to you, but in the first part of your message you mention that your daughter says that everything seems far away. This sounds like something I suffered with as a child and have been suffering with again over the last few years, and as a child it used to scare me witless. It feels like my visual perspective goes all out of whack and whatever I'm looking at suddenly gets very tiny and seems really far away. If this sounds like what your daughter is telling you, this is known as Micropsia (it's also known as Alice in Wonderland Syndrome by some). I don't know much more about it, and doctors have been less than useless with me too, so I have just read up on what I could find online. I don't recall having any of the other symptoms you describe, but maybe what I have told you is something for you to start with. Try googling Micropsia and see what you can find out about it, if you think it may help. I hope you get some answers.

x

[gessoo]

It would seem to be a neurological problem - epilepsy or migraine springs to mind. Migraine can cause really weird episodes and can be different in children than it is in adults. I had childhood migraine and noone understood what was going on. The headaches only started in puberty. These are only thoughts - I have no medical training.

If you doctor is useless than I would definitely change and get a referral to a specialist.

[caz21]

Does she drop to the gound when she is shaking or is she stood? How regular is it happening?

It sounds very much like epilepsy to me too my brother has what are known as grand mal convulsions where he drops, goes rigid and shakes violently for a few minutes. Take your daughter to see a doctor who should refer her to a specialist for CT scans and blood tests etc. then they can probably give her some medication to control it! I doubt paracetamol will make much difference if it is epilepsy!

I wish you and your daughter the best of luck! xx

[Octavius]

I know you mention it in passing, but you really should seek professional medical advice.

Googling various bits and pieces, and receiving well meaning and informative posts on here may only serve to instill a sense of fear or dread in you and even lead to misdiagnosis and hence mistreatment.

In the meantime, you could perhaps look at the symptoms and keep a record of how often they occur, when (am/pm, after food, after drinking coke etc) and what your daughter describes is happening each time. Also ask family members if there is any family history of this, and please take all this gained info and knowledge with you and your daughter to the doctors.

[Octavius]

For the benefit of doubt, by mistreatment, I meant 'providing incoreect or wrong medical treatment/care'

[jno]

can I just back up what Octavius said... this really does sound like something a doctor should have a look at.

[Robinia]

Does the Calpol you give her contain sugar? Has she had her blood sugar tested?

If you're not happy with your gp find another, some are better with children than others. Hope you get it sorted soon, it must be a big worry.

[Bohne]

Have you been to a doctor about this?
My first thought also was epilepsy.

There are two forms, the one, that is more generally known with fits, and the other where people seem absent all of a sudden, but usually snap out of it after a while.

[purpose]

If your GP is pants - change your GP/get a second opinion/get passed on to someone who DOES have some idea.

Don't take 'no' for an answer.

And good luck in finding out what it is :0)

[Francis Asis]

Thank you all for your replies.

My GP did actually send her for tests for epilepsy and they were negative. We've seen a second GP who said it sounded like epilepsy until he saw the test results then changed his mind.

I didn't mention epilepsy in my original post as I didn't want to sway anyone's thoughts in one direction, so its interesting that everyone has said it sounds like epilepsy.

I was hoping that someone might have experienced something like it and be able to send us in another direction. However, it is still looking like epilepsy. The doctor has asked us to keep a log of occurances so after the six weeks are up for that I will definately ask for her to be retested.

Thanks again everyone.

I will leave this thread open in case anyone else can help.

Francis

[jackyp]

I have suffered with epilepsey since age 7 am now 52 and it sounds very much like epilepsey to mePlease dont worry to much if it is epilepsey all will be fine

[dyli795]

i had this as a child and i used to call them funny feelings . you get a feeling youv'e done something before and everything slows down . also a wierd feeling like a craving for something inside.heart beating fast. so hard to describe and very common. 3 of my children have experienced it. then gone on to have a migraine. i have asked my doctor and he thinks its deja vous, or a very very mild form of epilepsy. dont be alarmed by that as im 54 now and have never experienced more than what i described. i stopped these feelings at about 13.

[skyhi9921]

i have had epilepsy since i was 5 now 22 and it sounds like a seizure is she able to say anything whilst its happening if not i would say it is epilepsy although obviously seek pro advice