4 y.o. new seizures

[lomayos]

Hi...new to this forum. Has anyone had success with vitamin/mineral therapy? My son is now on keppra for new seizure activity and very hyperactive/angry/irritable. has anyone had success with this and how did you find the correct doses? i have been researching B6 and magnesium?? Our neurologist is hopeful this is a temporary epilepsy? Would love to hear success stories. This came completely out of nowhere. neurologically normal, developmentally normal, etc. We are scared to death since he is active and strong and only moves at one speed and almost impossible to keep him 'safe'

i am a nurse and now have a new found empathy for all my 'parents'

 

[Nakamova]

H lomayos, welcome to CWE!

Definitely give a vitamin B6 supplement a try (assuming there are no contraindications). It has helped at least some folks to mitigate the "Kepprage" side effect. It might be better to have your son take the B6 in the morning rather than at night, since for a small percentage of people it can affect sleep.

Has your son been tested for any nutritional deficiencies or metabolic issues? Does he have any food allergies or sensitivities? Those might indicate if a nutritional approach would be helpful, and what foods or nutrients to focus on. Magnesium can certainly play a neuroprotective role, but if your son doesn't have a magnesium deficiency, then supplementing might not help particularly.

You might be interested in following the thread at this link: http://www.coping-with-epilepsy.com/forums/f32/neurofeedback-rebeccas-story-2733/#post22918. In it, CWE member RobinN discussed how she opted for a non-AED treatment strategy for her daughter, one that included neurofeedback + nutritional changes.

Best,
Nakamova

 

[donnajane]

Hi, Welcome. Sorry I can't be much help on the vitamin/mineral therapy as we are yet to try any. I have a 13month old who is under the care of a Nureologist. They are not sure what is "happening" with him just that he disconnects. (Vagues out and goes to the side or forward), has strange arm spasms and a slight weakness on one side of his body. He also has Shudder Syndrome. EEG's all OK. Other Nureologists have seen his video's and they say it "looks like an epileptic event"
Its amazing how having a child with a "medical condition" such as this can change the way you look at a lot of things.
Good luck and please let us know how it goes.
Donnajane.

 

[lomayos]

thanks for your replies...so much to read and research. he hasn't had a seizure for a week on the keppra so i hate to give up on something that is working. hoping he calms down a bit, but he is also a young boy, so i never know what is him and what is the meds!

 

[donnajane]

I know exactly what you mean. I never know with my 13month old if its a strange behaviour or a version of event. Especially with thinks like his head to shoulder repeated spasms, losing control of his left arm and in then slides down the side of his head. Even his nureo isn't 100% sure what it is is but he thinks what ever it is its OK.
Hope he has another seizure free week.

 

[Andrew]

Pyridoxine Dependent Epilepsy, Dyslaxia & Asperger's Syndrome

Hi lomayos,

You may be interested in reading my story regarding Pyridoxine Dependent Epilepsy (Diagnosed in 1971): http://www.coping-with-epilepsy.com/forums/f23/40-years-vitamin-b6-11674/ (Tomorrow (20th February 2012) will be my 41st anniversary using prescribed vitamin B6 to treat my rare type of epilepsy).

"In patients with PDS, pyridoxine-deficiency is not present,
and it is important to point out the distinction
between pyridoxine-dependency and pyridoxine deficiency
to parents, therapists, teachers and others​

providing care to these patients."

http://memo.cgu.edu.tw/cgmj/3301/330101.pdf

"Pyridoxine-dependent seizure is a rare autosomal recessive disorder that usually presents with neonatal intractable seizures. This syndrome results from an inborn abnormality of the enzyme glutamic acid decarboxylase, which results in reduced pyridoxine-dependent synthesis of the inhibitory neurotransmitter gamma amino butyric acid. The full range of symptomatology is unknown; but can be associated with autism, breath holding and severe mental retardation, bilious vomiting, transient visual agnosia, severe articulatory apraxia, motor dyspraxia, microcephaly and intrauterine seizures. Parenteral pyridoxine injection test is a highly effective and reproducible test in confirming the diagnosis."

http://www.indianpediatrics.net/july2003/july-633-638.htm

I also have Dyslexia (Diagnosed in 2005) and Asperger's Syndrome (Diagnosed in 2011).

http://www.autism.org.uk/asperger

http://www.autism.org.uk/imported%20content/lazarus/approaches-therapies-and-interventions/diet-and-supplements/diet-and-vitamins-therapeutic-approaches.aspx (Page 2).

http://www.autism.com/pro_b6_studies.asp

**DO NOT ALTER ANY MEDICATION WITHOUT YOUR DOCTOR'S CONSENT**

Regards,

Andrew

 

[trust]

hi everybody
our baby has recently undergone a hemispherectomy. she has attained 95% seizure reduction. we are taking it slow with the physical therapies for the various milestones as we dont want to stress her much. if any of you can share any views about how to help
her kindly post your comments. May God give strength to all of you to face and win
always.
Thank you,
Ian.

 

[Nakamova]

Ian, I wish you and your daughter a speedy recovery from the surgery.

 

[trust]

thank u

Thank you very much. She is getting better. Thank you, Ian.

 

[donnajane]

Ian, wishing your daughter a strong recovery and glad the op reduced the seizures so much. We are still searching for answers for our 13month old.

Donnajane.

 

[trust]

hi Donnajane,
Thank you for ur concern. Dont worry your baby will be fine soon. Our baby
still has a few seizures every day but they are milder than what she had before the surgery. We are patiently waiting for them to stop with the help of medications. Some phases in life are tough but they pass on and good times are sure to dawn tomorrow for all of us.
May God bless you and your family,
Thank you,
Ian.

 

[JMusy]

Hi Lomayos. Our six year old son has taken keppra from the age of one for tonic clonic and absence seizures. We don't know how much the keppra affects his behavior due the young age he started it. It has done well to control his seizures with just a few breakthrough seizures. I'd be happy to share any of our experience with Keppra. Our neuro told us it is the cleanest (safest) drug and probably the one least likely to be a causitive factor in learning delays. Our neuro does not check blood levels or bloodwork for Keppra - just our experience. I hope the Keppra works well for you. -Jo

 

[lomayos]

Thank you for your response...we had some setbacks. after almost 3 weeks without a seizure on keppra he had a bad cluster, i had to give him diastat and he spent the night in the hospital for observation. again today, he started a cluster. i think its time to switch, we see the neurologist on thursday. there is too much to research - is it the generic vs. brand, the dose, the timing of the doses. i hate to be jumping around trying a bunch of different drugs or something that is hard on his liver or other organs, but just waiting for the next seizure is going to give me a panic attack. he always is in the middle of something and almost always takes a hard fall. its impossible to protect him all the time.