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JME
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An_253118 posted:
16 yr. old diagnosed with JME. no history. No daily symptoms. Cannot drive for 6 months owing to diagnosis.
Medicated now for life. How do we seek 2nd opinion with a view to getting off potentially harmful meds. ?
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dancer86442 responded:
Hello,

Welcome to our Home. Seek an Epileptologist (Seizure Specialist) or a Neuro who specializes in Epilepsy. Not all neuros Specialize in Epilepsy, so this is the First question you need to ask when calling for an appt. To find Drs in your area, you could use WebMD's DR locator. The link is posted in blue at the bottom of this page. Or visit http://www.epilepsytalk.com In the Menu on the Rite is an updated article of Drs recommended from others' w/ Epilepsy. Also, located in Menu is a Search Tool for previous articles. Type in Diets. For assistance w/ Appropriate Diets you will need to see a HomeopathicMD or Nutritionist.

All meds, even over-the-counter meds, have potential harmful side effects. But, it depends on an individuals own 'unique' system as to whether these side effects Will affect them. Side effects are what we Watch for, not what will Be! Blood tests every 6 mths to a yr should be done, to ensure the drugs are Not harming your Child. Plus, A Proper Nutritious Diet is recommended to alleviate & even eliminate most Side effects. A good Multi-vitamin is Essential. It has Also been proven that we lack Vitamin D as Epilepsy Patients. So, you may want to consider a daily Supplement of D3, too. Depending on the medication other Supplements may be needed. Such as Extra Calcium, Magnesium, etc. Ask your Pharmacist, if in doubt. Also, keep in mind that it takes the system 2-6 weeks to adjust to our medications. If seizures are still apparent after 6 weeks a med/dose change is needed. Or if side effects are Intolerable, affecting 'Quality of Life' then a med change is warranted.

Seizures do not discriminate. They can happen anytime, anywhere. They do not have to be on a daily basis. Some ppl can go days, weeks, even a yr, b4 another episode. But, that can change at anytime. If uncontrolled the seizures could develop into Everyday incidents or other seizure Types can Start.

Please read our Journal Info, located in Helpful Tips/See All. Keeping track of Seizure activity & all the Info included in Journals will be the Best Tool you have to help your child.

You can discuss 'alternatives' w/ a DR, but, unfortunately Most DRS do not believe in 'alternatives'. Brain Surgery or Medications seem to be all they Know. But, do your 'homework' about Alternatives. & Demand the treatment you Want. The newest Treatment that shows Promise is Medical Marijuana. I am not talking about the MJ that gets you High. Use your Search Tool 'Medical Marijuana & Epilepsy' to read the Latest articles. This 'alternative' is working for some & has no potential Harmful Side effects.

Keep us posted. Keep asking questions. Keep Learning. Teach all those who know your child Proper Seizure First Aide! And what signs to watch for! There are books on Amazon.com that can help you to learn more, too. Take note of Titles/authors & ask your Local Research Librarian about the availability of any books you are interested in.

Another consideration: Since JME is a Life Time Journey, consider getting a Seizure Response Dog. Check out http://www.nationalseizuredisordersfoundation.org/ for more Info.

Keep us Posted. Know we care. Hugs

Love Candi
 
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hula_dancer73 replied to dancer86442's response:
Hi I have a az response dog that Ihave had for only 1.5 yrs now.

SHe is 3 and her name is Fly. She is a Border Collie that I got from Hawi'i helping Paws. At fifrst I had to go to Maui to train with hwer , but It was a plane trip of 45 minutes every weekend. So they shipped her to me on O'ahu, and I could train with her every day. I have complex Partial szs and a Vagus Nerve Stimulator as well. Even though I can tell when one is comong on snhe leans in to my my left leg and puts her paw on my left foot.

I then swipe myself with my magnet and it either shortends it or wttops it, She will lay right on top of me ddurng the sz if I am on the grouond other wisr she stand there and barkd as I am tild.

My szs are iintractable so I had to have that VNS in or I would have died. I have already lost a 13 year old 4 years ago from JME

I still have a 17 yr old at hone wno alsos nas ep.
I live on O'ahu in West Honolulu-GO UH Warriors!


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