Brother with Downs Syndrome & Dementia

[lucyhchester]

I have a 46 year old brother with Downs Syndrome and dementia. He has complex health issues but has recently been having more and more regular seizures. They last seconds but we are concerned about the potential damage they could be doing. Does anyone have experience in this area? Thanks!

[Jofisher]

My son has severe epilepsy and is severely disabled but not with down’s syndrome or dementia so it depends what you need to ask as to whether I can help you.

[lucyhchester in reply to Jofisher]

Hi Jo, thank you, we're concerned his seizures are becoming more regular and that it could be causing damage. We feel he should be on medication but at the moment they're investigating further with scans....

[Jofisher in reply to lucyhchester]

Ah ok maybe ask for a meeting with the consultant he’s under to discuss your concerns. There’s always the epilepsy society helpline as well. Sorry to hear your brothers suffering with all these issues it’s so hard isn’t it. I do hope they can sort this out sooner rather than later for him and for all of you too.

[lucyhchester in reply to Jofisher]

Thank you Jo, he's in hospital at the moment so we're speaking to his consultant and asking for next steps, it had been misdiagnosed as low blood pressure and these fainting episodes but they now realise it's seizures he's having.

[baggybert in reply to Jofisher]

Hi, My brother is 56 and has Downs Syndrome and has recently been diagnosed with dementia, which is very common and almost inevitable in Downs. He has also had epilepsy for many years. I am the main carer for my brother since our mum died 2 years ago. After she died, my brothers seizures got much much worse, stress and anxiety and trauma can make epilepsy worse. Your son needs to be seen by a neurologist, although I am guessing he probably is, there is such a close link between Downs, Epilepsy and dementia. I wish you well, its very very tough, I know only to well. Its a very lonely path being a carer.

[lucyhchester in reply to baggybert]

Thank you for the advice, it's actually my brother rather than son so I'm feeding the info to my Mum too. He's currently still in hospital so I will make sure the Epilepsy link investigated. I can understand how lonely your role must be, are you supported by any charities or networks?

[LDAutie]

hi lucyhchester i have non verbal autism and mild learning disability but i also have health issues as well including severe lifelong epilepsy,quite severe physical disability caused by over restraint and severe sleep apnea.

the epilepsy runs in my dads side of the family,one of his relatives died during a seizure (possibly a cousin,i never knew him) and his younger brother in dublin has only just been diagnosed with epilepsy and hes been put on one of the drugs im on.

i can tell you only from my own experiences in how its affected me, but when i was a very young toddler i developed status epilepticus, cluster seizures and just plain GME,i had had one dream in my entire life before my epilepsy started and once i was hit with it i stopped dreaming-even to this day ive never dreamed,and an EEG revealed my brain wasnt going into one of the main sleep cycles deep enough so for me that coud explain it...or not.

i lost my short term and working memory and both these memories are now non existent- i was told by my old learning disability nurse that each seizure i have causes damage to differernt memories and she didnt recomend bothering going to a memory clinic as they arent trained in memory loss through epilepsy,theyre more for age related loss.

i still experience all of my different forms of epilepsy but status seizures not much,my last status seizure was thankfuly last year and my support staff who i owe my life to got me breathing again.

im on three anti epileptics-my neurologist is a great doctor and also very funny, he sees me for my epilepsy and peripheral neuropathy and nerve damage.

i have no epilepsy rescue meds though as my support service isnt able to be trained in it so they have to phone an ambulance and just follow my epilepsy protocol.

after a seizure, i dont know anyone and i dont know where i am or who i am,i am very confused, i dont even know who my cat is and he is my baby,for me this hangs around for about four hours but slowly starts to get better from when ive been coming round an hour later.

one of the most common questions you will see come up on epilepsy support groups is memory loss-whether its caused by epilepsy itself or by medications (for some of us it was obvious),it can make behaviors that challenge worse, and it can be triggered by playing computer games and other lighting (ie photosensitive epilepsy,which many of us are not), i hope you manage to find a good specialist like i did. 🙂

[lucyhchester in reply to LDAutie]

Thank you so much for your reply and I'm sorry to hear you have been struggling too, it sounds like you have a very supportive consultant and have found a way through it. Thank you for being open and sharing your journey with me.

[learner01]

I hope that your brother has also been assessed by a heart specialist. People with Downs Syndrome often have heart problems. A neighbor of mine kept ‘fainting’ and the cause turned out to be that his heart was stopping for a few moments and then restarting. His only symptom was the ‘fainting ‘. He was fitted with a pace maker and had no more episodes.

[lucyhchester in reply to learner01]

Thank you, yes he's actually wearing a heart monitor for the next 24 hours so they can assess him.

[Sarah_Mencap]

Hello

I hope the replies on here help a little. This type of issue does come up on here quite regularly - you are not alone.

Please do also talk your brother's GP / consultant and ask more about this. It really needs a professional to look at it properly.

Best wishes.

Sarah

[lucyhchester in reply to Sarah_Mencap]

Thank you, we have just been a little round and round in circles and the "professionals" quite honestly haven't seemed to have experience in Downs adults with dementia, it often feels like we're feeding them suggestions and research.

[Sarah_Mencap in reply to lucyhchester]

Hello again

That is really disappointing to hear.

I have been asking around about this. Have you seen that the Downs Syndrome Association has a closed Facebook group for families and professionals who have an interest in Down’s syndrome and dementia – details available by emailing [e-mail]. It may be worth seeing if they can help.

There is also a bit more information on here - downs-syndrome.org.uk/about...

I hope this helps a little.

Sarah

[lucyhchester in reply to Sarah_Mencap]

Thank you Sarah, I've found a Facebook group on Dementia/Downs which has been hugely supportive and even spoke to a sibling going through very similar situation, I really appreciate the info!

[Brightlight1]

My son has seizures and it is good to determine what kind of seizures they could be. If they are seizures that can lead to tonic clonics, the neurologist is best to navigate this field. If he is having severe seizures, we have been recommended by our neurologist that it is best to try to control them with a drug that has the least side effects as the repeated seizures create a rehearsed pattern for the brain. That being said, my son has myoclonics every night unmedicated for two years since it was seen as minor and the other drugs did not work. They caused weight gain, fatigue and anxiety for the few we tried. And it did not stop them. Then he had a tonic clonic a few weeks ago, the first one in 13 years. So we need to find a treatment so the tonic clonic does not become a regular occurrence. It is good to join an Epilepsy association in your area to help you feel not alone as we did. It is very helpful.

[Maisymop]

Hi there, I know of two groups that might help, firstly the ‘trisomy 21 research’ group and the second, TNI (targeted nutritional intervention) regression in Down syndrome. Both groups I connect with through Facebook. Both provide a wealth of research and decades of knowledge that focuses on Down syndrome only. Also ‘The Conscious Pod” website is very interesting and also just for carers/parents of those of all ages with downs. Hope you find these helpful.