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Here you'll find advice from parents and teachers on special needs education.

Original poster

Epilepsy & MS school

5 replies

changedmyname24 · 06/12/2024 14:45

DS2 is 13 & has autism & inattentive ADHD. He also has epilepsy, which came on last June, when he was just 12.

He attends the same MS secondary school as his brother in Year 11. DS2 has an EHCP & lots of support, he has somebody with him at all times including breaks & has exam adjustments in place.

He had a fantastic start to secondary school life & won a whole year award in Year 7. He is popular with teachers & treated well by children, he has a little group of friends he socialises with sometimes (doesn't use his phone so not as social as he could be).

He is Year 9 now & DH is questioning whether this is the right place for him. He can understand the work but homework takes a lot of time & support. We got his report yesterday & he is achieving between 1-4 in all subjects. He is in top set for languages & middle set for maths.

His epilepsy has recently taken a turn for the worse & we have been told he is classed as complex due to multiple seizure types & drug resistant therefore uncontrolled. He is now on Lamotrigine in addition to Levetiracetam & is currently vomiting once or twice a day (fine afterwards) 😔

School are very good & try really hard, but sometimes I feel are overcautious meaning DS misses out. This morning he was taken to medical room for 'an absence' then they didn't put him back in Music or Computing lessons because they felt it was too loud & he might react to lights. He thrives on noise & is not photo sensitive. They also used to ring me for every absence, which could be multiple times per day, but after discussion this now doesn't happen so much.

DH concern is that he will miss too much & struggle with work. I feel he loves the school & if allowed to do just 6/7 GCSES he would be fine. DH has talked about wanting to move him to special school & even move house across the country to do this. I feel this is not necessary & detrimental. I feel he is too academic for special school. He loves languages & drama & I don't know if he could pursue these at special school.

I do know that I hate epilepsy & it is making school so difficult! Does anyone have any advice or experience to share please?

OP posts:
BrightYellowTrain · 06/12/2024 15:35

Can you look at reducing the amount of homework &/or DS doing it at school (either via a homework club at lunch or after school or via withdrawing DS from some lessons to complete homework and other interventions then)?

Does DS have an Individual Healthcare Plan? He should and it needs updating, so the school knows how to support DS better/recognise triggers (and what is not a trigger in DS)/what to do in what situation. Does DS have a specialist nurse? This will hopefully help them feel more confident managing DS’s epilepsy.

It also sounds like you need a review of the EHCP.

Be aware if you move LA, the new LA will review the EHCP and potentially amend, reassess or even propose to cease to maintain. You would have the right of appeal, but it is a risk you need to be aware of.

DS isn’t too academic for special school. It depends on the SS. What SS offer varies. Some SS offer drama and languages.

You need to know what the report grades mean, are they what they predict DS will achieve at the end of Y11 if the current progress continues at the same rate or is it a grade based on what DS would achieve if he sat GCSEs today? Getting grades 1-4 on their own wouldn’t normally mean SS is needed. Although obviously other needs DC may have might do.

normanprice62 · 07/12/2024 10:10

Good advice above. I'm just going to concentrate on the over reaction from personal experience. We had similar with ds. They would literally ring for every abscense (often sending him home also) and stop him from taking part in activities. I'm assuming you deal with the epilepsy nurses? Our epilepsy nurse rang the school and gave training. I think a lot of it was caution on their part as they didn't fully understand his epilepsy, that's understandable. She also wrote a more complex care plan which gave more detailed instructions for particular scenarios. This dramatically reduced the phone calls and ds was able to take part in activities again following the guidelines given by the epilepsy nurse. We had the same with lights, he was excluded from the sensory room even though he didn't have any issues with photosensitivity. It was all coming from a good place, but not ideal for poor ds. It may be worth speaking to the epilepsy team, to see if they can have a gentle word.

Original poster
changedmyname24 · 07/12/2024 23:22

BrightYellowTrain · 06/12/2024 15:35

Can you look at reducing the amount of homework &/or DS doing it at school (either via a homework club at lunch or after school or via withdrawing DS from some lessons to complete homework and other interventions then)?

Does DS have an Individual Healthcare Plan? He should and it needs updating, so the school knows how to support DS better/recognise triggers (and what is not a trigger in DS)/what to do in what situation. Does DS have a specialist nurse? This will hopefully help them feel more confident managing DS’s epilepsy.

It also sounds like you need a review of the EHCP.

Be aware if you move LA, the new LA will review the EHCP and potentially amend, reassess or even propose to cease to maintain. You would have the right of appeal, but it is a risk you need to be aware of.

DS isn’t too academic for special school. It depends on the SS. What SS offer varies. Some SS offer drama and languages.

You need to know what the report grades mean, are they what they predict DS will achieve at the end of Y11 if the current progress continues at the same rate or is it a grade based on what DS would achieve if he sat GCSEs today? Getting grades 1-4 on their own wouldn’t normally mean SS is needed. Although obviously other needs DC may have might do.

Thank you for such a detailed & interesting answer. It's so nice to feel somebody understands, I don't know anybody irl who does although all very sympathetic.

To answer a few questions:

  • He used to do homework at school, but now they want him in at the last minute when his TAs start so I can hand him over directly. Ditto afterwards, pick up when bell goes. So no time before school. He takes the whole hour to eat lunch so no time there either. When it comes to GCSEs next year they have talked about fewer subjects & extra sessions in what he is doing.
  • He has an Individual Health care plan & full EHCP. But his health needs are changing weekly atm, new & different seizures all the time or other ones subsiding. Or this week vomiting (none since yesterday morning though 🤞). He does have a specialist nurse who is very good. She wrote an email for me to send to school & they are ringing less now but still keeping out of lessons.
  • I didn't know EHCP would change or possibly be revoked for new LA. Worth bearing in mind thank you.
  • Good to hear about SS. We have 3 locally & none offer GCSES beyond Maths & English & no mention of languages. He is obsessed with French & wanders around the house speaking it, relishes every lesson so it's really important to him.

1-4 is his current attainment. Predicted 4-5 in most subjects if progressing like this. But then again his brother was predicted 6s in some subjects & now achieving 8/9 in Year 11 mocks so I know it can change a lot.

OP posts:
Original poster
changedmyname24 · 07/12/2024 23:26

normanprice62 · 07/12/2024 10:10

Good advice above. I'm just going to concentrate on the over reaction from personal experience. We had similar with ds. They would literally ring for every abscense (often sending him home also) and stop him from taking part in activities. I'm assuming you deal with the epilepsy nurses? Our epilepsy nurse rang the school and gave training. I think a lot of it was caution on their part as they didn't fully understand his epilepsy, that's understandable. She also wrote a more complex care plan which gave more detailed instructions for particular scenarios. This dramatically reduced the phone calls and ds was able to take part in activities again following the guidelines given by the epilepsy nurse. We had the same with lights, he was excluded from the sensory room even though he didn't have any issues with photosensitivity. It was all coming from a good place, but not ideal for poor ds. It may be worth speaking to the epilepsy team, to see if they can have a gentle word.

Edited

Thank you. Your experience sounds almost identical to mine! I also think our school is doing what they think best & looking after him. They genuinely seem to care, everyone from the teachers to TAs to medical officer to ground staff. But he is missing out on things because they are scared it will set him off. I will see if nurse can write again.

OP posts:
BrightYellowTrain · 08/12/2024 10:39

The school shouldn’t be excluding DS from before or after school homework club/access to the library because of his epilepsy.

The other possibility for doing homework at school is withdrawal from some lessons now. You don’t have to wait until GCSEs for that. Often DC are withdrawn from languages. That wouldn’t be appropriate for DS, but there’s no reason he couldn’t be withdrawn from other lessons.

Ask the specialist nurse to meet with the school rather than just write emails. It may be useful to get the school nurse (0-19 nurse or whatever your area now calls them) on side too.

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