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Post by hallisa1 on Sept 13, 2004 6:15:44 GMT
It has been several years since we were on this link. Our daughter, Jemma is 8 years old and has sub-cortical band heterotopia. Jemma has no other physical health challenges except for her seizure disorder, which seems to be getting more difficult to treat. She has tried 6 different medications, but none seem to be effective for long. The longest has been Topomax (1 1/2 years )with relatively few seizures. In the spring, Jemma's seizures would last up to 30 minutes. More often, they last from 15-20 minutes. She tends to blink and brief periods of eyes wide open. Other than those moments, she can have a conversation with us or do an activity. Our question is- do other people have similar lengths of seizures, and if so, what treatment do you give? Our Neurologist is saying how dangerous it is to go that long, however we debate about the pro's and cons of being medicated on Valium (emergency med)as a result of treating her, or letting it pass on its own. She is generally fine after a seizure- can go to school or carry on with her activity. Occasionally she will need to sleep. Does anyone know exactly what the danger is with a simple complex seizure?
p.s. we have started supporting her meds using acupuncture and cranial sacral massage as an adjuct to her therapy. We don't know if it is working yet, but she loves it!
Searching, Lisa
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Post by Jon on Sept 15, 2004 6:18:59 GMT
Lisa
A few years ago I remember a doctor saying that you shouldn't feel you have to treat seizures at any cost.
I think the reasoning behind it was unless the seizures are Infantile Spasms (where the brain is likely to be further affected as a result of the seizure) or if the child is in danger of choking, stopping breathing or physically endangering themselves (eg falling) then the risks are probably low.
However, status epilepticus (continuous seizing) should be avoided as there is a much higher risk associated with long duration seizures. I would suggest having a google search (www.google.com) - you are likely to find answers there!
regards
Jon
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Post by claire04 on Oct 10, 2004 9:22:02 GMT
My daughter also has problems with seizures. We had a very bad patch where she had none stop Infatile spasms we was put into the infantile spasms trial we had to follw there instructions first trying predisalone and viabatra this didnt work at all her fits got worse. we the tryed injects of ATCH after 3 course this worked on her. Imogen also suffers with many other types of seizures and working along with her Consultant we have them under good control and she only fits bad now when constipated for unwell with a temperature .
Her current fits medication is carbemazeipine
clonazepam
lamotringene
these daily haelp keep her fits well controlled i hope this helps.
Imogens fits before they were contoleed used to last 30 mins plus if she has one of these we administer an old fasioned medication which not many use
prohalydyhyde mixed with olive oil. this is very effective and unlike diazipam its less likely to give secrections
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Post by hallisa1 on Oct 18, 2004 5:37:22 GMT
Thanks for the info ans sharing. We do have diastat and peraldehyde as a back up, but have not used them. We found out how difficult it is to try to give a rectal medication to a concious child. Still trying the Cranial Sacral massage and some Eastern diet suggestions before thinking of the Ketogenic Diet or Vagus Nerve stimulator. We welcome any other alternatives which have helped anyone. Lisa
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