*knock knock* can i join

[MissPiggy]

Hi all, i feel a tad like a phoney, as we're not completely diagnosed...but sometimes its nice to have a group of people taht'll understand even just a little.

Kayson is 28months.
We're currently under assessment from epilepsy...actually thats a lie, we've now been 'discharged' as the pediatrician is convinced these are just *daydreams*
these *daydreams* dont last very long, cant be frequent or sometimes you dont see them for a week. He'll stare off into the distance, and then when he's back to the real world he can be quite upset and/or disorientated...one hell of a daydream huh?!

We are also being kept an eye on by my Health Visitor as she believes he is on the autism spectrum...he doesnt like loud noises...other kids unless he knows them (he has two good little friends and will play around them...'with them' is not the right thing to say..he'll play and if the other joins in thats fine lol')
he HATES change, my gosh is change really difficult and stressful for him...

But i thought id pop and say hi xx

 

[Midnight_Fairy]

Hi and welcome x my 8yr old DS has autism xx

 

[mummy2o]

Welcome to this forum.

Firstly I remember when I did some work experience at a special needs school we had to video a child who had fits as the doctor didn't believe the parents. You should do the same and show the doctor, then see what he says.

As for autism my 5 year old son has severe autism and I have aspergers myself. However for my son who has autism he manages change really well, unless tired. If you want some tips from us or anyone else just ask as we've all been there and we have different methods to help our own children, which might help you have an easier life.

 

[MissPiggy]

Thank you both.
Kays abscences can be so short and so infrequent its very difficult to get them on film =/
WE've just had a letter through that we are going to meet with another pediaitrician so hoping this is a new step in the right direction xxx

 

[sun]

My son does the same - he tunes out completely for 30-40 seconds several times a day. When he's like this you can't get his attention at all even if you're right in front of his face. He was diagnosed with Global Development Delay + Hypotonia and Hypermobility at 18 months and eventually Speech Delay, but he has started talking in the last 6 months. He'll be 3 on the 14th. xx

 

[BlueHadeda]

My son was diagnosed with Juvenile Myoclonic Epilepsy when he was 5 years old (he's now 11). One of his seizure types were absent seizures. They were so brief that if you didn't know he has epilepsy, you wouldn't have noticed them. Or realised what they were. Fortunately we had a peaditrician that knew something was up when I took him to her. I witnessed another type of seizure where they don't loose consciousness at all, so I was very confused as to what had happened. A friend convinced me to take him to the pead, who immediately ordered a number of tests (one of them an EEG) just from my brief description that my son "fell down". I'm forever grateful to her, because it turned out to be epilepsy.

Go with your gut. Let us know what the new pead says?

 

[sun]

Just wanted to update that we had our appointment with the dev.ped. and she sent my son for an EEG because of exactly what you are describing. I would ask for one if you are still concerned. I don't think my son actually has epilepsy, but our doc said an EEG is usually recommended to rule it out. Absent seizures aren't well known (lots of people have a specific idea of what a seizure looks like, and absent seizures look totally different) - so often they go unnoticed - even by people who are in regular contact with them. xx

 

[MissPiggy]

hey sun, kay has had an eeg, ecg and mri all clear, but really unless he has a moment went on the eeg i cant see it showing up anything?


we've got a new appt with a new pead 4th december...

Kay has not started to shake his head for no reason....any ideas? xxx

 

[Eoz]

How did the appt go?

My son (2) is off to see a Nuro dr on 21st dec for blank episodes.I firmly believe he is Autistic and tunes out but the Health Visitor noticed it and spoke to the gp on my behalf and called me in and said they feel it is some form of seizures.Now I keep a diary and film it if possible or just take pictures.I am seeing a pattern now and i am worried but im hoping the appt will help me manage it better.

 

[MissPiggy]

hiya, new pead i lovely, and really taken our concerns seriously and agreed with most things.
He shows quite a few autistic traits, and is being sent for an sleep deprived eeg on the 4th December, im waiting for an over view letter from her because i was so in shock to be taken seriously i didnt take much in lol xxx

 

[sun]

The 4th? Does that mean you already had the sleep-deprived EEG? Not sure as the wording in your post said the 4th but it sounds like you haven't had it yet? If you have, how did it go? I postponed ours as LO has a cold but not sure how it will go. xx

 

[MissPiggy]

Sorry didn't word myself well did i??our new pead appointment was 4th December and EEG arranged for 4th jan xxx

 

[sun]

Hope you will let us know how it goes - ours is booked for the 2nd week of Jan. xx

 

[MissPiggy]

I will do. Spoke to the woman from the EEG department and she went through what happens, we've had an EEG before but not a sleep deprived one, so she went through what happens. Means I can try and explain it to Kay as well :-/ not sure he'll be happy with such a drastic change to his sleep and routine xxx

 

[RachA]

Hiya

I'm in this section as my little girl has a development delay and they are not sure yet exactly how much this is going to affect her - it's possible that she will always be very behind and that she may not talk, but it's also possible that she may catch up.


I just wanted to say that my little girl has also been investigated for seizures but hers weren't absent ones. She has also had an ecg, reg and mri which haven't shown anything thing up. I am assuming that you have been told that there is a high chance of your lo growing out of them? Esther hasn't had one since Feb of this year so it's looking likely that she has grown out of them - however we aren't out of the woods until 1 year has gone.

 

[RachA]

Has you lo had a 24 hour eeg? Hopefully the sleep deprived one will go ok. Esther has her 24 hour one back in Mar of this year and i was dreading it but she dealt with it really well. She was 2 years 5 months at the time and due to her communication problems we weren't able to talk to her about it.