New to CWE & epilepsy, here for my 3 year old

[Leprechaunsam]

Hi everyone.

My name is Sam & I am mommy to an amazing little girl called Amelia-Rose. She is 3 on Wednesday 25th May. Last Friday we (finally) saw a consultant who has said he is fairly certain she has epilepsy. It's his specialist area so I feel comfortable he knows what he's doing (although part of me is still hoping he'll be wrong even though he was clear it was where he was putting his money)

Her first seizure was 28/2 but she has had several since. Consultant has sent her to have bloods, ecg & eeg (standard one first & then a sleep eeg?).

Still trying to get my head round it all. From research her 'normal' type seizures point to simple partial seizures (she thinks she is falling even though she's not, her eyes are huge, she's petrified, she clings to me for dear life, she goes hot & clammy & her legs twitch uncontrollably, she is also conscious throughout & does have a recollection of it, once ended apart from being tired & a bit clingy she's completely back to normal self)

On 13th May though she had a different type where she was sat on my lap & she went a bit limp & her whole body convulsed/twitched about 7-8 times. Was over as quick as it started. According to consultant this is a worse type fit & I should've called ambulance but I had no idea & as she was OK afterwards I didn't (feel guilty as hell now but just didn't know). Haven't narrowed down what the name of this type of seizure is yet though.

I've never known anyone with epilepsy before so I'm feeling quite scared & confused as there seems to be so much to learn but found this group & thought joining would help me with learning & support as we continue on this journey

Thanks for reading if you've got this far.

Hope to be a valuable member

Sam X

 

[Dutch mom]

Welcome Sam, from another mom to a child with epilepsy, on this amazing forum with so many people willing to help and to support you.

I can understand and relate to you concerns about your daughter having these seizures and you must feel very scared and helpless because you can't do anything to influence what's happening and must feel like you can't protect your child from what's happening to her. Have been there myself.

As for calling 911, there s no need to this this when your kid is getting out of the seizure herself and the seizure isn't lasting longer then 5 to 10 minutes. Did you get any emergency medication to stop the seizure in case it lasts to long (diazepam or clonazepam for instance?) If not, ask her doctor about this. Having emergency medications to stop seizures can prevent unnecessary hospitalization and helps to stop a seizure much quicker than when you call 911 and have to wait for an ambulance, while in that case the probably are going to use the same kind of medication to stop it. It's very common for people with E. and parents to have their own emergency medication with them for in case a seizure doesn't stop quick enough.

Is your daughter currently on any medications to try to control her E.? Emergency meds are not the same as daily meds.

 

[Leprechaunsam]

Thank you for your reply

We haven't been given any medication, emergency or regular. He said that they won't give medication this early in the diagnosis as there are many side effects & being so young he won't give meds until all her results come back as don't know what she needs. I will bring it up with him again though, thank you for the advice. I'm still so clueless

I was confused about lack of meds, & as you says even if I had called 999 it would've finished before they got here, & that's even if they were round the corner.

We live in the UK, are there many geographical differences between how it is treated? We may wait 6 weeks before eeg although he's said the other ones should be sooner.

I waited so long for even an initial consult. It's all the waiting that's causing the biggest stresses, especially as it's my little girl. She keeps telling me how scared she is of falling again. How on earth are you supposed to explain this to someone so young? How old was your little one when you first got a diagnosis?

 

[masterjen]

Welcome to CWE Leprechaunsam!

As far as medication goes, it is common for doctors to not want to medicate before all the test results are available but it comes down to how soon those tests will be done. There is a theory that the more seizures one has, the more likely they are to have more seizures. I don't know if this is always true, though, and it would be highly influenced by how often a person has seizures and how long the wait will be to get the testing done. The other thing I would suggest doing in the meantime is insisting on having an emergency medication as Dutch mom mentioned in the event of a prolonged seizure.

Something else that may speed the process is recording a couple of your daughter's seizures easier to do I'm sure if someone else is present so you can tend to your daughter and comfort her. It may also be worthwhile setting up a baby monitor that can record for several hours at a time to determine if she by chance has seizures in her sleep. It would help to do this for several nights. Again, helpful for the doctor.

 

[Hobbes]

Hi Sam,

Another parent here. Know that you are not alone in this. I don't want to repeat the same great advice above. I don't know what your specialist thinks the emergency dept can really improve on if the seizure has resolved quickly, would they do an EEG right then? I've spent many wasted hours in the emergency department for a kid with a chronic condition, generally emergency departments are only helpful in emergencies - seizures that don't stop are an emergency.

There are waits in the US for appts and testing, doesn't sound all that different. Commonly people with partials should also get imaging at some point to see if a cause can be easily determined. Something to ask about if they continue to believe it's partial epilepsy.

Many happy birthday wishes, three is a great age!

 

[N Sperlo]

Hi Leprechaunsam, and welcome.

I'm not very familiar with mayclonic seizures because I have never had, or seen them in person. If your daughter is twitching and remaining conscious, this is may be an explanation. Anyone feel free to correct me if I'm wrong.

May 13th sounds like a very short tonic/clonic seizure.

Others have commented on why doctors aren't always comfortable giving medication before they feel a proper diagnosis has taken place. I can understand the want for an emergency medication, but keep in mind those medications are (from what I've seen while working in a pharmacy) usually to be used in case of a seizure lasting over five minutes. The most common I see is a rectal diazepam gel. It come prepared in a syringe and ready to go. I don't need to paint a picture on how that is used.

I think the best thing you can do as a mother, is understand what your daughter is going through is terrifying. She will want comfort in knowing she is ok. The more calm you stay the better she will fee. Honestly that even works with adults in the same situation.

Hopefully you can get this under control and you won't have to worry about it anymore.

Best of luck.

 

[Dutch mom]

I agree on waiting with daily meds until the diagnosis is more clear because types of seizures and medication need to be matched carefully, especially in young children. Unfortunally myoclonics are a hard type of seizures to control with meds. But that's different with emergency medication, having a child with E. means you're always have to carry emergency meds with you just in case they are needed. Admitting them quickly when needed is always better than call out for an ambulance and wait for them to do so. And in children seizures tent to change and develop in other types an patterns together with the development of the brain and hormones etc. so prescribing emergency meds with clear rules and guidelines off how and when to use them is a necessity IMO.

I read and wrote for many years on the UK Matthews Friends forum (Facebook group now), it's a site about the ketogenic diet in particular and that is a treatment to early for you to consider now. But just knowing about the diet being a treatment is never too early and you sure can have a lot of help and support about anything concerning epilepsy and children there, so subscribing can be very useful. There is so much knowledge, useful information, experience and willingness to support you in that group of wonderful parents, I highly recommend their group to any other parent to a child with E, especially when you are from the UK.

http://www.matthewsfriends.org/

My son's story is on there, he started his 'epileptic career' about 14-15 years ago with myoclonic seizures at age 2,5. I posted his story on the MF website 10 years ago but it is still actual because he's still on the diet. See http://www.matthewsfriends.org/about-us/our-stories/children/jonis-story/

 

[Hobbes]

I didn't read her description as specific for myoclonics, why not some motor partials? I know there is a lot of stuff I don't get about those. My daughter has controlled myoclonics and from descriptions I've read they would match negative myoclonics (generalized) so maybe that's just an easier thing. After I read there are partial and generalized myoclonics my head kinda stopped. Are all types of myoclonics traditionally difficult?

 

[seagull]

Both parent and e myself.I do remember locking horns with doc it took my daughter having sz in out patients.
My daughter was put on tegratol immediatly then Lamotrigine she was not much older than your daughter.I was lucky she went to Nyce eventually they dealt with her e.she free from it now

 

[acshuman]

I'm Sure You Want to Be Safety Concious!

Leprechaunsam,
WELCOME to CWE!!
The members of CWE want to be as helpful as possible!
You daughter is three years old right now, but you meed to think about something that can cause problems if it is done in the case of a child. This is being a parent who is too much of a 'helicopter parent'. It can feel as the proper thing to do for you when it comes to keeping an eye on your child and not letting that child get out of your sight. There can be complications when something like this is done. It may not be apparent at the time a parent is doing it, but a child is able to tell when they are being treated differently than the other children around them. It is possible for a child to develop a feeling of resentment when they are not allowed to do things that their friends are allowed to do. The parent(s) never intended for this to happen but it still can happen without any kind of intention.
Your daughter will need to do some things that you may feel she shouldn't do. You have to realize that your daughter will want to do some things and you are going to have to allow her participation. You have to let the people who she is going to be with know that there is a possibility of something happening that they may not understand, but need to know about, to make it safe for your daughter to do things with her friends.
If any of the parents of her friends refuse to accept that your daughter needs some extra attention from them, it is likely that those parent's children will be told negative stories about your daughter. You can distance your daughter and yourself from this type of parent. On the other hand, if this child is an important friend fro your daughter, you can try and inform these parents that it is not impossible to learn what they need to learn from you.
I have lived with E for 50 years. I have seen many parents of people who I thought were my friends turn into the type of people that I would never want to be around, with the children showing many of the same feeling that their parent(s) had!

AcsHuman

 

[Leprechaunsam]

Thank you everyone. Much appreciate the advice & support. It's comforting to know this is clearly a place I can go for help & understanding.
Have took on all the things suggested so shall be looking into those & speaking with the consultant asap
Thank you for the lovely welcome x

 

[acshuman]

Every Member Is Important to CWE!

Sam,
You don't have to hope to be a valued member, you ARE important as soon as you join CWE! :clap:
Just remember to feel free to ask a question any time you need an answer and vent any time you feel like you need to!

ACsHuman

 

[seagull]

Asehuman I think things better these days as to when you and me first had it

 

[acshuman]

Medical Knowlwdge About E Has Risen Exponentially!

When a person who was diagnosed w/E 20-30-40-50+ years ago, the number of medications that were available to treat E was SO limited! If a person who was diagnosed that long ago looks at the difference in the number of meds available to them then to the number of medications available today, to treat E, they would say 'Why couldn't some of these meds been around for me to use when I was diagnosed?'. The many meds that are available today is great, because the meds from today are able to treat many of the variations of E that the old couldn't treat properly!
I know that I can remember hearing about and seeing a much higher percentage of the people w/E who had 'toxic med levels' in their bodies.
Medicine's capabilities has advanced so much, in the treating of E, during my life and that has been something I have enjoyed watching!
Many times I think this way: 'The people of today don't know how lucky they are to have what they have when it comes to what is available to them from today's meds to treat E.'
Of course to be able to feel that way and get that treatment they have to have some type of insurance or enough money to pay for their treatment themselves! :twocents:

ACsHuman