Regression in autistic teenage boy

[changedmyname24]

Has anybody experienced regression in a teenage boy? DS has autism, ADHD & epilepsy. He is 14.

He has always had difficulties/differences but got along nicely in his own way. MS school with lots of support, a few friends, very happy-go-lucky & a real entertainer.

Recently, over the past few months but especially weeks, we have noticed a general downturn- to the extent we & school are now considering SS & he is gradually losing all friends & hobbies. His learning & retention is slower, his movements & processing also. He spends a lot of time staring into space. He is moody & aggressive. DH thinks he now walks with bent legs. School remark that he has lost his spark 😔

I don't know if this is normal, if it's down to epilepsy, meds, autism or hormones. Or all of the above. I don't know if he will be ok or if he will continue getting worse. It is upsetting to see, feel like we are losing our boy.

Regression isn’t unheard of. It could be any of the things you listed. Although I would want to rule out other causes too.

Have you spoken to DS’s epilepsy consultant? I would start there.

Has DS seen a physio about his walking?

An updated EP assessment would help too.

He had an EEG a while ago so I am chasing up the results of that.

I have emailed his epilepsy nurse & she will pass that on to his consultant if she feels it is necessary.

His school have called an emergency review of his EHCP & will get an EP in for that.

I am also taking him for an eye test tomorrow, which is due anyway. Just in case.

Trying to cover as many bases as I can, but feeling very much like I'm shooting in the dark 😔

I would contact the consultant’s secretary. The consultant needs to be aware of this and involved. Rather than just if the specialist nurse thinks they should know.

She usually passes my messages on to the consultant, but I am waiting to hear from the consultant's secretary about EEG results (I left them a voicemail today), so I will mention it to her too.

I swear my child has a whole medical army & it seems to keep growing! The other 2 have barely an appointment between them 😏

I happened to Google yesterday whether epilepsy meds can cause regression. Both Levetiracetam & Lamotrigine are named as possibly doing so, and they are both meds he takes. Although has been taking one for 5 months, the other for a year or so. But glad I have emailed the epilepsy nurse as seems like it could be significant.

Mine is different profile and no epilepsy but also fell off a cliff at 14. It was not really labelled, but treated as depression/autistic burnout. Still on a very part time timetable at 16 but we are slowly getting him back. Main treatment has been antidepressants, which we had to go private for. CAMHS didn't want to know until he'd tried CBT, which he's never been near able to access.

It would never have occurred to me to call it regression but the similarities struck me from your description.

It's so hard isn't it @Moshki? Especially when you remember how they used to be, until fairly recently for us 😔 I'm glad your DS is starting to improve.

I don't think we would cope with part time school! But obviously we will do whatever we have to & is best for DS.

After literally months of emailing & about 2-3 years since his last appointment (!) I magically got a text yesterday inviting us for a review with the community paediatrician. I had emailed them the previous evening stating there was an emergency EHCP review coming up, so that may have done the trick.

I am also awaiting an appointment time with the epilepsy consultant as it they want to discuss his EEG result with us. They don't think this is the sole cause of recent regressions, but it will be interesting to hear what they have to say.

He had an eye test the other day (I had been receiving overdue emails 🙈), but that showed nothing. Which I guess is good. I am not taking this lying down & am covering all bases in the hope something will stick! We have also been having more 'brain food' (salmon, mackerel, blueberries, nuts & seeds) as both his brothers have exams, so maybe that will help!

Update: we had our epilepsy consultant appointment yesterday & he has upped one of the meds (Lamictal). Asked about changes in behaviour & seemed to think the other drug (Levetiracetam) would not help that & increasing Lamictal should ease symptoms. Although will be a week or so before increase can take effect, as the admin is so slow 🙄

Also looking forward to the Community Paediatrician appointment to see what they have to say.