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Kiwi Mum
New Member


Date Joined Sep 2005
Total Posts : 7
   Posted 9/5/2005 2:19 AM (GMT -7)   
sad  Kia ora,
My name is Jo and my husband and I have three beautiful children, two boys aged 3½, 1½, and a new 5 week old baby girl.   I found your site after searching for some information and support on children and epilepsy.  Our 3½ year old son has just been diagnosed with epilepsy and seems to be moving from complex partial seizures to generalized despite being on epilim for 7 weeks.  My husband and I are going through all the feelings that I am sure you out there understand, but mostly I am afraid and would love to hear from others with similar experiences with children.  Help...
Jo. 

kayakmom
Veteran Member


Date Joined Jul 2003
Total Posts : 585
   Posted 9/5/2005 10:10 AM (GMT -7)   
HI and welcome Jo! I am so sorry your little boy is going through this! Try not to be discouraged about the medicine just yet. It can take awhile to see what dose might work for him or if he needs additional medication. My son also has simple and complex partials, sometimes generalizing.
 
It is difficult to see medications NOT work immediately, I know! Hang in there. It usually takes at least 4-6 weeks just to see if side effects can be tolerated and if there is any control. The doctor may ask for blood work to see what the level of  medication is in his blood. Because different people can metabolize at there own rate, he might do better at a higher dose.
 
DO you call the neuro when he has seizures? Our first neuro had me do this early on. Then he would adjust meds accordingly.
 
I also found that keeping a journal of seizures helped see if there was any pattern to them. Like certain things that might trigger them and we could try to avoid these.....(ie too little sleep, stress, missing a meal, flashing lights, illness etc)...........
 
 
Hang in there. YOu have found some support and info here. I have a son who has had seizures since he was very young, is now on Zonegran for his partial epilepsy. My daughter also had seizures for a time. Both of them are teens.
 
hugs, GInny

Kiwi Mum
New Member


Date Joined Sep 2005
Total Posts : 7
   Posted 9/6/2005 12:57 AM (GMT -7)   
Thanks for the replies, I feel better already knowing that others have experience of this.  We live in New Zealand actually, but the NZ Epilepsy Association forum seems out of use and I was desparate for support and information so had a look on the net.  Yes, our pediatrician has adjusted the Epilim dosage after each seizure, increasing 1ml each time.  At the moment our son is taking 200mg twice per day, and this week so far so good.  The side effects that I have noticed mostly seem to be behavioural, although this is pretty hard to measure really, and he seems a bit rounder around his beautiful face, which is a bit heart-breaking for me as I feel like we are pumping him with such a strong drug.  I have been keeping a journal, our pediatrician also suggested this and caught his last seizure on our digital camera video clip to show the doctor.  I met with the pediatrician last night and he has also recommended that I learn how to administer valium to stop the seizures as the last 2 occured on the same day, lasted for almost 14 minutes, and it appeared to be more Generalized (confirmed by the pediatrician also). 
Anyway, thanks so much Ginny, MandiAnn and Jennifer for your support, and I look forward to hearing from anyone else with advice and any pearls of wisdom.

Yentadog
Regular Member


Date Joined Aug 2004
Total Posts : 52
   Posted 9/7/2005 7:55 PM (GMT -7)   
Jo,
I am sorry that your little boy is having problems. I know how frightening it can be. My daughter was born with a multitude of medical issues... I always thought that her seizures were the least of her problems....that is until she had a generalized seizure...that lasted for longer than 30 minutes and required emergency medical intervention. After that seizure we were taught how to administer "diastat" which is a valium suppository (sp?)...Thankfully we have not had to use it yet, but having it on hand and knowing that we would be able to help her in the event of another prolonged seizure is a great relief. I must add that we were instructed that in the event that we would have to administer the Diastat, we would still need to call for emergency assistance, as it might interfere with her respiratory drive.
I wish you and your family the best of luck,
Nancy
p.s.
My daughter is 16...but since this last seizure, I now sleep with a baby monitor on, so that I can hear what is going on in her room.

Daisy9980
Veteran Member


Date Joined Sep 2004
Total Posts : 775
   Posted 9/7/2005 10:02 PM (GMT -7)   
I think that is a wonderful idea to keep the baby monitor. That probably will help you out alot.
Jo~ Welcome to healing well. I am glad you were able to find us for support. I am glad to hear about you not having the need to administer the valium. Take care talk to you soon Tracy
 


Kiwi Mum
New Member


Date Joined Sep 2005
Total Posts : 7
   Posted 9/27/2005 3:21 AM (GMT -7)   
Thanks for all the helpful advice and support.  I am not too worried about giving my son the valium, but am glad that we are now just over 4 weeks seizure free.  Pediatrician has increased the Epilim to 200mg x 2 daily.  Will post a new thread about this dosage as the Epilepsy NZ Association contact person suggested this was high for a child.
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