Night time Seizures and Dev Delay

[AEBB]

Hi, I'm new to Mumsnet (in fact all forums for that matter!!) and hoping for a bit of advice/suggestions/opinion about my little girl, 2yrs 2 months.
She started with seizures in her sleep in Summer which set her back in terms of feeding, drinking, comprehension, sleep etc. etc. She's not walking, not talking (making noises tho' and now has two makaton signs) etc.
But we'd started the process of a dev check before this happened because she wasn't meeting milestones.

We don't have a diagnosis but keep being told by neurologist/paed that there's a condition which they can't identify which is causing the seizures.

My main reason for posting this is really because my daughter is socially bang on target in many respects so she's a funny mixture of terrible twos suddenly and 12 month old. She's started biting herself regularly and high pitched screaming. I guess it's when i don't understand what she wants straight away or when she can't do something. It's rarely when i won't give her something or take something away. But she's been doing it so much recently (yesterday it was almost every ten mins at one point)I suppose i'm just struggling with trying to make sense of what's 'normal' and what's not. Or maybe it's just a case of accepting it as what is normal in our household and just getting on with it.

Any advice about how to deal with this sort of thing would be gratefully received. And if anyone has a child with nightime seizures tonic/daytimes absences/atonic seizures too and aren't responding to the medicine, i'd love to hear from you!

I finally bought a toddler book (the one by Dr. Tanya Byron) and whilst it's good for many, it's bloody annoying for those who might have other problems! Praise good behaviour and ignore bad sometimes just doesn't cut it!

Any book suggestions would be brillant too!!
)

Hi AEBB. DS1 has nighttime seizures and we are on our fourth attempt at medicine now. The neurologist believes that it is def epilepsy, but nothing is showing up where it is starting from , so they are almost clutching at straws with which medicine to give him.

DS developed fine until about 4 when he started schoool. He is a little bit behind at school but is also showing dyspraxic type signs. His sleep is often so broken that I'm not surprised that he is struggling at school

We have had a good spell recently but just last week he started having tonic clonics in his sleep and not breathing I have finally got round to calling muir maxwell truss about the free epilepsy monitors they can provide.

Must dash now but will post later

Hi Fatzak, thanks so much for your post. Does your little boy sleep in your room? How do you know when he's having a seizure during the night? My daughter (EB)has tonic clonics too (tho', like you, we've been on a good spell too recently - best yet, but can only think it's associated with a growth spurt or soemthing as medications have changed recently..). We've just put her back in her own room and it's been pretty hectic! Fair bit of to-ing and fro-ing to say the least. Was always going to be tho, i think. Does the free monitor only pick up jerking movements. EB has both non-jerky and jerky TCs.

I'm sorry to hear he's also not breathing with the TCs tho. It makes it so stressful. I can understand that one too. EB also gone throug hlots of med changes to try to fathom out what might work. WE're down for the Keto diet, so waiting for an appointment now. Have you tried that at all?

I think that if this lot of meds fail, then we will be going down the keto route. We are also going to be referred to Great Ormond Street to see if they can find any evidence of them being frontal lobe seizures which means that they could possibley remove/detach the "faulty" part.

DS in his own room but when he is having a bad spell we put his bed in our room so we can listen out. I am certain that we miss a lot of what is going on as often it's non jerky and it doesn't wake us. He usually has a huge gaspy intake of breath which wakes me up to something going on! I think that the monitor just picks up repetetive movements but the lady at Muir Maxwell told me that the same company make an apnea alarm which detects non breathing - must give them a call to find out how much they cost.

Have you applied for DLA? The epilepsy nurse suggested we did - I just wouldn't have given it a thought to be honest but we got higher rate care due to the amount of time we spend up and down during the night.

Thing is as an adult who has nocturnal seizures, who also has an 11yo DD with same (non-jerky night-time seizures and absences), I know that you can't use both the TC monitor and the apnoea monitor together at the same time (it's a complete bummer, but hey ho). The development is and will be slower, my daughter's has been, she needs a lot of extra help at school, she is catching up, her speech caught up at 7 (to be normal speech aside from a few words she still mispronounces), her reading at 9 and her maths is catching up at age 11 now she's in secondary. Her paeds neuro tells me that because of the seizures at night, her brain is never completely 'resting' so she's going to be 'slower on the uptake' as he puts it. I feel the same after a nocturnal seizure, it's like trying to think through a marshmallow whilst simultaneously feeling like you've been run over by a truck. Is it any wonder that a child coping with this is short tempered if I as an ADULT get short tempered...