Supporting a deaf/blind epileptic two year old?!

[pippi_89]

Before I start, I'm sorry if this turns into a ramble!

Our nephew (SILs son) was very recently diagnosed with a form of epilepsy. He started with absence seizures a few times a week which progressed over six months to 6/7 a day of increasing duration. He was admitted to hospital but went into an 8 minute long seizure. The doctors administered a rescue med but it didn't have much effect. After this his seizures became focal seizures (he is now more aware when he has one but his eyes twitch uncontrollably) and were happening, at the worst, 73 times in a day. This went on, up and down over two weeks, he was transferred to a specialist hospital, then back again. He is now at home on the right balance of meds (still 10-20 seizures) but he can barely function and has to nap at least 4 times a day. His MRI results showed that the audio/visual centre of his brain is not developing and this damage is causing the seizures. We are waiting on the consultants' decision but it seems most likely that they will have to remove the damaged area to save the rest of his brain. They don't seem entirely sure that this procedure will completely eradicate the cause of the seizures but it will at least make them controllable. It will, however leave him both deaf and blind.

He seems to be taking it all in his stride up to now, he doesn't seem to be too upset by the seizures and he actually loved his hospital adventure! I cannot express how amazingly SIL and her husband are handling the whole situation but we are all terrified to even talk about what it will be like after the surgery. How will we communicate with him or teach him anything when he can't see or hear us? He is only two and already shows signs of delayed speech and language skills (with hindsight, an early sign of the brain abnormality) and we have been advised that he may present with further learning disabilities as he grows up.

Does anyone have any sort of experience that could help us here? I have started looking a bit online but all I can see is teaching communication for deaf or blind, not both. To be honest it's still too scary to think about for too long but I feel like we should be getting prepared. I have been a teaching assistant with special needs children for the last 8 years so I think I feel like I should be handling this better or be more help to SIL. I have worked with children with all sorts of disabilities, including all those nephew is suffering with. Just not all in the same child, and not a member of my own family. I can't get my head round it! I just feel cold inside every time I think about it! I know SIL really needs support and she is looking to me and my partner but she is already handling it better than I am and I just can't shake it off!!! I think we just need a bit of hope.

Sorry. I'm done now.

 

[FAB mama]

So sorry to read about your nephew. I can't imagine what your family is going through. I don't have any experience with it, but have you heard of Helen Keller? She was a famous deaf and blind American (famous here… not sure how much in other countries, sorry!). Her story may give your family some hope.

 

[Reid]

I don't have any experience at all with this didn't want to read and run
the only thing I can think of is to really focus on touch and smells I'm guessing he has vision at the moment and or hearing? If so anytime you see him or close family see him go down to his level and encourage him to touch everyone's face. I think perhaps alot of sensory type toys like the ones you would use with autistic children or children with sensory issues different textures ect. Another thing that would maybe help is a snug type beanbag something he would sort of sink into so he's got support round his sides would perhaps help him feel safe and secure.
Ask with the doctors that are dealing with it all if there's any specialist support available to help him and his family don't no if any of thag would help I can't imagine how hard this must be really hope they can get some help for there little boy and hopefully someone here can offer some good advice xxx

 

[pippi_89]

Thank you! Yes he can still see and hear at the moment. The doctors believe he has lost his peripheral vision but it's hard to tell when he can't understand what they are asking him. That's all we thought too Lynne1983. I've been looking into adapting his playroom but I think she's more worried about how he's going to learn braille or sign or whatever. They have an appointment with the specialists again on 21st so she will ask them about it then. We are trying to spend as much time with him as possible but I just feel like we should be doing something more. The doctors are talking like, don't worry too much about trauma, he's so young he won't remember what he's lost, sort of thing, but surely the transition is going to be tough for him, even if he is two?! Everyone's talking about what's wrong with him now, and they will tell us what it will be like when he is a functioning deaf/blind child, but no one has mentioned the bit in between, if that makes sense.

 

[AngelofTroy]

Hi, I am also a teaching assistant supporting children with special needs, I've found the charity Sense an enormous help in understanding the world from a deafblind point of view. www.sense.org.uk/

I hope your nephew is able to adjust.

 

[annanouska]

Please come and join us on FB epilepsy in babies toddlers and children. It's a really nice community with lots of rare conditions represented etc. my so. Initially presented with absences and then focals now we hav had drops and also myoclonics. His mri shows abnormal Whitman matter changes on the brain but we don't know much more than that and they will re scan in a few months to see if any change. He also has other issues going on but largely stable on his medicines. I would listen to all the options from consulantsnt but ask extra things too don't feel pushed into deciding on the treatment until u have had time to research it all. I'd imagine the transition will be scary at first but witht eh right support he can co tongue to be a happy healthy boy x

 

[pippi_89]

That's the hope! Yes thanks, we will join FB. The community support would be fantastic.

 

[SoBlessedMama]

Hi Pippi, I ran across your thread a couple of months ago, and just happened to see it again--I'm so sorry your family is facing such a tough time, but it sounds like you're all handling it with grace. I hope your sweet nephew is on the road to recovery, and is thriving in whatever situation he currently faces. How is he doing? You sound wonderfully supportive--I'm sure you've been a huge blessing to him and his parents. I hope you've found the support you need as well!

 

[deafgal01]

There's the possibility of using "tactile sign language" to communicate if his hearing is still an issue. That basically means you would use sign language to communicate with him but he would have his hands over your hands to know/understand what you're saying.

 

[pippi_89]

Hi guys, thanks for the thoughts

The situation has actually improved drastically!!
The seizures did flare up again, he went through a rough patch for a while, high doses of steroids and other scary things but they got to the bottom of it. He has a condition that usually only presents in elderly patients, which is why they missed it initially. They have nephew scheduled for a different surgery in August which should lessen the seizures, this one will only affect his peripheral vision, but we're pretty sure he already lost that a while ago so...? Best case scenario he will be seizure free in 12-24 months, worst he will be no different from how he is now.

It's looking up

 

[SoBlessedMama]

What a great update!!!!!!! Praying he continues to do well and that the new surgery reduces/eliminates the seizures.

 

[deafgal01]

That's a relief to hear of a positive update! Glad to hear it's going to get better after this surgery.

 

[Reid]

Hi guys, thanks for the thoughts

The situation has actually improved drastically!!
The seizures did flare up again, he went through a rough patch for a while, high doses of steroids and other scary things but they got to the bottom of it. He has a condition that usually only presents in elderly patients, which is why they missed it initially. They have nephew scheduled for a different surgery in August which should lessen the seizures, this one will only affect his peripheral vision, but we're pretty sure he already lost that a while ago so...? Best case scenario he will be seizure free in 12-24 months, worst he will be no different from how he is now.

It's looking up

Aww great to here some positive news hearing about your wee nephew really tugged on my heart xx