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New Here, Worried/Concerned...Please Help : (
Fri, 01/06/2006 - 09:53Topic: Parents & Caregivers
Hello all, I'm hoping someone can help me sort out my confusion and worries. My name is Anne, and my sweet, bright, handsome son (about to turn 9 this month) has had quite a strange year (in 2005).
He had 3 seizures in about 28 hours back on December 1st and 2nd. Two "focal", and one "tonic clonic" (the whole body one).
These took us by complete surprise - there is no history of epilepsy or seizures in our family.
He had no fever, nothing had changed in his life that we are aware of.
Okay, the reason I am concerned, is that I feel his health is declining, and I feel powerless, helpless, and totally confused.
History:
*Perfect health til 2005 -- rarely sick, ate really well, etc.
*Summer 2005 -- he developed hypertension, resolved after 3 months, we still don't know why (he is not even remotely overweight, very healthy eater).
*Fall 2005 -- he became frequently fatigued, irritable, tired all the time. Started looking paler than usual.
*December 1st and 2nd -- the seizures.
*EEG abnormal -- sharp wave pattern in temporal lobe region.
*CT scan -- clear
*MRI -- "normal", incidental finding of cyst on/in pineal gland
*Official Diagnosis = "Focal Seizures"
*Very, very thorough bloodwork reveals everything to be totally normal -- he did test positive for Mono -- not acute, so maybe that explains his fatigue???? But doctor said most people do test positive for Mono, so this is not entirely helpful.
Sleeping and eating haven't changed much, yet he is soooo tired all the time.
Could he be having seizures at night we are unaware of?
Would an overnight EEG be helpful?
I am sorry this is so long, I hope someone here can help me or give me some insight or guidance. I feel like my son's health is deteriorating and NO ONE has ANY anwers! : (
Thank you so much to anyone who can offer any advice...
Warm Regards,
Anne
Comments
Re: Re: Re: New Here, Worried/Concerned...Please Help : (
Submitted by Tommysmom on Tue, 2006-01-31 - 08:22
Thanks for the comments Michelle. I have heard of the ketogenic diet but have not researched it yet. I will look into it. Did you have to have your daughter wear a helmet for protection while she was learning to walk? What other medications is your daughter taking now? What is the VNS? We live in NY and Cleveland Clinic is not too far away. Did you have sucess there? We are seeing a neurologist at Childrens Hospital in Buffalo NY. I do like him and he seems to be aggressive in Tommys treatment.
Re: Re: New Here, Worried/Concerned...Please Help : (
Submitted by Michelle V on Tue, 2006-01-31 - 07:43
Hello Patti, My daughter also had "head bobs" when she was under 1 year. She was diagonosed with atonic seizures. She also had complex partial(grand mal). I documented everything as well as video so we could show her neurologist what we were seeing. At her worst she was having over 100 a day. It broke our heart, because of course she was tring to walk. We found that because her head was 1/3 the size of her body(as with all infants) the head bobs we sooo dangerous because of her proximy to the floor. We searched fro meds to help control. No luck. We started the ketogenic diet at 20 months and her atonic seizures went from 100's a day to under 10 the day we started the diet. The diet is not an easy road to go down but it was our miracle for 3 years. We learned to travel with cooler in hand, always we were one meal ahead of the game. Weighing every morsel of food that she ate and monitoring that she did not injest anything for others or the floor as children do was a constant challenge. However, her and our quality of life changed for the better immediatly. At her best on the diet she had one seizure in a 6 week period. We were of course looking for complete control and her neurologist still played the med ying yang game to find something that worked all the time. Unfortunatly, we never got back to the baseline of 1 seizure every six week and she out grew the diet. We took her off 3 mo ago at the age of 5 1/2. We are still searching and being our daughters advocate. Asking questions, researching anything and everything. We are now considering the VNS. Keep plugging Patti, ask questions, you must be comfortable with your neurologist. If you are not, travel and find one that will listen to you. Our daughter has one neurologist 1 hour away, one 4hours away and she has been seen by the Cleveland Clinic in OH. We live in FL. Keep trying and questioning.