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Medical Forum / Diseases and Disorders / Epilepsy / April 2006Disappointing MD visit
To recap for new people and those who may not remember... My 14 year old has had epilepsy since age 8. We were referred to MCG epilepsy center and were in the Phase 1 eval for temporal lobe surgery. All of his past info has pointed to rt temporal lobe. The video EEG only captured 1 sz, and it was rt temp lobe. But there was a lot of interictal activity that was bilateral. So, yesterday, we found out that the PET scan showed a lesion in the left temporal lobe, and 80% of the interictal activity was left sided. So he is really not a candidate for the surgery. We are doubling his Keppra dose to see if he can tolerate it. (He had some tough SE in December when we tried going up) They are doing clinical trials of the Neuropace stimulator at MCG. It looks impressive, and Cody's doc has mentioned it as an option for him, but only after he is 18. Do any of you know if there is a similar age issue with the VNS? Maybe it has something to do with growth or else the fact that Neuropace is still in trials. I am going to call the clinic nurse and talk with her some more. Thanks for being here, and for understanding. I love my son, and would not give up the special parts of him just to get rid of the seizures. But, I just wish we could find something that works for him. Holly -- Holly F. Sox, RN, RAC-C Clinical Services Manager Robin Technologies holly@careplans.com www.careplans.com > To recap for new people and those who may not remember... My 14 year old has > had epilepsy since age 8. We were referred to MCG epilepsy center and were [quoted text clipped - 27 lines] > > holly@careplans.com www.careplans.com Hi. If you see any older posts by Howdy Dave on your reader (I didn't go check mine yet), he used to have a Website that had links wrt. the VNS, which he had (as an adult). He might not be able to tell you more wrt. a younger person, but when he's around each day or 2, he may have other links for you, or know more about what age it might work at. I wish there was a *pill for him, as the VNS (you probably know involves some surgery, and periodic (3 yrs.?) return to get its Battery replaced. It senses szr. onset and gives a small jolt to the Vagus Nerve that might* defib. some szr. types. *That's the limit of what *I know about it. Howdy Dave can probably give you most of the stuff he found while he was using his, and if his website still had information he assembled a few years ago about details, etc. (There *might also be a website or chat group he'd know about.) I was going to tell you where the T.Lobes are and how difficult it can be to get to them, if any kind of surgery were considered as a 'cure', but I see as an RN, you'd already know that. My Right T.Lobe szrs. were able to be controlled with Tegretol and another pill, but *that one is usually only used in an Adult because of risk of Calcium loss in bones or teeth, moreso in children? than some adults. Did they ever try Dilantin or some of the older Anti Ep pills with him? (I *think that pill is so olde that it should have studies showing if it can be used with 'kids' but also with his type of szrs. ) *I was put on Dilantin first for Rt. Temporal Lobe szrs. (my Neuro said) because of it being so old and studied and *if it worked, it was cheaper than many of the newer pills more targetted to a particular brain area. As it turned out it gave *me too erratic control, and that's when we moved over to Tegretol Controlled, and later with a 2nd pill. *I took about 4 years to get full control from onset, and I'm *Olde* !! I have no idea how hard (but can Imagine) it might be to get control in someone so Young, whose systems and organs are still growing. Since their DIgestion, Heart rates, etc. are constantly changing as they mature? that must have some type of effect on the rate some of the anti ep pills get flushed out of their bloodstream. I hope someone around here can give you some ideas or support links to try. (If you don't see one of those Older posts by Howdy, repost and I'll put up a Website post I usually put here each ~2 weeks or so, that I think has his Website Address and still has information he gathered specific to living with the VNS and more detail for you.) G./ (I'm also having some trouble with my Server or network, so if you reply I might not see the message right away. They seem to get through within an hour or 2 anyway. ) INTERRICTAL? -- It's not even in the dictionary. Will you please explain these terms as you use them, at least for the newbies.  Signature=========================================== Paul J. Chiasson http://www3.ns.sympatico.ca/paul.chiasson/ paul.chiasson@ns.sympatico.ca vsmon@ns.sympatico.ca ai714@chebucto.ns.ca ========================================== > To recap for new people and those who may not remember... My 14 > year old has [quoted text clipped - 45 lines] > > holly@careplans.com www.careplans.com > INTERRICTAL? -- It's not even in the dictionary. Will you please > explain these terms as you use them, at least for the newbies. Sure it is! http://www.google.com/ For any word, not for just the current question, use Google and type into it (the) word dictionary as follows for the current question, but you need to spell it correctly like Holly did. :) interictal dictionary in·ter·ic·tal (ntr-ktl) adj. Of or relating to an interval between convulsions or seizures. Notice above that my reply is cut off right after my quote of you. I didn't do that intentionally! There are 2 dashes in your post "--" that preceed your sig line that were placed there by your software and modern newsreaders like mine cut off the quoting at that point as mine did. They do that in a system premised upon bottom-posting and had you bottom-posted, all of the quoting that you intended to be there would still be there and only your sig lines would be absent where the next person would begin their reply. Just thought you might like to know. Holly, I am so sorry you found that he most likely is not a surgery candidate! I have heard some about Neuropace and Deep brain stimulators. It is worth researching for his future use. They have had more success with them for TOurettes and Parkinsons from all I read, but they have hope. There are some other new treatments in the pipeline, but may be years away. It is so hard to see your son going through so much. Just keep remembering that there are many amazing individuals who have been successful despite their epilepsy. Hang in there. You sound like a great advocate for his care! http://www.neuropace.com/trials/overview.html http://www.epilepsy.com/newsfeed/pr_1096032605.html Hang in there, Gin Thank you all so much. Paul, I apologize for using a technical term w/o definition. It's hard for me sometimes to gauge how much knowledge people have. Most of the subscribers on this group are quite educated about epilepsy, and I assumed it was a word they'd find familiar. G, I hadn't thought about Dilantin. I will ask the neuro about it when we see him next. Because we have been at this so long, and had been through some of the earlier drugs, including Tegretol, I though it sould probably not be an option they would choose. I do know that a lot of the SE from Dilantin are associated with cumulative use, and would be concerned about him starting it so young. Gin, after processing all week, your last point is where I am focusing right now. Not looking at what he may potentially "miss out on", but rather what he will surely accomplish. I have been reading a lot of Paul's writings in the Bible lately. There is a theory that the "thorn in his flesh" that he wrote of was epilepsy. Someone else on this ng told me months ago that when the focus of her seizures was removed, she lost her ability to appreciate music and beauty. She said it much better than that. But I know that Cody has some very unique spiritual and emotional characteristics that I wonder if they are related to his epilepsy. And I would SO not want to lose those parts of him. Again, I am so glad y'all are here. Holly I am educated, but I learned a long time ago that the doctorese was used when professionals tried to hide their ignorance, either of a lack of positive test results, or in dealing with people who only wanted to hear positive news. I've dealt enough with language and editing language to understand that scientific and medical terminology is fine and acceptable in professional journals, but not when dealing with the public, such as in doctor's offices. The technical terminology does very little about what Mom & Dad have to deal with when little Johnny or Suzy has a seizure in the night. I could start getting all technical about what I do with recipes, but it won't make anyone want to try them or get them hungry. My eggs are ready. Signature=========================================== Paul J. Chiasson http://www3.ns.sympatico.ca/paul.chiasson/ paul.chiasson@ns.sympatico.ca vsmon@ns.sympatico.ca ai714@chebucto.ns.ca ========================================== > Thank you all so much. > [quoted text clipped - 41 lines] > > Holly > I am educated, but I learned a long time ago that the doctorese > was used when professionals tried to hide their ignorance, either [quoted text clipped - 3 lines] > medical terminology is fine and acceptable in professional > journals, but not when dealing with the public, such as in *************************************************************************** > doctor's offices. The technical terminology does very little > about what Mom & Dad have to deal with when little Johnny or Suzy *********************************************************************** > has a seizure in the night. I could start getting all technical ********************************** > about what I do with recipes, but it won't make anyone want to > try them or get them hungry. [quoted text clipped - 7 lines] > ai714@chebucto.ns.ca > ========================================== Yeah, but..... I posted some sites a few days ago that show specific first aid depending which type of szr. someone is having. The symptoms they display are there and the 'doctoreze' as you call it. Surely you don't expect the rest of us who use terms that are generally accepted to describe a seizure type or a pill type to go back to using a Binary code to describe what it was called 20 years ago ? The most common seizure types, have a particular outward appearance, and a specific inward feeling as part of the Aura that someone has at onset in large percent of the cases. IF for example a child is diagnosed, and says he gets a very bad taste of Lemon when his start, that points to a particular type of seizure, and are of the brain where it could be starting from (Right Temporal Lobe). We could wander OFF and talk about what it's not, and how it's different, and waste a Pile of time, instead of pointing them at Complex Partial Seizures or Temporal Lobe seizures on sites that are available for them. Those and particular PILLS are targeted for particular seizure types. To the extent that someone New here can describe what they feel at onset, or what pills the Doctor has prescribed (if the Dr. hasn't given them a szr.name), we can at least Point them to what to Search on, and what First Aid from Julie's Idaho Website Chart is the one most likely to give successful outcome. If it's a term or definition you haven't seen or encountered then ask here (as you did) and we'll post what it is, especially if we were the one who used it. But I don't think we should have to discard specific words that describe a medical term or pharmaceutical medicine, like a SImple Partial seizure or Tegretol. People who don't recognize the latter, don't use it, so have no need to proceed down the thread. If they *have used it, then they might have experiences to share or want to read more about it, and will then stay on the thread. G./ > <> wrote in message > > Thank you all so much. > > Paul, I apologize for using a technical term w/o definition. ************************************************************************ > > It's hard > > for me sometimes to gauge how much knowledge people have. Most [quoted text clipped - 3 lines] > > assumed it was a word they'd find familiar. > > Holly Now that was a sensible reply; although, I will admit I have no idea what "partial" seizure means, to me they are all pretty much knock down drag out, Krakatoa busting events, awake (Well, half way conscious anyway), or asleep. I have no training in first aid, I lead a fairly sheltered life and it was a major family battle to let me go from New Waterford, in Cape Breton, to Dalhousie U. here in Halifax. And I was 25 at the time, with a BA in English and Theology (ie. Christology & Biblical Criticism) already under my belt from our local university college. I know a little bit about seizure types, but at local association seminars my attention tends to wander when discussion becomes too focussed. My body has become innured to side effects over the years from meds. Growing up some that I were on made me an almost insomniac, but now fiddling with the computer at 3am has its advantages, especially when I talk to people using MS Messenger before they have supper in New Zealand. I focus best on the minutiae of family intrigue under the Herodians or the Caesario/Claudians (circa 40 BCE - 70 CE). Terminology tends to scare people when they first encounter it, especially medical terms. The scientifically defined term for the bones that make up the fore arm, for example, would have me stumped, but you watch enough CSI shows, and you're bound to pick something up. I love watching properly credited documentaries on the brain and how it functions, but until I joined this group I thought that "ick" meant "OH YUK!!" and that "tal" was something I had to compress my neck into doing so I could look at it. Is there a SCRABBLE of MEDICAL TERMINOLOGY? =========================================== Paul J. Chiasson http://www3.ns.sympatico.ca/paul.chiasson/ paul.chiasson@ns.sympatico.ca vsmon@ns.sympatico.ca ai714@chebucto.ns.ca ========================================== > Yeah, but..... I posted some sites a few days ago that show > specific first aid depending which type of szr. someone is [quoted text clipped - 65 lines] >> > assumed it was a word they'd find familiar. >> > Holly > Now that was a sensible reply; although, I will admit I have no > idea what "partial" seizure means, to me they are all pretty much [quoted text clipped - 5 lines] > BA in English and Theology (ie. Christology & Biblical Criticism) > already under my belt from our local university college. *** I think the Partial type just involves a Partial section of the brain, and includes what people may describe as an Aura--> usually a Simple Partial for that type. With it you remain aware (mostly) and conscious, but might be disoriented while it happens. With Complex Partial, it can start that way (mine did), then spread to other areas of the brain in a complex manner-- so Complex Partial, often ending in loss of awareness or to full unconsciousness. I don't know if that's the basis for using that name for it, but seems close enough for me. The sensation (if you've never had it) is like Waves moving outward, often overwhelming all the senses and producing a 'drop attack' sort of ending. Grand Mal (French for Great Sickness, so it was probably called that in 1800s or before), has different effects but often ends in loss of consciousness too? I *think that type is also described either at U.S. Ep. Foundation site http://efa.org OR under First Aid links I mentioned at Julie's Idaho website. Like I think I mentioned on an earlier post, since each type might start in a separate area of the brain, the newer Pills tend to be more targeted to a Particular area too. Unless the Dr. can tell which type someone has, they might start with an olde general medication like Dilantin, or Phenobarb? in UK, unless they can find the source. It's not quackery, but more like deciding how best to service your car. If the engine won't turn over, there's no point replacing the Gas Tank or Brakes, as that's not where the problem is. If the car won't Stop when you step on the brakes, changing the Spark Plugs won't help either... So if someone has szrs. starting in one of the 2 Temporal Lobes, the medications that might work there, won't necessarily do anything for blood or electrical problems in the Frontal Lobe or other areas upstairs. And something that works for the Frontal lobe, won't help my Rt. T.Lobe if it's not absorbed there. /G. > I know a little bit about seizure types, but at local > association seminars my attention tends to wander when discussion [quoted text clipped - 18 lines] > Paul J. Chiasson > "G." <> wrote in message I posted some sites a few days ago that show > > specific first aid depending which type of szr. someone is having. The > > symptoms they display are there and the 'doctoreze' as you call it. > Thank you all so much. > [quoted text clipped - 20 lines] > and emotional characteristics that I wonder if they are related to his > epilepsy. And I would SO not want to lose those parts of him. Holly, I had the exact opposite experience with surgery. Once the focus (my RTL and 80% of my Hippocampus), my ability to appreciate art and music went through the roof. I'm studying art to find out what I like, my music ability has escalated tremendously, and I'm looking into spiritual beliefs for more that just trying to figure others out. If you want more on the possible Neurological roots of spiritualism try Dr Persinger in Canada. There was a good overview published in WIRED. his articles: http://laurentian.ca/GRAD_STUDY/FACPUBLICATIONS/PSYCHOLOGY/mpersinger.html The wired article: http://wired-vig.wired.com/wired/archive/7.11/persinger.html > Again, I am so glad y'all are here. > > Holly SignatureDave Keays Hi, My daughter has the VNS (4 years now since it was implanted at age 10).... I wouldn't hang my hopes on it. There is not a restriction on age to be able to apply it. I would really discuss it further with your neurologist and discuss what is expected. Remember typically the VNS is left in just deactivated if it is ruled out as treatment option. Regards, John > To recap for new people and those who may not remember... My 14 year old > has [quoted text clipped - 35 lines] > > holly@careplans.com www.careplans.com Maybe, one day, they'll be able to develop a use for it as a USB conduit for brain/computer access. Science fiction has been writing about such things for years. Oh, what Wilder Penfield could have done with direct brain/BUS interface. =========================================== Paul J. Chiasson http://www3.ns.sympatico.ca/paul.chiasson/ paul.chiasson@ns.sympatico.ca vsmon@ns.sympatico.ca ai714@chebucto.ns.ca ========================================== > Hi, > [quoted text clipped - 57 lines] >> >> holly@careplans.com www.careplans.com Thanks, John. I wasn't sure if the age restriction that Cody's doc mentioned just applied to the neuropace or if it was both of them. I have a call in to the clinic to ask some more questions. Holly
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