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Mom88
New Member


Date Joined Jan 2008
Total Posts : 2
   Posted 1/28/2008 9:22 AM (GMT -7)   
I need some advice pleeeease.

My son is 6 years old and has an abnormal brain development. As a result he has seizures. He's been on different meds and is on Dilantin and Clobazam at the moment but he continues to seizure up to 20 times a day. They are seconds long but lately he has had bigger ones (a couple of minutes) and more intense.
I'm at my wits end so if anyone has any suggestions on what to do - anything, please let me know.
I'm in contact with his neurologist all the time but he's not saying much.

Please help

djdaz_1985
Veteran Member


Date Joined Jan 2006
Total Posts : 2408
   Posted 1/28/2008 5:09 PM (GMT -7)   

Hi there and Welcome to HealingWell!

I am really sorry to hear about your son. It cant be easy when he has seziures and the fact that he has 20+ per day must be even worse. My immediate thought on what to do is to change his meds. If he is having 20+ seizures per day, then the meds probably are not covering him very well. I take Carbamazepine (Tegretol) which I think works wonderfully. Other people on here take Lamotrigine (Lamictal), Epilim, Phenobarbital and Keppra to name a few. Has your son tried any of these? If you find that one med is not enough, you can bolt 2 (or sometimes 3) together so that you get a combined effect.

My other thought turns to the neurologist... Have you tried telling him your concerns over his lack of communication? If he really is not very good at communicating, then perhaps changing the neurologist is something to consider. Changing to someone who is going to listen and talk is just as important as getting the megs right (In my opinion). If you are in the US, you can be referred to see an epileptologist rather than a neurologist. (Im guessing he needs to see a neurologist anyway though?) However epileptologists do not exist here in the UK (and I believe the same is true for mainland Europe).

I hope I have been of some help to you. Please keep talking to us.

Darren


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Another Day
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Date Joined Mar 2007
Total Posts : 1055
   Posted 1/28/2008 10:18 PM (GMT -7)   
I agree with Darren, if this neurologist can't come up with some better answers, I would start looking for another doctor.  Do you live near a teaching hospital by any chance?  I live in the U.S. and my doctor is at Vanderbilt University Hospital.  You can usually get the best of care at teaching hospitals.  That's just a thought.  You say his seizures are short, what type of seizures have they told you he has?
 
Hugs and Prayers,
 
Carla

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Epilepsy, asthma, GERD, depression, hypothyroidism, tinnitus


Mom88
New Member


Date Joined Jan 2008
Total Posts : 2
   Posted 1/29/2008 8:25 AM (GMT -7)   
I'm in Ontario Canada and we're seen at the best teaching hospital we have in Canada - Sick Kids.
It's so frustrating cause I feel they're not doing much but maybe I need to be more patient.
He is having all kinds of seizures - tonic clonic, myoclonic, and I think noe grand mals.
He has been on Valproic acid, keppra, and now is on clobazam and dilantin.

Has anyone tried acupuncture before?
I'm looking for any kind of alternatives since the meds aren't working.

Another Day
Veteran Member


Date Joined Mar 2007
Total Posts : 1055
   Posted 1/29/2008 9:17 PM (GMT -7)   
Mom88,
 
I have not tried acupuncture or any of the other alternative methods.  I can understand how you would be to the point of trying something else though.  Please keep us posted and we will keep you all in our prayers.
 
Hugs and Prayers,
 
Carla

Moderator, Allergies/Asthma
 
Help support the forums so we can support you:  http://www.healingwell.com/donate
 
 
Epilepsy, asthma, GERD, depression, hypothyroidism, tinnitus


streetpoet
New Member


Date Joined Oct 2007
Total Posts : 4
   Posted 7/6/2008 1:49 AM (GMT -7)   
I am responding to the women whose child has seizures 20 times a day.I don't know who your sons neurologist is but it sounds like you need another one. You should, if you already haven't, talk to John Hopkins Hospital in Baltimore.
They will help you find someone. John Hopkins is very progressive and one of the leaders in research for both Alzheimer's and Epilepsy.
I found a doctor in Los Angeles, which is where I live, that is really perfect for me but there are many out there who work specifically with children. The first step is research the doctors and find someone who is interested in figuring out what is happening with your son.
I wish you the best, I imagine its very scary but please keep us posted.
Best

streetpoet
New Member


Date Joined Oct 2007
Total Posts : 4
   Posted 7/6/2008 1:53 AM (GMT -7)   
Also have you researched this diet, evidentially it worked on kids very well. Here is a link about the diet:
http://www.webmd.com/epilepsy/ketogenic-diet-for-epilepsy
Good luck
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