Xmas seizure

[Cerida]

My 15 yr old hadn't had a seizure for 10 months as he is on medication which we thought was working. Unfortunately he had opening his presents xmas morning. We are totally gutted for him and its feels like we have gone back right to the start of it all 😢

[Adlon57]

What sort of epilepsy has he? What sort of medication is he on? When did he have his first seizure? Does he have a specialist/neurologist who is familiar with his symptoms? Unfortunately epilepsy is like that, many things can set off a seizure! Hope he finds a medication that is compatible with him, many medications although not curing him, can let him have a near normal life? Good luck👍

[Cerida in reply to Adlon57]

Generalised epilepsy. He had his first seizure on his 14th birthday which was nov 21.Had another 4 after that. His last one was in feb after starting Lamotrigine. He is on 75mg morning and night.

[Jamaicangirl in reply to Cerida]

he had a seizure after starting lamotrigine? Was the dose changed?

Were any triggers identified?

Do you have rescue meds at home?

Has he been sleeping well?vaccinated?

I hope that he loved his gifts and was able to enjoy the rest of the holiday. The doctor will give you an updated plan.

[Anonite]

Hi Cerida,

So sorry that this has happened must be so upsetting for you. Hopefully the fact that Lamictal has controlled your sons seizures for the past 10 months that an increase in the dose might be what is needed. I was speaking to my doctor last week my son has only been 3 months seizure free since Lamictal was added in September. The doctor said that this shows that it can be controlled he did say that the dose may need to be increased at certain times over the years and lifestyle factors would usually be considered with these increases I think he was basically saying due to growth spurts, life events( college, socialising etc) that these are all considered when increasing they are trying to get the right level of medication that best suits the person. I know it is very hard and because of the nature of epilepsy it is just so unpredictable. People seem to think epilepsy is just taking a pill and everything is grand if only it was that easy. I have been told the first year or two are the worst and that it does get better. The majority of people are controlled within this timeframe. 🤞that it will all work out.

It is traumatic to see your child go through this but hopefully as Adlon57 has said that once they get the right medication he will be ok xx

[Cerida in reply to Anonite]

Thanks Ruth. Its just so cruel 😢

[Upsydaisy2005 in reply to Cerida]

I am so sorry! It’s so hard.. I have been through this and I cry every day. My daughter is 14 and on Lamotrigine 50 mg. Slowly planning to uptitrate. Due to side effects, slow up titrations. Awful experience… I have no words to explain. It’s indeed very hard for mom

[GillyA]

Hi, I can only imagine how scary this must be as a parent. I had adult onset epilepsy, in my early 30s and 25 years later my 85 year old Mum still worries about me.

I hope I can add my reassurance to others, by saying for the majority of us neurologists do manage to get the seizures down to manageable levels (or even none at all). You must have all sorts of worries about your son’s future. Whilst each of us is different, I can offer my experience of having a successful career, which includes extensive international travel, extended periods working overseas and good support from my employer.

I find the seizures themselves and the recovery period very difficult, but I focus my attention on the 98% of the time when I am ‘well’ and ‘normal’. I’m sure you and your son will find a way through.

[Jamaicangirl in reply to GillyA]

Beautiful answer

[Upsydaisy2005 in reply to GillyA]

thank you ! Stay blessed

[lightfamily]

Morning Cerida, my daughter is 14 she has IGE & had a seizure yesterday so I completely understand how you feel. We have seen a neurologist privately as the waiting list to see one on the NHS is 6-9 months, the neurologist has given us a plan to increase our daughters medication to the optimum level of Lamotrigine to 175mg morning and evening. Her paediatrician has the policy of watch and wait which we felt was not fair for a 14 year old or on anyone for the matter. The plan involves increasing her medication by 25mg every 2 weeks, she will be at the optimum level by February. The information we received from the neurologist was really helpful and much more than we ever got from her paediatrician . Also and I have to admit this advise has been given to me by people on this forum who have epilepsy themselves, listen to what your child's needs and wants & try to not let him see your fears and worries. That is not easy, I know! My daughter has been having frequent seizures since August and at the start she did not want to leave our side, even for school. She has had counselling and hypnotherapy and now - now she is going out with her friends today! Staying in the village and we will be home as well but it's so nice to see her living her life and not letting this stop her from doing what she wants. I am putting all my hope into reaching the optimum level of medication and this stopping her seizures. I hope you find this helpful and wish you and your family the best of luck, take care xxx

[Cerida in reply to lightfamily]

Thankyou for this....need some positive feedback. The consultant increased his dose to 100mg at night and still on 75mgs in the morning. Just have to see how it goes. Its so hard to hide my feelings from him. Hes 15 and understands. I know he is scared but he treies to hide it x

[Jamaicangirl in reply to lightfamily]

counseling is great, yes!

[Upsydaisy2005 in reply to lightfamily]

hi Thank you for your post. We have been very slow in uptitraion.

My daughter is on 50 mg and planning to increase by 25 mg every 2 weeks. She struggles to fall asleep ( initiation) is a problem. Once asleep she sleeps well and struggles to wake up. She hates going to school. She had 3 lots of seizures in August/ September. All nocturnal tonicclonic seizures. One was inside the flight.. and I have to give rescue medication. I am so scared about SUDEP.

Did Counceling help your daughter? Mg daughter has mood swings, easily cries for small matters, which isn’t her normal self. Anger issues are another big problem- not sure whether hormones and epilepsy all playing together

[lightfamily in reply to Upsydaisy2005]

Hello, when my daughters medication was first increased she was very unsettled, very tired, mood swings and generally not herself, I thought it was her epilepsy at the time. But looking back and seeing how she is now I think it was the side effects of the medication increase. It took her about 3 weeks to get used to the first increase and everything settled down for her, the 2nd increase took about a week and now she does not have any side effects when we increase. Yes counselling has helped her massively and I would defiantly recommend it, a child and young adult counsellor needs your permission and will give you progress updates but the sessions are confidential between counsellor and child, my daughter definitely needed to be heard from someone who didn't have an opinion or personal connection. It's tough, I understand but your daughter sounds very much like mine, I'm sure she will get used to the medication and everything will settle down for her, to give you a time scale it took my daughter 4 months. I hope this helps, take care xxx

[ChangedMe]

I hope the seizure didn’t spoil your Christmas. I have had epilepsy for 18 months. I take Lamotrigine & Levetiracetam and had not had a seizure for 6 months although I have had absences in that time, I also had a seizure Christmas morning.

I am still getting to grips with medication.

Many things can impact on my epilepsy, if I’m ill, over tired etc Speak to your neurologist/ specialist.

[Cerida in reply to ChangedMe]

Can i ask how old you are? My son was diagnosed feb 2021 and had 4 seizures. Since taking lamotrigine he hadnt had one for 10 months untill xmas morning x

[lgd333]

Am so sorry. A seizure can happen anytime and possibly the excitement of Christmas triggered it. I've had epilepsy for 49 years now and still have focal seizures regularly. I hope he gets the rest he needs. Thinking of you all!