To ask you about seizures in babies?

[inkworks273]

Sorry to post here but I’m desperate.

My 9 month old son had a seizure last Thursday morning and another one on Friday afternoon.

His eyes glazed over, his body then stiffened and his lips turned blue. It didn’t sound like he was breathing but you could hear a little grunting. This lasted for a minute or two before his body relaxed and he started breathing normally again. His eyes then started rolling back in his head and he just wanted to sleep. He slept the whole way in the ambulance to the hospital.

Doctors are taking a wait and see approach at the moment and want me to film it if it happens again.

Just wondering if anyone has experience with this? Obviously I’m worried he has epilepsy and I’m on edge, constantly worried he’s going to have another one.

The developmental delays are relevant because children who have delays can be more susceptible to being epileptic (not the other way round). The nhs will ask you often if any issues during pregnancy, was your LO premature etc. For this reason.
Epilepsy can also be genetic.

My Ds started having seizures at 15 months old. Diagnosed with epilepsy by 18 months old. He would have clusters of seizures.
All tests have found nothing.
He was started on Tegretol a while later Epilim was added. That created balance issues so taken off Tegretol.
Lamotrigine was added and that started to control the seizures.
He is 15 now and seizure free. He was weaned off the Epilim in 2018. Still no seizures so hopefully at his appointment in the summer we will be given the go ahead to wean off the Lamotrigine.

It has been hard and scary at times. We have just had to adapt to be aware and risk assess. Epilepsy hasn't stopped him doing things. He loves swimming we have always made sure one of us was close by just incase.
He has a care plan written by the epilepsy nurse which I pass on to relevant people.

In the early years we were told he had development delays.
At 3 years old we had concerns about autism. He was assigned a portage consultant, who was fantastic and really helped ds and us. With her help he started school with a sen statement.

He was diagnosed with ASD by 7 and in a sen school by 9. The school have been excellent and the future I feared for him has changed into a very positive one.

I won't lie it has been a very hard and at times heartbreaking experience.
I have learnt that I can question medical and educational decisions and my input is important. That sometimes you do have to push hard for your child.

My son was having seizures from the age of 4weeks. We took him to A&E and saw the dr, paediatrician etc multiple times but for some reason they all said it wasn’t epilepsy. By the age of 4 he was having a seizure every other night. They were all short seizures of maybe ten seconds.
Finally he had a daytime one on Christmas Eve in the middle of a snow covered pavement.
Despite every test they could do coming back clear, he was finally diagnosed with epilepsy. He was so Epilim but it made him feel sick and he wet the bed every night he was on it. We insisted on a change of meds so he moved onto Keppra which again stopped all seizures but made him very grumpy and depressed. Taking an adult sized vitamin B helped somewhat with this.
Finally, he’d been seizure free for long enough to come off his meds and now he is 14, seizure free and meds free.
Some pointers I wish people had told me: use a seizure pillow when your child is older. Never leave them alone near water. Seizure patterns can change. Question your meds - it is possible to change if the side effects are intolerable. Epilepsy is co- morbid with conditions on the autistic spectrum so be aware of that. Your child has a good chance of outgrowing epilepsy. Good luck xx

My dd had seizures as a baby and young child. She's now nine years seizure free and no medication. Big hugs to you it's scary

@OnlyFoolsnMothers I see. I thought epilepsy could cause delays.

@SvenandSven I'm glad your son is doing well. How long has he been seizure free? Good luck with the weaning process.

@Mistlewoeandwhine Wow, it sounds like you had a horrible time trying to get I diagnosis. So glad he's doing well now.

@cheninblanc It really is very scary. I feel like I can't take my eyes off him. Dh took the week off work which has helped but he's back on Monday and I'm dreading being alone in case anything happens. 9 years seizure free is amazing!

3 seizures are not considered epilepsy at all however after 3 they will start medication (which is globally the same, epilepsy or not) to prevent the brain from getting used to having seizures (whatever the cause).
I had seizures as an infant but only 2 and never reoccurred. No epilepsy.
My mother had loads in infancy. Then grew out of it. No medication at the time. No epilepsy.
My son had seizures around 9-11months. He had 5 in total (twice it was 2 on the same day) and went on medication for 2 yrs and because he has not no seizure we are now weaning him off it. No epilepsy. No explanation.
There are various forms of epilepsy and also seizures/convulsions which are not epilepsy related (usually febrile convulsions ie with fever - for us it was without fever, which made it all the more worrying until all the tests were done).

Inkwork273 even now I check my dd. It will never ever go away but it will become your normal.
Little tip I used to record each seizure and length in her red book xxx

For my daughter they were Reflex Anoxic Seizures, as a PP said, caused by a shock. My daughter had a few each triggered by something as innocuous as having a toy snatched out of her hands by her brother. She grew out of it but is still highly emotional at 13!

My daughter was diagnosed with West Syndrome (a very rare form of epilepsy in children) when she was 9 months old. She had had some seizures in the period leading up to diagnosis and we had been multiple times to the GP but as it’s so rare they hadn’t picked up on it. It was only when she had a seizure at the GP’s that things started to move, and we were then seen by a paediatric neurologist within 48 hours.
She had genetic screening and an MRI and there were no other underlying causes. Her type of epilepsy occurs in about 1 in every 2500 births and we were told we were just unlucky.
We were offered a referral to Great Ormond Street but had the most fantastic care at the John Radcliffe in Oxford. She had treatment with prednisone, initially in hospital and then at home. It worked although she was immunosuppressed for 12 months. At 3 she was discharged from consultant care. She is now 9, absolutely normal and doing very well at school. She is aware that she was very poorly when she was little as we recently told her but luckily has no memory of it herself. I will never forget.
Please don’t be fobbed off - early diagnosis and treatment of epilepsy in young children is key.
Please message me if I can help with anything. I understand how awful this journey is - but there will be light at the end of the tunnel

My colleagues son had a similar experience and went for scans etc. They determined it was actually a problem with his eyes and nothing sinister in his brain. I’m not sure why the eye problem caused the seizures.

Both of mine have had febrile convulsion. DD the eldest had quite a few from around 6m-8yr, generally when she got a temp. Hers maay last for 20 min and she would have repeated ones. She ended up on Sodiam Valperate to about 9/10.

MyDS just had 1-2 didn,t last so long, again with a temp. They are scarry. But thankfully ds only had one or two and dd grew out of them.

June2007 - how long ago was your DD on sodium valporate? That's what my son has been on but it's contra indicated for girls/women as it can affect their fertility I thought. My girls weren't allowed to even touch my son's medication.

@nah1974 my daughter has West Syndrome too. Are you in the UKIST group?

I have a positive story. My son had his first "absence seizure" at 6 months of age. He would suddenly lose consciousness, stop breathing, lips would turn blue. It would last 1-2 mins, then he'd be really tired afterwards.

He had blood tests, an EEG and various other tests, but no cause was found. We were advised it was likely to be "Benign Childhood Epilepsy" and that he would probably grow out of it. He had one or two episodes every few months till he was about 3.5 years, and has not had one since. He is now 8.5 so it does appear that he has grown out of them.

Hope your son has a similar outcome.

@oblada Thanks for the information. I'm glad your son is doing well. Did he only have the seizures between 9-11 months?

@nah1974 I'm glad your daughter is doing well. I read that west syndrome is associated with learning difficulties so it's great to hear that she's doing well in school!

@puds11 Thanks for the info. If it happens again I will be insisting on every test imaginable.

@LangittleClegabbage Your sons seizures sound very similar to mines. Was he on medication for it? Did it affect his development at all?

Inkworks - he had his first seizure in December time (2017), then again twice early January (2018) and then again twice in January later on. I think. He was put on sodium valporate at that time and hasn't had any seizures since. We're now weaning him off the medication. It was never increased in dosage so it should be straightforward (fingers crossed).

My understanding is that they start the medication after 3 separate seizures (2 on the same day can be considered 1), even if no cause is found, to avoid the brain getting used to have seizures as otherwise the seizures can become longer/harder to control.

@oblada Did your son meet his milestones or did it affect his development?

I'm obviously adult now but I had more than 2 seizures (at least 4 I can remember) as a child, no high temperature and I've grown out of it. Not had one since I was around 6

@ClientQueen Were you put on medication at the time?

@inkworks273 no. It's a bit hazy as a long time ago but I had several EEGs and I remember a scan in a tube so MRI I think as it was noisy! And also a strobe light test thing. I spent a few weeks in hospital

Inkworks - yes he is meeting his milestones no problem at all. He's nearly 3yrs old now and no concern at all.

My sister who is GP said that there were better medications then Sodium valperate and I think there are long term implications. She was on it from about 8 years.

Inkworks273, no meds. The seizures weren't frequent enough to warrant this, considering possible side effects.

And no, no developmental delay whatsoever.

June2007 - I hope your DD is ok. I do know that they no longer prescribe it to girls. For boys I'm only aware of the risk of over eating. Not sure if there are other risks but we're stopping now anyway.