Hello everyone I'm a new member very glad to be here

[Bwlgirl33]

Hi everyone I am mum to gracie-may who's almost 5 .she has complex partial seizures that started just after her 1st birthday although we suspect it might have been earlier. She was 5 weeks premature and had a very traumatic forceps birth ...face presentation baby .she had severe bruising to her face and left side of head. She's been seizure free for almost 2 years on trileptal. Due to start the weaning process shortly and I'm worried how it's going to go. She had 5-7 siezures daily before meds.a total of 327 whilst waiting for her hospital appointment...her mri was good but her eeg said she had continious spike and wave that slowed with sleep.her doctor is not very helpful anyone know what kind of chance she might have of outgrowing? Thanks for reading I really appreciate it x

 

[Bwlgirl33]

Hi everyone I am mum to gracie-may who's almost 5 .she has complex partial seizures that started just after her 1st birthday although we suspect it might have been earlier. She was 5 weeks premature and had a very traumatic forceps birth ...face presentation baby .she had severe bruising to her face and left side of head. She's been seizure free for almost 2 years on trileptal. Due to start the weaning process shortly and I'm worried how it's going to go. She had 5-7 siezures daily before meds.a total of 327 whilst waiting for her hospital appointment...her mri was good but her eeg said she had continious spike and wave that slowed with sleep.her doctor is not very helpful anyone know what kind of chance she might have of outgrowing? Thanks for reading I really appreciate it x

Oh sorry forgot to mention she has behavioural problems although doctors say it's not because of her birth I am convinced as it's left sided same side as the bruising. Is that even a possible cause?

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[Bwlgirl33]

Hi everyone I am mum to gracie-may who's almost 5 .she has complex partial seizures that started just after her 1st birthday although we suspect it might have been earlier. She was 5 weeks premature and had a very traumatic forceps birth ...face presentation baby .she had severe bruising to her face and left side of head. She's been seizure free for almost 2 years on trileptal. Due to start the weaning process shortly and I'm worried how it's going to go. She had 5-7 siezures daily before meds.a total of 327 whilst waiting for her hospital appointment...her mri was good but her eeg was very unusual said she had continious spike and wave that slowed with sleep.her doctor is not very helpful anyone know what kind of chance she might have of outgrowing? Thanks for reading I really appreciate it x

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[Nakamova]

Hi Bwlgirl33 welcome to CWE!

It's really tough to make predictions with epilepsy since it's very individualized. But since her doctor is unhelpful, I recommend you push to see a pediatric neurologist, someone who as a lot of experience with infant and childhood epilepsies.

You might also be able to find additional info and support at: https://www.facebook.com/My-Child-has-Epilepsy-256691444381142/


It's possible that the left-sided behavioral issues caused by the seizure activity. What kinds of things does she do?

 

[Bwlgirl33]

Hi nakamova she is very hyper more tierd she is the worse it gets ...shes really mad on times kicks hits pulls hair ECT...laughs hysterically half the time she doesnt answer when I am talking to her...shes very difficult to get to sleep. It is like she only got two speeds and nothing in between. Was issues in school whilst in nursery now in the next class she has been called spoilt stubborn and not listening mind you the supervision there needs addressing as she got into the school pond and removed the filter? Neuro is good but he doesn't have any answers .her doctor just says do you want her to be labelled ? It is like when she comes home she releases all her frustration....she will only bathe in cold water too.....very strange? She also gulps a lot in her sleep

 

[Nakamova]

Some of the behaviors you describe might actually be partial seizure symptoms: Running, screaming, crying, and/or laughing can all be partial seizures, even if she appears alert. Does she seem tired or sleepy afterwards? Sometimes that can be a clue that a seizure has occurred. "Not listening" can also be an indication of a partial seizure or absence seizure. If she is still having seizures, then it may not be a good idea to start tapering the med.

The gulping at night might be an indication of a sleep disorder like apnea. Any chance she could have a sleep study done? Certainly her pediatrician should be made aware of it. Apnea can be associated with seizures, but even if it isn't, it might be a sign that she isn't getting good quality sleep. Poor sleep can lead to all sorts of behavioral problems and make existing ones worse.

 

[Bwlgirl33]

Some of the behaviors you describe might actually be partial seizure symptoms: Running, screaming, crying, and/or laughing can all be partial seizures, even if she appears alert. Does she seem tired or sleepy afterwards? Sometimes that can be a clue that a seizure has occurred. "Not listening" can also be an indication of a partial seizure or absence seizure. If she is still having seizures, then it may not be a good idea to start tapering the med.

The gulping at night might be an indication of a sleep disorder like apnea. Any chance she could have a sleep study done? Certainly her pediatrician should be made aware of it. Apnea can be associated with seizures, but even if it isn't, it might be a sign that she isn't getting good quality sleep. Poor sleep can lead to all sorts of behavioral problems and make existing ones worse.

I will certainly mention to the Neuro.i didn't know any of that :/ she's very twitchy not long after falling asleep as well. We haven't had a lot of information from the health professionals tbh

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[Bwlgirl33]

I will certainly mention to the Neuro.i didn't know any of that :/ she's very twitchy not long after falling asleep as well. We haven't had a lot of information from the health professionals tbh

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She's always tired so hard to tell.i have parents evening tonight so be interesting to hear what they have to say.i know she struggles with phonics and needs lots of encouragement to participate

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[Nakamova]

One other thing -- her preference for cold baths could be an indication of a sensory processing disorder or something called "tactile defensiveness". Does she also only wear certain clothes? Does she prefer looser clothing? Any chance her resistance to going to bed related to her pajamas or bedclothes?

 

[Nakamova]

Definitely write down any symptom or behavior issue and let her doctors know, even if you're not sure whether it's relevant. It might be nothing important, or a behavior that she will grow out of, but it might be connected to health issues of one sort or another.

 

[Bwlgirl33]

One other thing -- her preference for cold baths could be an indication of a sensory processing disorder or something called "tactile defensiveness". Does she also only wear certain clothes? Does she prefer looser clothing? Any chance her resistance to going to bed related to her pajamas or bedclothes?

She does only wear certain clothes and I had to buy her boys football trainers as school shoes she was adamant not to wear anything else. She changes clothes numerous times a day mostly her 6 year old brothers shorts and t shirts.she never wears pyjamas to bed and still wears a nappy as she still doesn't wake up to go pee

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[Bwlgirl33]

Definitely write down any symptom or behavior issue and let her doctors know, even if you're not sure whether it's relevant. It might be nothing important, or a behavior that she will grow out of, but it might be connected to health issues of one sort or another.

I definitely will do that ..the school made a report about all the unusual things going on including her attention span and sent it to the peadiatricion. She fobbed it off as nothing to do with her epilepsy. Must be something else was her reply. Very strange ?

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[Nakamova]

While there's certainly a chance her symptoms and behaviors are related to other issues (like the sensory processing disorder or sleep issues), the connection can't be ruled out. The pediatrician may not be familiar with partial seizure symptoms, and for that reason is dismissive. It would be great if your daughter could see a pediatric neuro, but they may not be easy to arrange.

Below are some links about Sensory Processing Disorder and tactile defensiveness. Although it's not well-understood, there seems to be a connection to traumatic birth:

https://kidcompanions.com/tactile-sensitivity-what-it-is-and-the-common-signs/
https://www.sensory-processing-disorder.com/tactile-defensiveness.html
https://www.brainbalancecenters.com...ss-in-kids-with-sensory-processing-disorders/
https://www.livestrong.com/article/218389-how-to-help-sensory-sensitive-children/

 

[acshuman]

WELCOME TO CWE Bwlgirl33!

One thing you can't do is take an opinion of a teacher or any other non-expert not trained about dealing with E at her school! Most of the time the first thing they think about is calling an ambulance so they won't be held responsible for anything that could happen as a result of a seizure. For that teacher to say that 'she didn't think what happened had anything to do with Graci-May's E, she is assuming that opinion. You want to always be diligent in checking things out that may come up!
I know I am from the States, but I have talked to many parents about what they should do about things that happen with their kids in school. I had one couple whose son had seizures and his teacher wrote up a discipline report every time he has a seizure and she refused to stop, even though the boy's doctor contacted the school and the teacher personally! :!: He became so embarrassed by these reports that his parents had to take him out of that school and home-school him!
You will find that the members of CWE will always be there for you, if they can answer your questions or have advice that you can use to help Gracie-May!

acashuman :hugs:

 

[Bwlgirl33]

One thing you can't do is take an opinion of a teacher or any other non-expert not trained about dealing with E at her school! Most of the time the first thing they think about is calling an ambulance so they won't be held responsible for anything that could happen as a result of a seizure. For that teacher to say that 'she didn't think what happened had anything to do with Graci-May's E, she is assuming that opinion. You want to always be diligent in checking things out that may come up!
I know I am from the States, but I have talked to many parents about what they should do about things that happen with their kids in school. I had one couple whose son had seizures and his teacher wrote up a discipline report every time he has a seizure and she refused to stop, even though the boy's doctor contacted the school and the teacher personally! :!: He became so embarrassed by these reports that his parents had to take him out of that school and home-school him!
You will find that the members of CWE will always be there for you, if they can answer your questions or have advice that you can use to help Gracie-May!

acashuman :hugs:

Thank you for your reply I've been thinking the same thing about their opinion for a while now it's all rather confusing ...i don't think they actually listen to how it can affect her. Although parents evening tonight was a bit more successful in getting them to listen I think...shes having trouble with phonics and simple counting so I have been asked now to get flash cards to help her with the alphabet.they said some days she's moody and difficult and other days she's very much wanting to please the teacher....could it be adhd? I tried explaining it's different in girls and could exist alongside her e .like talking to a brick wall as they won't get the education psych in as her behaviour at school isn't bad enough lol

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