My daughter was being seen by her pediatrician for 'possible' complex partial seizures, she's had a 20 min EEG back in January that I recently got the results from which showed 'abnormal brainwaves in the photosensitive part of the test', according to the pediatrician. I asked her if she was diagnosing epilepsy, she said no. I asked the pediatrician if that meant that she didn't have epilesy, given the family history (we now have 4 live generations with at least one person diagnosed, and we have found out that my nan's aunt was commited to an institution becase of the 'falling sickness'!). She then asked if Jade had any learning difficulties, which she does, and then she appeared to change her mind, and said that she would be sending Jade for a sleep deprived EEG (which I've not had, and provided no explanation...). On thursday, I witnessed Jade have 2 OBVIOUS myoclonic seizures. When Jade was ok, I asked her if she'd had them before. har explanation was " Yeah, that was nothing, I get them all the time and drop stuff, that's not as bad as the ones i get in bed that make all my body shake, and that's when I wet the bed". I should note that Jade was originally under the pediatrician to rule out causes for her bed wetting as she is 10 1/2, all other causes have been ruled out completely. She tends to wet the bed about 3 times a week, now I'm petrified that her seizures may be more along the lines of mine, I don't want her life to be like mine, I wanted so much more for her. No-one in our family has EVER gained enough control over their seizures to drive, and at present only one of the 5 ( two in my generation, one of my cousins recently diagnosed, she crashed her car during a CP) is working, and only part-time. Jade had a CP later on thursday afternoon, and it seemed like her seizures were 'ramping up' to a larger one like mine do. as this hadn't happened by bedtime, she slept in with me, and lo and behold, she had a nighttime tc. I've got her appointment for her sleep deprived EEG but its not at my local hospital, its at a hospital that I cant get to by public transport as it's too early ( i know, it has to be for a sleep deprived) that's like 40 miles away, and I have to keep her up all night...who's going to help ME when I start seizing??!! I have a lady from Epilepsy Action trying to sort this mess out for me, they've put her to this other hospital so my local one can keep meeting it's government targets, and their EEG dept. is VERY short staffed, but there is NO public transport that can get us to this other hospital this early, and if Jade doesn't go, they'll put her to the bottom of the list??!! sorry for rambling, but when it's my little girl, I get a bit....
Jade & new seizures
- Thread starter Loudmouth
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skillefer
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I'm sorry to hear about Jade's seizures. I'll be praying for her that all goes well at the sleep deprived EEG, that her doctor's are given the wisdom to diagnose and treat her correctly, and that you both have the strength that you need to make it through this.
morgan381
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Oh, LM...I'm so sorry to hear that Jade's seizures are worse than you knew. I hope the person with Epilepsy Action can get you better arrangements for the EEG. I'll keep you and Jade in my thoughts and prayers. Hopefully, the docs will be able to find an AED that works for her. Keep us posted...
(((Hugs)))
Morgan
(((Hugs)))
Morgan
morgan381
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:clap:glad you could get it done locally!...
you'll be able to get Jade in for the eeg before I can get in to see a new neuro--I called in June to make an appointment, but couldn't get one until the end of September. I get so frustrated with docs and hospitals! It's rediculous to have to wait that long for any kind of medical test/treatment!:soap:
I hope everything goes well.
you'll be able to get Jade in for the eeg before I can get in to see a new neuro--I called in June to make an appointment, but couldn't get one until the end of September. I get so frustrated with docs and hospitals! It's rediculous to have to wait that long for any kind of medical test/treatment!:soap:
I hope everything goes well.
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Loudmouth (sorry I dont know your name )
Is there anyone at all that could drive the two of you to the appt?
Or possibly, is there a hotel near the hospital that you could book a room at the night before and go stay there so you are close by in the morning.
Some hotels have a shuttle that might take you from the hotel to the hospital, or you could get a cab, or maybe even one within walking distance.
Just suggestions I thought you might check into.
I understand your frustration and complications to what is already a big problem, and hope you can find a solution in the mean time to set your mind at ease, as the last thing you need is the extra stress over worrying about you daughter and to boot how you are going to make this work out.
Hope all goes well, best wishes
JLynn
)Is there anyone at all that could drive the two of you to the appt?
Or possibly, is there a hotel near the hospital that you could book a room at the night before and go stay there so you are close by in the morning.
Some hotels have a shuttle that might take you from the hotel to the hospital, or you could get a cab, or maybe even one within walking distance.
Just suggestions I thought you might check into.
I understand your frustration and complications to what is already a big problem, and hope you can find a solution in the mean time to set your mind at ease, as the last thing you need is the extra stress over worrying about you daughter and to boot how you are going to make this work out.
Hope all goes well, best wishes
JLynn
It's been sorted for tomorrow (now today LOL) morning. Today in the supermarket, she had a seizure where she bit her tongue so badly (despite being upright, her jaw was clamped on her tongue) that she was bleeding everywhere. I cleaned her up, and when she 'came back', I asked her if her tongue was sore. She replied "why, should it be?" I can't believe she didn't even notice! Thankfully she has her sleep deprived EEG At 9am. Just trying to keep her awake at the moment!
Thank you, Cheryl. they took 1 1/2 hrs doing her sleep deprived EEG, she had 3 obvious myoclonic seizures while she was asleep (they said in a deep sleep?!), They said that I will get the full results when I see her pediatrician on 8th September, in between the pediatrician will decide what AED to put her on. We don't have a pediatric neuro in our area, closest is in GOSH in London, 40 mins bus my end, 1 1/2 hrs train,then 2 tubes, with a waiting list of round about 6 months for Jade's first appointment. I am a little worried about SE's from the meds, and also what they will give her as she has a bad heart as well, she needs surgery to replace the 2 leaky heart valves she has. Also there is the fact that she cant/ wont take tablets, so do they do liquid meds for kids? or dissolvable or something like that? Can't believe we both have to wait 2 weeks to talk to the pediatrician, and find out what meds. It would have been better to start them in the holidays, surely, not 1 week after she goes back to school?
Jaki. (like Jackie but no 'c' and no 'e', Blame my parents!)
Jaki. (like Jackie but no 'c' and no 'e', Blame my parents!)
RobinN
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I wish you the fortitude to know what is best for Jade. To have the strength to hold her up when necessary, and to believe your decisions when faced with those in white coats.
I am glad that they were able to capture something on the EEG. Hard to wait so long for results I am sure.
I am glad that they were able to capture something on the EEG. Hard to wait so long for results I am sure.
Thats seems an ureasonable wait for her to see the neurologist ecspecially considering she has other health problems.
Starting new meds is always a worry when they are at school. I have stressed to Jacinta's teacher and office staff to watch her for any side-effects, it's all you can do.
Hope you sort out her new meds and have her settled before her heart surgery.
Prayers for both of you
Cheryl.
Starting new meds is always a worry when they are at school. I have stressed to Jacinta's teacher and office staff to watch her for any side-effects, it's all you can do.
Hope you sort out her new meds and have her settled before her heart surgery.
Prayers for both of you
Cheryl.
Wow,
I don't know that I would be able to wait, and not lose my mind.....
Perhaps the doctor will call you sooner, rather than later, to get things moving faster? Now that you have concrete proof?? *SIGH*
Good luck..........
Meetz
:rock:
I don't know that I would be able to wait, and not lose my mind.....
Perhaps the doctor will call you sooner, rather than later, to get things moving faster? Now that you have concrete proof?? *SIGH*
Good luck..........
Meetz
:rock:
I think I AM beginning to lose my mind, as the school have a policy of never administering medication, despite the fact that it is a 1/2 hour bus journey each way for me, and it's driving me bonkers, I'm fighting the LEA on this one, as ambulance drivers can't administer emergency E meds, And it will take me 1/2 hour to get there, and with her heart probs, she will probably be on a 4* a day dose of Ethosuxamide, first thing, mid-morning, mid-afternoon and early evening. Add to that the fact that they won't give my son with Chronic Asthma either routine inhalers (he has to be able to do them himself, and can't due to his muscle/joint probs) OR emergency inhalers (he would DIE by the time I get there), It's all a bit mind-blowing at the moment. GOD, I hate England's stupid buerocracy, and not allowing for the fact that children with disabilities could possibly have a disabled parent themselves, of course, We can ALL drive, can't we? AND if one more person from the education authority asks me why I 'don't just learn to drive' AFTER I've told them I have intractable epilepsy, I might just SCREAM!!!!:soap:
I would be furiostoo!
That is some stupid rules ! I guess they would rather be responsible for a child's death or being critically ill ! You are right you guys have a dumb buearacy in that country and where you live that is stupidity. I could say more but I won't it wouldn't be nice.
David
That is some stupid rules ! I guess they would rather be responsible for a child's death or being critically ill ! You are right you guys have a dumb buearacy in that country and where you live that is stupidity. I could say more but I won't it wouldn't be nice.
David
Are they completely ignorant?
What a predicament! Cant a doctor demand and authorise the administration?
What on earth do they expect people to do!?
Thankfully we dont have a problem with meds being administered at our schools here either.
We have children with peanut allergies at our school and Epipens are on hand for the staff to use if a child goes into anaphylatic shock.
No wonder you are going to home school ..i dont blame you.
Thinking of you
Cheryl.
What a predicament! Cant a doctor demand and authorise the administration?
What on earth do they expect people to do!?
Thankfully we dont have a problem with meds being administered at our schools here either.
We have children with peanut allergies at our school and Epipens are on hand for the staff to use if a child goes into anaphylatic shock.
No wonder you are going to home school ..i dont blame you.
Thinking of you
Cheryl.