Could this have been a fit? seizure? or something else?

[hazeyjane]

Last night ds (1 with developmental delay and low muscle tone) started screaming, I tried to comfort him and put his dummy in, but he was rigid and his jaw was clenched, he was drenched in sweat (but no fever). I laid him down and loosened his clothes and could see his throat looked sort of swollen, his eyes were half open and bloodshot, the screaming was kind of strained and gargly as though he was being strangled. It was terrifying.

It lasted for about 10mins, and after he had calmed down he was fine. I spoke to the dr this morning and she said she couldn't be sure if it was a fit (she said there would be more of an after effect if it was a fit), or possibly related to the fact that he may be aspirating, she just said to monitor it and call the paeds if it happened again. Dh thought maybe a night terror, but the dr thought he is probably too young for these.

Does anyone have any ideas as to what it could be?

Hi hazeyjane my dd does this hers can go on for 1-1.30hr.It really is terrifying to watch these are slightly differant to the other screaming fit she has which comes post seizure these to can go on for anything up to 2 hours.The second ones have been captured and are a definate seizure the first we are not so sure about.We too have been told just to monitor although her anti epileptics have been increased.

At school today (SN school for sld/pmld) we had a talk on epilepsy from epilepsy nurse. She highlighted the importance of recording both writing and filming. Told record what child was doing, what symptoms are and what they did after.

Also showed lots of film of what we thought were seizures but were actually things such as night terrors, reaction to pain, hyperventilating and many others.

If you suspect a seizure and it lasts longer than 5 minutes call an ambulance - well thats the advice we're given.

HTH?

Gets really confusing with our dd as she also has apnea attacks,hyperventilates,breath holds.So we have definate seizures,definate stuff to do with her condition and then all this other stuff in between that evewn the dr's are confused about.
Hazeyjane i would definately say to record every episode with camera and paper as evidence.

Thankyou.

2 hours, Growlybear! How scary, what can you do when it is happening?

Whilst I was holding ds last night, dh and I were having one of those panicky, 'should we call amubulance/out of hours/ get in car?' conversations, and then he started to calm down.

If it happens again one of us will try and film it, I must admit that didn't even cross my mind last night!

Hi hazey we can now give a rescue medicine but this is a recent thing they have been happening since nov 2009.Up until now we have just had to watch-horrible to say the least.We film and document everything its the best way although we hate doing it as it feels intrusive but it is the only way for the dr's to see what is going on.We have had many of those well what should we do moments.I would say if it happens again i would call an ambulance,then they can see what is happening too.

Please could Growlybear contact me,need some advice,

Hi Hazyjane, if these type of episodes carry on especially for the length of time you are experiencing,you should get professional help,my dd has seizures,but on some occassions when not well she will have one after another after another i know now we have to seek medical help.

Can anyone give advice on transition from the age of 16yrs,just starting to fil in forms and meet new people involved with transition want to get it right for our dd,dont want her going to residential,she is part of a loving family who want her to go to a day care centre and stay with her family.

lovethecake What sort of things do you want to know about transition. Sorry I don't know anything about your DD but my DD is also 16 (nearly 17) and has PMLD and complex health needs, so we are going through transition process too, although DD will stay on at Special school until 19 (actually she will be almost 20!). We have already looked at local colleges and day centres and know a little about changes re NHS/PCT services although their adult teams will only make contact with us in next 12 months. But it is scary time of lots of changes - all our respite will change & there is currently no suitable overnight respite service in this area for young adults with PMLD + health needs which is the scariest bit as DD has being going to a childrens hospice since she was 3 - and they have been fantastic
Let me know if I can help - although things differ from area to area but I have recently been involved in a Transition project on behalf of our local authority so picked up quite a bit of info from that.