Struggling to process this

[changedmyname24]

My FB memories are reminding me that 3 years ago, my son got made Form Captain at school & went on to win a year group award. We had debated whether to send him to mainstream school, but took the chance. Then epilepsy arrived, 6 months later. Now we are looking at placing him in a SEN school as he is just not coping. His sparkle has gone, his academic ability has gone back to the point where he is now classed as having MLD, from being average/above average & he is not as happy-go-lucky as he was. I know he needs Special school now, but it hurts to see the regression.

I can't know for sure, but I feel that epilepsy (& meds) have a large part to play in this 😥

That sounds really difficult OP.

I am confused why he requires a special school for epilepsy?

How old is he?

Because, for an unlucky few, epilepsy can cause brain damage.

It says they were considering an alternative school before the epilepsy, so presumably he has something else going on as well. And the two combined are making things difficult.

Sorry OP, it sounds hard. I know it's so so difficult making the decision about mainstream vs SEN school and wondering how your child will cope let alone thrive.

Do you have any support OP, is there a nurse specialist involved in your child's care? The way you are feeling is normal, you have had the rug pulled from underneath you and it is a very different parenting journey than the one you set out on.

He is 14. He has ADHD & autism (as well as hypermobility). He has always had 1:1 support & an EHCP, but with that kept up with others & was above average in some areas. When discussing senior schools we were told that he was too academic for the special schools in our area, although practically & socially he might benefit from them.

So we sent him to MS school with the same level of support & he thrived. Reward points, letters home, Form Captain, Year group award. Set 2 for maths & set 1 for languages (the school is a Modern Language hub!). In Year 8, he had his first ever proper birthday party, where he invited friends rather than just classmates. And he was included in a group chat & holiday meet ups. He had friends!

First seizure was end of Year 7, medicated & controlled for 6 months. Then got worse & technically considered to be medication resistant. Lots of seizure types. 2 different drugs but still has seizures.

He is Year 10 now & was recently assessed to be functioning at age 8. He can't remember basic things or follow instructions. Has mood swings. He is a totally different boy. His MS school teachers are as devastated by the decline as we are.

We have a wonderful epilepsy nurse & consultant but there is little they can do.

I have to tell myself that we are lucky he is alive, we have been warned about SUDEP meaning he could not wake up one morning. And I am so proud that he achieved these things, that people got to see what he was capable of. But wow it hurts so much.

I have had the SUDEP warning too, it's horrible isn't it. My little one's on overnight monitoring and the other night it alarmed. The alarm isn't unusual but it's normally just picking up a low heart rate but on this night I could see it was both his O2 and HR that were reading 0. I ran in and he was so still, I am not convinced he actually took a breath until I lifted him when he then took a gulp of air.

Is your boy a candidate for the keto diet or a VNS?

I am so sorry to read this, can't add anything useful but have a big hug, you sound like a fantastic mum

That is awful 😔 You must have been so scared when you went to him.

We are fortunate that DS doesn't have seizures in the night, but it is horrible to think that he might die 😥 I couldn't stop crying when I first heard it, now I try not to think of it & remind myself the chance is very small.

We haven't been told anything about VNS or keto. Tbf, lately he has had fewer seizures, went a whole month without & I got all excited 😏

Thank you. I don't feel like a fantastic mum. Pretty rubbish that I have in some way caused or failed to prevent this decline (which is irrational I know) & very aware that his 2 brothers have to witness all this & help with him & it is scarring them too 😔

It's so hard on everyone isn't it, do his brothers have any input as young carers? There are several organisations out there that can offer groups and support for children and young people in their position.

We have made some enquiries about Young Carers & waiting for a response. I just hope it wouldn't set them apart even more, especially the nearly 17-year old - if it's even relevant for his age.