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(42 Posts)
Gr8dame Tue 05-Apr-22 18:52:30

My grandson aged 17 suffered from a rare kind of epilepsy which started when he was 10 and continued until he was 16 when he grew out of it. He never had full blown seizures The only way you could tell he was having an episode was by his hands flapping. If he was walking when he had an attack his body went on moving. He was prescribed Epilim which cut down on his attacks until he grew out of them.
He will be 18 later this year and is so unruly that he is causing complete chaos in the home and is not working in school. He is rude and disrespectful his teachers. He won’t take any criticism, is constantly lying and accuses his parents and siblings of stealing his belongings. He refuses to eat the meals his mother prepares and orders in takeaways (he has a weekend job which provides him with income).
I may be clutching at straws here so thought I’d ask if any other grans have had similar experience and can pass on some advice. I don’t live near to my family so can only be a listening ear for my daughter when I speak to her.

sodapop Tue 05-Apr-22 20:52:18

This sounds like a bit more than the usual teenage angst Gr8dame has he had any medical checks since the seizures stopped. It may be that he is suffering from a different type of seizure or unusual brain activity. I hope you can help him, doesn't sound like he is happy either.

Barmeyoldbat Tue 05-Apr-22 21:25:57

My daughter had epilepsy from the age of 4, they started as petit mal type where she would just stand and stare for a minute or less and then carry on as normal. It progress to an arm waving about and then to full seizures, she was never really controlled until she around 20 and was on a cocktail of drugs. I will say she never ever behaved like your gs, my son who didn’t have epilepsy behaved quite a bit like your gs but at around 16 and did eventually grow out of it. It could just be part of growing up. He must still be having checkups so it would be worth mentioning.

JaneJudge Tue 05-Apr-22 21:27:20

sounds like it could be seizure related

Blossoming Tue 05-Apr-22 21:34:45

I don’t have any medical qualifications but the ‘flapping hands’ is sometimes seen with autism.

Gr8dame Tue 05-Apr-22 22:42:38

I don’t think he is happy either Sodapop and I don’t think the rest of the family are either. I’ll look into brain activity and different kinds of seizures. Thanks for your thoughts.

Gr8dame Tue 05-Apr-22 22:44:50

Thanks Blossoming I’ll check that out.

Gr8dame Tue 05-Apr-22 22:46:34

Thanks Barmeyoldbat

Germanshepherdsmum Tue 05-Apr-22 22:56:55

I have had epilepsy since I was 17. After some years of experimenting with different dosages of drugs it was completely controlled and I have had no seizures since I was in my 30s though I must take the medication for life. At no time did I exhibit the type of behaviour that you describe.

Whiff Wed 06-Apr-22 05:27:58

Gr8dame has your grandson's blood been genetically tested? If not ask your daughter to get his neurologist to do it. I found out on Friday after 34 years of being ill with a neurological condition what it is because my new neurologist had my blood genetically tested and it's rare. And hereditary. I am now 63 got ill when I was 29.

sodapop Wed 06-Apr-22 07:41:21

Good to hear your epilepsy is so well controlled GSM
As you know people are affected by symptoms of epilepsy in so many different ways and there are related problems which may cause some of the behaviours described in the OP.

Germanshepherdsmum Wed 06-Apr-22 08:29:31

I have no medical training but would suggest that the epilepsy may have been a symptom of a neurological disorder which is now causing the current symptoms rather than their having been caused by epilepsy.

Barmeyoldbat Wed 06-Apr-22 08:55:47

Could even be a side effect of the drug he is taking, worth looking at

Gr8dame Wed 06-Apr-22 09:20:34

Drug side effects could certainly come into it and I think it my daughter would be advised to dig more deeply. It is my personal opinion that it’s sometimes difficult to get a straight answer from the medical profession for obvious reasons. Thank you so much for your input Barmeyoldbat it is very much appreciated.

downtoearth Wed 06-Apr-22 09:26:34

My daughter was diagnosed with severe petitMal at 15 with the start of her periods,also lip smacked,plucked and flapped,whilst totally unaware,this could happen whilst she was still able to walk,her friends also spoke how on several occasions she had to be restrained whilst crossing the roads.

The seizures where poorly controlled and where more frequent around her periods,she was taking maximum dosage of Epilim chrono.

K resented being controlled by the medication and the restrictions on her,and was a rebellious teenager,only settling down with an accidental pregnancy at just 18.

Pregnancy itself was complicated with the constant need for drug reviews and checking on baby,in fact on obstetrician stated that epileptics shouldnt be allowed to get pregnant.

Sadly she took her own life in 2004 due to the domestic violence,physical and mental of the childs father.
She was 23.

Gr8dame Wed 06-Apr-22 09:51:04

I am so very sorry for your loss downtoearth. Thank you very
much for your honesty and bravery in sending me this information.

DiscoDancer1975 Wed 06-Apr-22 10:27:05

He sounds very much like my DIL’s sister. She’s now 35, but was a total nightmare for her parents in childhood/ adolescence.

She was eventually diagnosed with severe Aspergers alongside the epilepsy, which just two years ago, had surgery for. As far as I know...she is generally better, with intermittent episodes from the autistic side of things.

She’s had no more fits as such, but does still get the ‘auras’ which so far haven’t been a problem.

So sorry to hear of your loss downtoearth. This was attempted by this lady too....a few years ago, but she was found in time.

Her life does seem to be a series of highs and lows, and her poor parents are exhausted. She still lives with them.

I would keep pushing medically for your grandson. New treatments are coming along all the time, and he hopefully will benefit somewhere down the line.

Take care 💐

downtoearth Wed 06-Apr-22 11:03:52

Gr8 hope it helps in someway,teenage years are the worst years to be diagnosed,and have to stick with the regime,no wonder they rebel against the condition.

Hope your GS can get past this,and enjoy his teenage years with the help and suppirt he has,I am sure he will.

Germanshepherdsmum Wed 06-Apr-22 11:11:15

I’m so sorry downtoearth. How devastating for you and what a very cruel remark by her doctor. Very different to the sympathetic and encouraging consultant I saw before becoming pregnant.💐

Hithere Wed 06-Apr-22 11:57:47

Has he always. being like this or it was a sudden change?

bonbons01 Wed 06-Apr-22 14:24:48

No person is epileptic, if a person has epilepsy they have epileptic seizures. A person is not a seizure.
There is no such thing as a grand Mal seizure, and there is no such thing as a petit Mal seizure. This terminology is defunct and has been since 1985. The terms were dropped by the ILAE (International League Against Epilepsy) because the definitions are inadequate. What does large storm or small storm mean? Neither have anything to do with epilepsy.

wildswan16 Wed 06-Apr-22 14:45:48

I think his parents need to speak to their GP in the first instance and seek advice whether his current problems could be in any way connected to his previous diagnosis. If he was under the care of a particular specialist then perhaps you could ask to be referred back.

It may be difficult to persuade him to see the GP himself, but clearly that would be the next step.

It may, however, just be a particularly stroppy teenager who has gone off the rails.

DiscoDancer1975 Wed 06-Apr-22 16:07:52


No person is epileptic, if a person has epilepsy they have epileptic seizures. A person is not a seizure.
There is no such thing as a grand Mal seizure, and there is no such thing as a petit Mal seizure. This terminology is defunct and has been since 1985. The terms were dropped by the ILAE (International League Against Epilepsy) because the definitions are inadequate. What does large storm or small storm mean? Neither have anything to do with epilepsy.

How helpful! Whatever you want to call’s causing the OP and her family a lot of stress, as it did my DIL’s family.

Mincing over wording is not the answer.

jaylucy Wed 06-Apr-22 16:29:38

From your description, I really would be surprised if his behaviour is a result of the epilepsy.
My niece is epileptic after an accident when she was a baby that resulted in her needing 2 blood clots removed from her brain.
My brother and SiL were warned she could possibly suffer fits at some point and she did - from aged 7 to 10 and again when she was going through puberty which carried on into adulthood.
Had her daughter when she was 17 and the neurologist taking care of her during her pregnancy was the same man that had operated on her when she was a baby! At no time did she display any of the symptoms your GS is exhibiting, so I think that there is a neuro diversical cause for his behaviour.
At 18, it is up to him to seek advice. He may well be struggling with his behaviour and may not want to be like he is .
Is there any way that you could persuade him to initially see his GP in the hope that he will be seen by a specialist ? Just be aware that it is a long wait to be seen. might be helpful ,, may also provide you with information and support and signpost you how to cope and the next steps to take with your GS.

bonbons01 Wed 06-Apr-22 16:33:27

It's not a matter of words DiscoDancer1975. Incidentally, how do you know whether epilepsy has or does cause me and/or my family distress? It is very unlikely, unless it is medication responsible, that the OP's behaviour has anything whatsoever to do with the fact he has epilepsy.