Childhood epilepsy- keto diet/ ask me anything / support

[spidermomma]

Just that really
I have 3 beautiful dc , 2 dc who have 2 totally different types, 2 totally different treatments and 2 totally different diagnoses

I'm your typical mum- I forget school bags sometimes, I don't always brush my hair on the school run, I have break downs every once in a while. We're all human and do what we can for our baby's

I'm doing this just for other mums as a support. Im a few years into this whirlwind condition and iv faced so many obstacles even to this day il still learn something new and iv never known anyone in a similar situation as me to relate with, vent with and just cry to? It's fine doing it to friends an family but they don't truely understand and theirs only so much I can do with my dh

So Questions some of us may have answers to, share the struggles we face, experiences we've had and even maybe recipies for keto and basically anything !!! I just want to try help other families as iv been quite lucky as to we're I am at now so if I can help someone by sharing something iv been through then it's another beautiful baby helped !

Hi! This is so kind of you to post this. I am yet to find anybody who understands what I am going through. I have just posted about this and so if it’s ok with you I will copy and paste what I said. Any words of encouragement would be so greatly appreciated.....

Our little girl was diagnosed with epilepsy at 3 months and is now 9 months. They are struggling to get her seizures under control and she is on the fourth lot of medications- at the moment she is on clobazam (Which makes her very sleepy and floppy) and epilim. She is developmentally delayed - by 6 months she could almost sit, was very strong during tummy time, alert, smiley etc but never used her hands appropriately. Since starting on clobazam she is like a different baby - can barely hold her head up let alone sit or do tummy time, no longer smiles very often, is tired, zoned out etc and still doesn’t reach out for things,. We put it all down the medication but after a couple of months we started to see some improvement but she has regressed again . The consultant has said that she thinks it is likely thar there is a neurological/genetic condition that is causing the epilepsy and the developmental delays. As we are yet to find out what the condition is (and apparently may never know ) they cannot give a prognosis or indeed confirm if she will even be able to walk and talk. So far the MRI/EEG and Microarray are clear. We are waiting on the epilepsy gene panel test. It is such a shock to hear that your perfect baby could have potentially life changing complications for the rest of her life and I feel so overwhelmed and lost. I am hoping for some words of encouragement from you amazing mum’s who have been through this. I would also love to hear from someone whose life is so much happier than they first imagined when given the news about their own child. Sorry for the essay.

@Leza1 oh no really? What has she tried. My ds is on epilim and clobazam. The clobazam I found worked wonders and my dd is on kepra

I'm totally here if you need any kind of support or just a chat because I know I can be so hard and theirs so many questions and it's bloody lonely I don't know anyone in my position to turn to

What type of seizures does she have ? Xx

Also @Leza1 I am sorry to hear. Sent that in such a rush before as I wanted to reply. I want to help you as much as I can. Over this last year and having 2 kids randomly start having seizures iv become somewhat of an expert haha! But honestly life with epilepsy isn't any different to mine or yours eventually unless it is something else like my ds. My dd is a normal little poop! She's a smarty pants and runs me riot and does everything everyone else can do. My ds is the total opposite and it's heart breaking to watch that... but he has a different condition that is epilepsy related x

It’s looking like she has an epilepsy related condition as well but we are yet to find out what. How is life with your DS? I am just hoping to hear that even with these extra challenges she (and we as parents) can still have a happy life. Just maybe a different life than we expected.

@Leza1 does she have a few different seizure types ?
Ds has a fab life just extra cautious when he's out and about because he's very wobbly and falls a lot , he's in mainstream school and has a normal life in that aspect! His learning and speach is delayed though
Dd on the other hand you'd never know, she's bright. On the ball, very advanced for her age. Both totally different x

They both sound so, so lovely in their own ways 😊

She has focal seizures mainly (a few absences) but they’re tricky to control and came on so young. She’s tired keppra and carbamazepine which didn’t work or agree with her. We are in that very tricky no mans lands where we don’t have a diagnosis and so have no idea what the future will hold but it is very clear that there is something else going on and she will have a diagnosis at some point. We couldn’t love her anymore, she really is our amazing, perfect girl. We just can’t plan for the future or think very far ahead (at least I’m trying not to!) because there are so many unknowns. How did you cope with at this stage with DS before you really knew? Xx

I think every child is perfect in their own way. My dd has focal and my son has both of those along with a few others. Have you looked at doose syndrome ? That's seizures that just don't react to medication

You have to plan for the future no matter how uncertain it is just to give you something to focus on and look forward to. It helps loads, my ds has doose syndrome and dd has just focal. You do get through it. I only got ds diagnosis 6months ago , to be honest this condition throws something new at me all the time iv learnt so much and found so much out it's so crazy. If you want to send me a private. Message I'm always here if you need me.

Do they have a pattern like how long in between do they come weekly or daily? How long on average do they last ? Xx

@spidermomma - thank you! I’ve just messaged you xx

Hi @spidermomma, thank you for this thread. Can I join if I am a Grandma not a mommy?

My DGS is nearly 1 and not long diagnosed with SCN2A IEE had seizures within 18 hours old.

We no its de novo but DD is desperate to have more children and knows that it is unlikely to reoccur in another child but worries about how to cope with another child when the outcome is not clear for DGS long term outcome. There seems little support in uk for this specific type and even his neurologist consultant can't tell us much from prognosis point of view.

What is the best support I can give her and DGS (for full disclosure I am step mom but NC with mom). We have him most Saturdays for her but I don't mean just looking after him I want to really help her IYSWIM.

Leza1 - so sorry for what you are going through, we are just relieved to get a diagnosis and whilst not much info at least his medication now seems to have slowed the seizures for us.

@AgainstTheCurrent oh no I'm so sorry to hear this. Bet that was so scary for your dd and everyone else for that matter. That's such a. Younge age !!
May I ask what is SCN2A? Also what medication is she on and what is her seizure patterns like now ? As a parent their obviously heart breaking to watch and deal with but you become "used" to them so you're a lot calmer and you just get on with it as it's now part of our daily lives. The best support you can give. You are!! Supporting her, been a shoulder to try on and just asking is SHE okay , also giving her that break on a weekend from her dc is such a huge breather just been able to sit and not be on egg shells if their having another seizure. She's very lucky to have that help. I have 2 dc with epilepsy and never get a break ! But as for another child you can't live in fear, you take things as they come and you deal with it
Hope your okay as a grandparent as you feel helpless not been able to do more I bet xx

HI spider, yes of course, SCN2A is a type of genetic epilepsy that is caused by mutation in the genes, in our case it was a mutation at conception not passed through the parents genes - this is really positive as there is a less than 1% chance of it happening in future pregnancies.

It was so scary when first born as none of us had had much experience with epilepsy and at first they thought LO had brain injury and was hypoxic so sent for cooling therapy. Seizure were happening with having of 70 in 24 hour period. Used to be on Keppra and they slowed down but at 3 months was having them every 40 minutes until went into status epilepticus with a seizure lasting over 3 hours.
Since diagnosis seizures have got better control taking clobazam & carbamazepine but we are hoping to reduce down one of them over time.

I am really sorry you don't get a break, I don't know how you do it . I just feel that I should be able to give more emotional support, I just worry about what to say about it all really as we don't know what future holds and I am a bit of a control freak in as much as I like to be prepared and ensure that I can help her with what's to come.

That is such a low chance she really shouldn't let that stop her.

What type of seizure are they? My oldest was having 60ish a day but they was myoclonic seizures
It is so frightening and I bet the whole family is on egg shells I feel as though some days I'm just sat watching and waiting for the next one to happen... breaks your heart but all you can do your literally doing. My daughter is on kepra and she's not been as bad. Slowly creeping back in though and my son is on epilim clobazam and topamax. We've just started the keto diet. Maybe this could be an option? Specially why their so young it's easier to change the diet now then when their fully used to foods they can't have no more.

Keto is usually best for epilepsy even if it reduces them but it's kind of a mind ease knowing theirs something their genetically xx

Sorry spidermomma, been a bit hectic here last couple of days. Yes it is heartbreaking, I suppose she is very lucky really that she does get a break a lot, I never really thought of it that way.

Tonic Clonic but sometimes just tonic or myoclonic and absence seizures.

The condition tends to lend itself to having varying seizure types.

I do think keto would be great, little nervous to suggest to dietician as they weren't happy we got the feeding tube removed.

I really hope keto works for yours, interestingly ours started on Kepra as we were told broad-spectrum, but also told us drug resistance is quite common and the new meds seem to be working better. Trying to do research as well into cbd, even though it isn't really widely used here.

Oh no that's not good. I'm lucky we have the big ones covered so now my ds only has myoclonic and absent But dd still has hers yet

When you say your dgc has a lot of seizures still. Are the tonic clonic ones still not controlled either ?

I think with all the seizure types sn been drug resistant I'd definitely look into the diet as that's now meant to be given pretty early on as an option as it has the best rate to work then meds
Also look into a condition called doose syndrome. It's a form of epilepsy thats just drug resistant and as few seizure types
Cbd is always an option and I have looked slightly into this, my only concern was if their on some medication (epilim, clobazam....) it can basically ruin kidneys an liver if you have the cocktail of one of them with cbd. X