Anybody to talk to abit worried about dd 13yrs

[madmommy6]

We went to see a consultant at birminghams childrens last week.It was her first appointment for possible epilepsy.We got sent straight up to have a ECG after talking to the consultant,we don't know the results yet.Today we received a appointment for a EEG on the 5th sept.We knew she would have to have one but worried how quick its all came through.Only went to GP the begining of july and we are know what the NHS is like.
Part of me is glad thing are happening quickly and the other part is worried that she is bring seen sooo quickly.

My Sister developed epilepsy in her teens and has always received excellent care. They take it very seriously and I suspect this explains the speed of it all.

She is in her 30s now and Married with 2 boys and it in a professional job. It held her back a bit whilst they sussed out her drugs doses etc but since then she is able to lead a normal life. (except she does not drive yet!). One of the best things she did was tell everyone she knows that she has the condition. That way if she has a fit (which are rare) people know how to handle it and althoguh shocking to see at first at least they know what is causing it.

There is a national epilepsy society which is very supportive. They helped my Sis when the GP prescribed a different brand of her meds to save them money, this can be risky. They also help source insurance etc

HTH

callmeovercautious thank you for taking the time to answer.Deep down i know everything will be alright.I know afew people with epilepsy and are very close to a couple with a child who has epilepsy.But until it's one of your own you never fully understand the worry that goes with it.iykwim.I just needed to talk to somebody about it,but everybody's out.So where do i turn mumsnet of course.

callmeovercautious thank you for taking the time to answer.Deep down i know everything will be alright.I know afew people with epilepsy and are very close to a couple with a child who has epilepsy.But until it's one of your own you never fully understand the worry that goes with it.iykwim.I just needed to talk to somebody about it,but everybody's out.So where do i turn mumsnet of course.

callmeovercautious thank you for taking the time to answer.Deep down i know everything will be alright.I know afew people with epilepsy and are very close to a couple with a child who has epilepsy.But until it's one of your own you never fully understand the worry that goes with it.iykwim.I just needed to talk to somebody about it,but everybody's out.So where do i turn mumsnet of course.

callmeovercautious thank you for taking the time to answer.Deep down i know everything will be alright.I know afew people with epilepsy and are very close to a couple with a child who has epilepsy.But until it's one of your own you never fully understand the worry that goes with it.iykwim.I just needed to talk to somebody about it,but everybody's out.So where do i turn mumsnet of course.

Don't know what happened there.

Hi madmummy I think you have just been fortunate to get an appt so quickly so dont worry - I know our minds play all sorts of tricks! My ds2 has epilepsy and our appt came through after about 4 weeks - they have a scale of urgency 1 2 and 3 and he was on the 2, your dd probably is too.
What are her symptons?

Howdydoody if dd has chance to say anything,she usally says she feels funny,and is hot but not a temp and then just drops.She shakes but sometimes only down the one side and eyes roll.It lasts for afew mins then she comes round,very confused and feels sick and goes and lays down for about a hour then back to normal.She says the funny feeling she gets is like pins and needles in her arms.

Sounds similar to my LO. They have diagnosed Tonic Clonic as his seizures. Have you been advised to try and capture them on film? I did this and it helped diagnose his seizures. Feels horrible filming them so invasive, but the consultant was really appreciative of it. A had my phone constantly on charge so grabbed it and managed to get about a minute.
He has been on epilim/sodium valporate for about 16 months and they are fully under control, with no side effects apart from maybe a little tiredness at first.
How are you feeling with it all?

Howdydoody sorry just feeding the little ones.Yes we have been asked to film them if we can.Never thought of that till after she had the last one.
To be honest we have lived with these 'fits' for so long now,we are getting use to them happening.But from when the GP refered us to birmingham's childrens everything seems to be happening so fast.I feel in a whirl,if that makes sence.

Yes I know what you mean "in a whirl". TBH though this is when i really appreciated the NHS and thought how lucky we are to have it in this country. Sounds like you are being looked after too. Have you checked the Epilepsy website callme said about? I have found it helpful tho i havent ventured onto the forum yet

My nephew had his epilepsy confirmed at the same age 2 years ago. Not a surprise as his mum, uncle and grandad are epileptic too, but all are well controlled and lead full and active lives. He does wear his medicalert bracelet, follow the link to the range for younger people. It is difficult enough letting them go off and do their own thing, but even more so if you have a new medical problem to worry about. These bracelets give you and them reassurance.

www.medicalert.org.uk/online_application/products.aspx

Do be vigilant as she goes through puberty as often the medication is related to body weight and if she goes through a rapid growth spurt it may need adjusting. As for driving, usually the DVLA is OK if she just has episodes in her sleep, it's if she has them during waking hours that they get concerned.

Thank you to all of you,i don't know where i would be some times without mumsnet and the NHS.I think i'm lucky too for dd to be seen so quickly and just going to take it one step at a time.
Just relised the appointment is for the day she starts back at school.Never mind.
At the moment i'm not worried about her being able to drive or not.She drives me around the bend enough.lol.Hopefully by then she will have meds sorted.