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Old 08-08-2008, 04:19 AM   #1
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emmaelson HB User
hello im after a bit of help please

hi there im new here and im after a bit of advice please,
i have a 2 year old daughter who contracted herpes encephalitis at birth and she was very poorly when she was a couple of days old.
She managed to pull through and when she was 6 months old she started having seizures, when they tested her they found that she had right temporal lobe atrophy, we were told that a large amount of her brain had been damaged and there was a cyst on the scar tissue that was causing her fits, she was given carbemazepine to help to stop the fits as she was having 5-6 a day. The carbemzepine has helped a lot as she has only had 2 fits since she has been on it, but they have been realy severe ones with the first one she had to be taken to intensive care and put on a ventilator and the fit lasted 45 minutes, the last one she had lasted around 15 minutes, but wasnt as bad as she managed to get herself out of this one without needing extra help.
She is now 2 and her last two fits were around the same time of the year she had her worst fit in july 07 and then her last one was july 08, is this something that i should expect evry year? will it become a pattern?
I would also just like a bit of advice from someone who suffers from fitting as i feel i need to understand a bit more about how she feels.
She sees her consultant evry 4 months but i am worred that she is not getting the right sort of help, i keep asking for another scan so they can see how the cyst is and to see if her fits have caused any more damage, but i have just been told that they wont do any more tests unless she has more problem. i have also been advised that she should be under a neurologist, but she isnt.
I also get up evry 2 hours through the night to go and check on her because i have a real fear that she might fit through out the night and to be honest i feel scared of her situation i know no one likes to see their child in pain but i need to know if there is anything more that i can do for her?
Also id like to know how it feels around the time of a fit?
Im sorry for all of the questions i just need to feel like i am doing evrything i can to help her, and evrything that i can do for her.
any advice much appreciated.
thankyou, emma x

 
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Old 08-08-2008, 05:12 AM   #2
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lionsnake HB User
Re: hello im after a bit of help please

Hi Emma,just read your thread and I really feel for you.It really hurts me to hear of kids going through these sort of problems.I've suffered from epilepsy for the last 45 years,since I was 9 years old,been on numerous medications,seen many different doctors and had lots of different reactions to the medications.I suggest you search out a good neurologist.Someone who actually listens to you when you tell him/her of your concerns.Nine out of ten neuros I've experienced don't seem to be very human at all so it may take a bit of effort to find the right one.Keep looking until you do.It's worth the effort.When someone goes through a seizure, they are totally unaware of what's going on and in fact its a whole lot worse for the parent/onlooker as it is occurring because of how frightening the whole thing looks. Once they come out of it a number of different feelings may occur depending on the experience and the sufferer.Some may feel as though they've been hit by a fast moving train,others feel as though every muscle has been pulled to shreds,others have a total feeling of despair and depression and others really don't feel much at all and can bounce back fairly readily.Whatever the feeling,it always feels good to have someone support you, acknowledge you and care for you in any of these outcomes.You must be strong so that your child can grow up and be strong to look after him/herself in the future.It might help you to search out an epilepsy support group in your area to give you the emotional support you may need to make things a little easier for you.And most of all,never give up. Once you're on the right track things can only improve,no matter how bleak or lost you may now feel.Stay positive and stay strong.My love to you.

 
Old 08-08-2008, 11:15 AM   #3
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Join Date: May 2006
Posts: 733
SentenceDoing HB User
Re: hello im after a bit of help please

Quote:
Originally Posted by lionsnake View Post
Nine out of ten neuros I've experienced don't seem to be very human at all
This sounds so awful, but it's true!! Neurologists are all very strange, I find. Kind of like robots.

Anyway, Emma, yes, she should definitely be seeing a neurologist, and you should find out about putting her on anti-sezure meds to prevent any future seizures.

Good luck!

 
Old 08-08-2008, 01:40 PM   #4
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Join Date: Aug 2008
Location: Saint Louis, MO, United States
Posts: 14
RunnersDad HB User
Re: hello im after a bit of help please

Emma-

I am so sorry to hear about your situation and I can truly empathize with you. My son, whom is about to turn 3, began having seizures at 8 months old. Initially they were not too bad but by his 1st birthday he was in the midst of what would be a roughly 6 month hospital stay with only a couple weeks in there that he spent at home.
He had multiple episodes of Status Epilepticus with some of his longer episodes lasting upwards of 10-15 hours......and it took enough medication to knock out a horse to sedate him enough to stop the seizing. The end result was a long stint watching him lay motionless in bed under a medically induced coma. He suffered irreverseable brain damage unilaterally throughout the brain but we are hopeful that at his age the brain will compensate for the damage.
He was recently diagnosed as having a Pryidoxal Deficient Seizure disorder which is a rare genetic disorder where upon the bodies defieciency of Vitamin B-6 produces horrible seizures. Through the use of Medication and alternative treatments we have him down to 3 seizures a day.
Long story short.....you are your childs biggest advocate. If you feel that your child is not receiving adequate treatment it is up to you to speak up and get things accomplished. If the MRI or anything else you want done is covered under insurance than they really have no right to tell you it is not necessary.
It sounds like you have a good head on your shoulders in dealing with all of this. Ultimately, if you are not happy with your neurologist, or you simply feel that they are not capable of handling your childs situation...find a neurologist that you can trust. When my son's disorder outgrew one local hospitals neuro staff....we took him to St. Louis Children's Hospital(6th best Ped. Neuro program in the country and they are in our backyard) and we have been more than pleased, as they ultimately saved his life!
Sorry to be long winded....but i just wanted to let you know that you are not alone. Be strong and stand up for what you feel is right and that will get you a long way with the doctors. If you project confidence when you talk to them, in my experience they will be much more responsive to your needs and wants. Good Luck!!!

Mike

 
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