Need Advice for my 5yo Son

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Dragonia

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Hi everyone..I'm in need of some advice from experienced parents. My story so far.......

Approx 7 months ago my son (aged 4 1/2y at the time) experienced a tonic clonic seizure without warning and without a temperature at the time. Immediately after his temperature became raised. The hospital diagnosed a Febrile convulsion due to his temperature after the seizure and he had a cough and cold for the following week. Although he has had fevers of 102 without convulsions as a toddler.

on the 7th November 2012 without warning sitting at the dinner table he experienced another tonic clonic seizure. Temperature normal throughout. Rapid response and paramedics arrived and he had a generalised seizure in their presence, tachycardia and cyonosis (apologies for spelling). On arrival at resuss he had another generalized seizure. He was kept in over night and IV antibiotics were administered and blood tests and swabs taken for culture. We returned for the next two days for IV antibiotics but all tests and cultures returned clear and normal and he has been referred to the Epilepsy clinic.

He returned to school on the 19th November 2012 the teachers took the class into the ICT computer room. My son had another tonic clonic seizure and the school called the ambulance. Again no warning prior. The doctors have said that they believe he has Epilepsy but will need an MRI and EEG before medication can be given.

My son returned to school but since monday we have noticed some changes.

He is very tired/sensitive and moody much more than usual as if he's not sleeping although I know that he is sleeping 10 hours per night( i have not witnessed any disturbances). He is asking for food constantly saying he is hungry and is eating much more than usual approx every 2 hours.:ponder:

We're currently still waiting on an appointment with the Epilepsy Clinic as we speak.

TWO of my maternal cousins from different parents are diagnosed Epileptic. My Nephew has partial seizures and is on the autistic spectrum. My Neice has been diagnosed with a genetic condition called HHT that causes abnormal blood vessels and my older sister is currently undergoing genetic testing to see if she carries the gene.

I'm concerned that my son could be having partial seizures or absenses that we haven't witnessed and that could be the reason that for the past week he's always tired and hungry??????????

I'm a single parent with no family support and really could do with a listening ear and some advice. I feel like I'm going out of my mind with worry.

Sorry for the essay and thanks for taking the time to read XXXX
 
Hello Dragonia, I just wanted to say hi, even if I can't answer your questions as I'm only really learning about epilepsy myself at the moment.

What I do know is how difficult and worrying it is when one's child has seizures. My daughter had her first tonic-clonic at 11 and her experience was very much like your son's November 7 one, except she had an MRI on the spot (which was clear) and an EEG the following day, which showed that she has epilepsy.

I hope your appointment comes through quickly, as that will be the best place to get answers. We don't have the hunger thing that I've noticed but my daughter does get tired a lot and has gone from fairly happy go lucky to having mood swings and depression since her seizures return in the spring.

Maybe you could ask his teachers to look out for your son "zoning out", which is the best way I can describe my daughter's absences.

I have learned since joining this site that keeping a seizure diary is very important, so you might want to do that for your son. Please feel free to ask me anything and, as I said, I hope your son's appointment comes through ASAP x
 
I'm keeping a diary of everything that happens including his behaviour. He's normally such a happy smiling boy and everyone has noticed just how much he has changed in the past two weeks. It's horrible feeling so helpless and with him not having any definate answers yet or on any medication it's such a worry. I've spent the week back and forth with the school liasing about his health care and he now has to wear a alert bracelet whenever he's not with me which right now is only at school.
I hope the appointment won't take too long but so far we've not heard anything.
Going to speak to his teacher again today and explain what an 'absense' is and see if there are any.
He was sitting on the sofa last night (tv on in the room) and he looked like he was staring into space. My daughter called his name but he didn't respond for 10 secs or so..I thought maybe that was a partial or absense but wasn't sure. I've noted it in the diary anyway.
Could really do with the EEG sooner rather than later I'm really not sleeping well.

Is your daughter on meds? What was the EEG like for her? I'm worried how my son will cope with having it.
 
Hello again. My daughter has been taking lamotrigine/Lamictal for a few months now, after her seizures re-occurred after break of about 4 years. She hasn't had any seizure activity for a little while but I have written elsewhere about my concerns about it affecting her concentration and therefore her schoolwork.

I wasn't present when she had her EEG as she was an in-patient in hospital at the time but she didn't report having any problems. My son also had one when he was six and seemed fine with it.

If you feel you are waiting too long for a clinic appointment - nag. Docs etc don't seem to understand how urgently you want to be seen when your child is experiencing something like this. IMO there is no harm at all in rattling their cage a bit and refusing to let them forget about you.
 
I'm concerned that my son could be having partial seizures or absenses that we haven't witnessed and that could be the reason that for the past week he's always tired and hungry??????????

Does your son have thirst issues along with hunger and tiring easily? Did they check him out to make sure he doesn't have diabetes symptoms also? Is he losing weight? Being tired, hungry and thirsty are common symptoms of diabetes, as can seizures if not treated properly.
http://www.ehow.com/about_5080096_diabetes-warning-signs-children.html
 
I definitely second Cint's suggestion. Extreme thirst and appetite are classic diabetes symptoms. Another symptom is having a juicy fruit smell to their skin or breath.

I did want to suggest, however, that around this same age, my son's appetite suddenly went nuts. (He does not have epilepsy, BTW.) Everyone tells me this is typical for boys when they reach a certain age, due to growth and activity level and such. So the appetite may not be cause for alarm. My son eats huge portions, and is always hungry again after an hour or two. It seems like he is constantly eating! =P

He could be having partial seizures at night, which would explain why you haven't woken up to them. I have partial seizures at night, and I always wake up exhausted and have low energy all day. And when I'm like that, I get cranky. So it could be that. Even if he seems like he's getting that much sleep, he may not be getting good and restful sleep.

Have doctors considered a hormone imbalance? Just a passing thought.
 
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Another thing--if he has any EEGs that come back normal, that isn't always an indication that he does not have epilepsy. I have had 4 EEGs, and only the third one has come back abnormal (I had a seizure during this one). I hope you find the right answers for your son!
 
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