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Am so worried (seizures)

(8 Posts)
JetcatisBack Wed 03-Apr-13 17:55:15

Please can someone save me from Dr Google, and winding myself up even moresad

My DD (16) started having seizures a couple of month ago - prior to this she had only had one tonic clonic seizure 6 years ago. She is continuing to have them despite medications increasing - the fits are actually increasing both in frequency and length. She is also losing her balance regularly (her legs just give way) and is having muscle jerks down one side of her body.

She has had two EEGs now, the first showed abnormal activity was present all the time, not just when fitting. The second (sleep deprived) we wont know the results until next week. DD is also scheduled for an MRI next week, as apparantly there is concern that she has features of both focal and generalised epilepsy. The MRI is to check for a "physical cause" of the seizures. I know (because I asked the doctor blush ) that they are looking for a tumour. While they did so that that is worst case scenario, my mind is already there.

Can someone offer any words of experience? Or general hand holding would be good to, many thanks.

Pancakeflipper Wed 03-Apr-13 17:57:51

I can only do general hand holding. I often think the not knowing is the hard part, keep plodding along with the medical team and you and your daughter will get there...

And don't Google.

purplewithred Wed 03-Apr-13 17:59:01

Can only offer general hand holding and can't imagine how you must feel. My only experience is via a friend whose daughter has epilepsy; in her case puberty had an impact on the efficacy of her medication, and eventually her seizures did settle down.

Thinking of you.

fatzak Wed 03-Apr-13 18:01:40

Hand holding from here Jetcat. DS (9) has had epilepsy since he was 3 and I know how worrying it is. We have been through some incredibly tough times, but has been pretty stable for the last three years since being on the ketogenic diet.

Here's hoping that the MRI gives you some answers to move forward.

JetcatisBack Wed 03-Apr-13 18:15:36

Thank youthanks

Pancake - the not knowing is definitely the hardest part. Not knowing what is causing it, and when she is going to have another one. We have a monitor for during the night and day as I dare not let her out of earshot when she is in her bedroom , a wheelchair for when she is so tired she can barely stand let alone walk (this is after 10 hours sleep on a night then a two hour nap at lunch time), and as we dont have a shower fitted yet, we have resorted to getting her to have a shower at her grandads once a week.

Purple, hormones have been suggested as a potential cause, I guess its just a case of 'wait and see'.

Fatzak (great name smile), sorry you've been through some tough times as well - but great that the ketogenic diet is working (only know about it through the film!)

I think I am feeling completely overwhelmed by just how much her life, our life, has changed in a matter of weeks.

FoodieToo Wed 03-Apr-13 20:11:14

Jetcat you poor thing.
I appreciate how worrying this is for you.

It is most likely epilepsy. They have to do the tests just to tick the boxes.

I hope you get answers soon.

We have epilepsy in our family and I know it can take a very long time to get the meds and their balance right,so don't despair.

It can take months to get it right.

belfastbigmillie Sat 13-Apr-13 19:17:22

Hello, my DS now 7 has epilepsy. There is no epilepsy in our family so I've no idea why - he just does. He has only ever had 1 daytime seizure but loads at night. Epilepsy can often be triggered by puberty. The fact that she is getting an MRI is standard. They just need to rule out the worst, but that doesn't mean it is likely that she has a tumour. She probably just has epilepsy, as do 1 in every 100 adults. The reason that it is very rare to see anyone having a seizure is because most people's seizures end up being totally controlled by their meds. You have done the right thing getting a baby monitor for her room. You can also get seizure pillows. Make sure she doesn't have cuddly toys etc near her head at night and don't let her have a bath unless you stay in the bathroom with her. I know it doesn't feel like it now - but your daughter is going to be ok. I promise. DS has his seizures controlled by keppra. He is handsome and clever. Nothing has changed by him being on his meds and because they control his seizures, he leads a totally normal life. The stress of his diagnosis affected us dreadfully as a family so I really do know what you are going through. My heart goes out to you.
Stay strong. It will get better. Epilepsy Action have a forum where parents and carers can chat. Also, if you are on Facebook, Epilepsy Sucks is good too. Good luck xx

belfastbigmillie Sat 13-Apr-13 19:21:01

Sorry - I just realised that she is on meds already. What is she on? I think the average person with epilepsy has to try 15 drugs to find the right one. My son is on his second - keppra - which has worked well for him. I am guessing that your DD is still on the first drug they've prescribed but that they are increasing the dose? Are they getting fewer with the increase of the meds?

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