Waiting for a diagnosis and I am so scared.

[WorriedMummy2017]

My daughter (age 4) has had 5 seizures within 8 days. Her most recent two were today. One whilst having an EEG. The other (3mins) whilst asleep. The dr who checked on her after her EEG said her case was urgent and we should hear from her consultant in a few days. We still haven’t received a referral to neuro. I managed her seizure at home and stayed calm but I am so scared. How quickly can I expect a diagnosis and some support? I am worried about it being the weekend and not being able to contact anyone to let them know she has had another seizure.

[Daesin]

I can’t imagine the hell you’re going through. To watch your baby go through such a terrible ordeal, my heart goes to you.

I am so sorry to say I don’t have the answers. I don’t know what they want you to do. But if you ever feel your child’s life is at risk you should call for an ambulance.

I can only suggest the obvious. Keep the child safe and document everything happening before and after an event. Try to keep life as normal as possible. Little one needs you to be calm and strong. Children look to us to determine how to react in the situation. Enjoy every moment you can.

Oh and the Dr might have an after hours answering service.

[EpilepsyAction1 Partner Epilepsy Action]

Hi WorriedMummy2017

I can understand you must feel worried and frustrated that you can’t get answers. The waiting times will vary depending on what part of the country you are in. To see how long your daughter may need to wait, you could phone the neuro department or talk to the hospitals Patient Advice and Liaison Service (PALS). They may be able to give you a time scale.

nhs.uk/nhs-services/hospita....

It is a very difficult time for parents when they are told their child may have further seizures. Many parents find living with the uncertainty is not easy, but with time many find their own way of coping.

For this reason, we have the following information to help parents and their children learn and feel as safe as possible:

You can download the information, or we can send information to you by post.

General epilepsy information for children. This includes stories and animations. epilepsy.org.uk/info/children

Information for parents epilepsy.org.uk/info/children

Online course for parents learn.epilepsy.org.uk/cours...

Safety epilepsy.org.uk/info/daily-...

I hope you hear from others on this platform as sharing information and experiences can be a good idea. If you don’t hear from others in a similar situation, you may wish to try our other services.

virtual group meetings for parents of children with epilepsy epilepsy.org.uk/virtual-groups

General online community forum.epilepsy.org.uk/

Facebook facebook.com/epilepsyaction

Twitter twitter.com/epilepsyaction

e-newsletter epilepsy.org.uk/newsletter

If we can be of any more help, please feel free to contact us again, either by email or the Epilepsy Action Helpline freephone 0808 800 5050. Our helpline is open Monday to Friday 8.30am until 5.00pm and Saturday 10.00am until 4.00pm.

Regards

Diane

Helpline Team

[Grammy80]

Dear WorriedMummy, how are thing going? I saw your post and wanted to tell you to take heart even though this phase is so hard. I'm an 81 year old who was having petit mal seizures which back in the 40s and 50s my parents didn't understand, neither did I. The thought I was just rolling my eyes around on purpose. Finally, at age 15, I started having grand mal seizures. I was glad to read that your daughter had one while they were doing the EEG and hope they can get good diagnostic information from that.

They have never found a cause for mine and called it idiopathic epilepsy. At age 15, a junior in high school, it took a lot of trial and error with meds...but then I had 100% control for years. I had a few intermittent seizures and control once again with good neurological care.

I have lived a full life, married, divorced, raised my two sons alone and kept a home. I've traveled to Europe (I'm in the states)....my life has been normal in every way. I always stay in touch now with a neurologist....and the meds today are so much better and the tests so much less invasive.

You have my heart completely but I hope I can also give you hope. I haven't had a seizure for over 40 years but recently had to have my meds changed recently because one of the other meds I'm on watered down the anticonvulsants. The most important gift you can give her is for her to have confidence and not to feel 'different'. I'm sure my parents worried, but I didn't know it, so I didn't. Bless you and I hope control comes soon. 💕💕