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Epilepsy??? Rss

Hi Guys, Here i am again. Yes It's Ryan again. He's going back to where he came from (not the way he came though)!. Well on top of the ear infections he has been having these fit type things where he goes sort unconsious and not breathing. Which has been pretty scary. After three of these i was going out of my mind, so i took him to a medical centre (as it was a sunday) After explaining what was happening and his history of Phemonia and ear infections she checked him over only to tell me that it was obviously behavioural, breath holding. I told her i did not feel comfortable with this diagnosis as he is only 14months old. She told me if i did not want it to happen again i should let him have his own way. I explained that i was not about to raise a brat, to which she responed with i should then do a St John Ambulance course so i can revive him. With that i was not happy and went home intending to see his Paed on the Monday. But he had another attack that night and in despiration went to emergency. Where even though he had another attack in the presence of a doctor, were told it was behavioural, but he would be kept in for obsivation over night. The following day after seeing many doctors we were sent home with a referal for an EEG (brain scan) in two weeks time. Just a to double check it was not something else. The next day (monday) we visited the Paed, who agreed he did not feel it was behavioural. He is a good natured & happy kid he said. He also diagnosed another perferated ear drum (which i knew before we left home, he has had so many of them now) So we left with some iron supplyments, as apparently iron deficency can also cause his symptons. It was something we could do while waiting for the EEG. Two weeks later we had the EEG. We were told that his EEG was normal by the operator doing the test and told to make an appiontment with the Paed in about a week to get the results. By this time i was starting to doubt it myself. But two days later he had another fit, this time in front of about 40 people at his christening. Everyone that was present, though frecked out agreed they did not feel it was behavioural. so the following day i made another appiontment with the paed. On arriving at the appointment i was told that the head of neurology at westmead childrens hospital had phoned to say that his EEG was not normal after all. They said they could not determined what type of fits he was having but was having some. They said the EEG results were wishy-washy. They have started him on Tegretol, as they are asuming it is epilepsy. Which was a great shock.We are to have another EEG in two months time as they need a decent gap between them so they can compare the two. Finally i felt some sort of relief, though not happy about the situation would prefer it to a brain tumour any day of the week. I was wondering if anyone else has a child with epilepsy. I would be very interested to know about the side effects of the medication they are on, and what medication they are on, have they improved and when was their last seizure. Just remember mums and dads go with your intuition. and never go to a mediacal centre unless it is really nessesary. I am wondering if i should write a letter to the doctor from the medical centre, as not only did she not pick up my sons middle ear infection (that ruplured the next day) but i could have listened to her advice and not taken it further and where would we be now?. I think she needs to learn from her mistake before a poor innocent child does. I am also wondering if doctors actually look into the ears when they examin them. All the doctors at the hospital and the doctor at the medical centre all failed to see the ear infection.
We hear of children holding their breaths in tantrums, but to have to worry about your child being unconcious & not breathing and have doctors tell you its nothing medical must be a huge worry, at least someone at the hospital thought to refer you for the EEG to rule out any possibilities
I have a cousin who's son was diagnosed with epilepsy, when he was not much over a year old also, I dont know the details of his condition but he would pass out and appear to not be breathing too, there was no family history of epilepsy either. It first occurred while they were in the car & he tried to get the window down for what they know now was to get air (being a toddler in his carseat he couldnt do it) they found he tried to get to fresh air each time he was bout to have a "spell". He also had several fits before being diagnosed.
Their doctors eventually told them he had "Childhood Epilepsy" & put him on medication and its worked, he's now 10(?) and lives life like any other boy his age & hasnt been affected by it since he went on medication as a toddler - I recently was talking about him with my mother & she thinks she was told he is no longer on medication.
If it is epilepsy your son has, hopefully it is one where he will grow out of also - I also agree with you on the medical centres it is hard to find a good one & you always end up back at your own doctors when they open to receive another opinion which is usually quite different.

Arna & Paije (29/09/04)

Hi Tracey,

So glad you didn't listen to that dr! Some of them are unreal! Unfortunately though with epilepsy, unless it's a big classic type seizure most dr's won't know what it is. I really think you should write to her or complain, the rest of the world is held accountable for their mistakes at work & dr's should be even more so since they deal with such big issues... Truly unbelievable though - what, let your child stop breathing & pass out but OH IT'S OK, I CAN REVIVE YOU AGAIN??!

Anyway with the epilepsy, most of the women in my family have it - me, my maternal aunty, both of her daughters & my sister. Everyone except my mum & luckily my daughter (yet they tell us it's not genetic??). With all of us we had it from birth, with the classic 'tonic-clonic' seizures & we all grew out of it by the time we were around 2 - 3 yrs old. Mine came back again when I was 12 due to puberty but so far I'm the only one that it happened to (my sister's only 10 & my cousin's 7, so we're still waiting to see what happens with them). When it started again, it was only a partial seizure & quite weird... I won't bore you with the details but it was manageable & didn't interfere with my life in any way. I'm 25 now, no longer on medication & haven't had a fit in 2 or 3 yrs.

I was on Tegretol for around 6yrs & found that I didn't get any side effects, it's meant to be the least harmful anti-convulsant medication (did that make sense?). It's really not that strong. I'm trying to remember what the insert said were possible side-effects but I can't, sorry. Obviously your dr & pharmacist would be able to help you with that though.

That's just my story, I'm no expert by any means.. There are so many forms of it it's hard to say what this diagnosis means for your son but the majority of people who have it live normal, healthy lives with or without medication.

You can go to this website for more info: http://www.epilepsy.org.au/

Hope this has helped in some way!
Melanie ;o)

Thanks a lot for your reply.It's good to hear a good story about the medication working and him being able to be a normal healthy child. I just worry because i have only heard negative stories about epilepsy and the medications, and i know how cruel kids can be. He is the most beautiful natured little boy i would hate that to be taken away by teasing. I think i am handling the whole diagnosis well, But i know the first time he comes home from school crying because some kid has been teasing him, that will just break my heart. I hope to get some good news when we have the next EEG and finaly find out for sure if it is epilepsy and if so what type of it he has. Hopefully it will be the one he will out grow like your cousins son. Thanks again for your reply. Regards Tracey................
Hey Melanie, Thanks for your story it makes me feel better. I am glad that there are positive stories as you only hear the bad stuff, then can't sleep at night. Thanks again, much appreciated. Tracey....
How's your little man doing now? Our 15 mth old has Infantile Spasms, one of the most severe forms of epilepsy. He's on Vigabatrin and it is absolutely brilliant for him. I think it's only used for IS though, because it can damage peripheral vision when used long term. It was our last chance other than steroids, and we really didn't want to go there. I'd love to chat anyway.
Hi Tracey,

If I was you, I would not just complain to the doctor you first saw, I would write a letter to the AMA (Australian Medical Association)? What they said to you was disgusting, I'm glad you followed your gut instinct. It is this type of doctor we don't need and hopefully if you (and others) speak up, they will be made accountable for their attrocious practices. Having dealt with quite a number of doctors in my life, I know there are some I wouldn't trust to put a bandaid on a cut and others who I would happily put my life in their hands.
For all the other parents who may see that doctor in the future, I would urge you to make them realise that they need to look at the cases individually, not just guess its a tantrum or something else minor.

Sydney, BJ born 28.01.05 CJ born 17.08.06

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