Re: Akiba, Sedona and About my grandson and Challis' absence

[Guest guest]

ROFL No you wouldn't either. Besides, insanity is probaby the only thing that keeps us stable. LOLOL Not near Sedona, ot two thousand miles away either. LOL Whatchya doin there exactly?? Challis Akiba wrote: Good grief! And you've managed to retain your sanity through all of that? I'd be a ball in the corner......of a padded room! It is no wonder Sharon wants to stay within reach! Oh yes, also...Anyone on the list near to Sedona? Rob and I might be going to go do a seminar there in Nov/Dec. Yes, I said DO, not Attend! Peace and Blessings ~*~ Akiba ~*~ Pragmatic Visionary http://yodamamma.blogspot.com/ http://www.solay-twinflames.com -- Re: About my grandson and Challis' absence Thanks, n. ) I don't know what else my Mom has said, because I *have* to read older to newer emails or it's just wrong. LOL saw the new Neuro on Wednesday and he had me go in with him ( is 19). We like the Neuro just fine and I'm looking forward to seeing if we really like him as visits come. LOL This is the same Neuro I'd been given a referral to when I asked, but never did go see him. LOL Not a lot to happen at the appointment other than a new rx, giving the seizure a name and agreeing as to the probable cause. did have Partial Seizures which began about September 1999. That coincided with a cast being removed, after breaking both the ulnar and radius in his right wrist, grotesquely shifting his hand to the side. Eww. LOL We had the Orthopedist check him out, but all was fine there.

<g> By the time he saw a Ped Neuro in October 2000, the area affected during seizures had grown. He had numbing of his right hand, then lower forearm, right foot and lower leg, and the right of his tongue. Obviously, if your tongue is numb your speech will be affected. LOL He also had a certain look in his eyes. I'd realized seizures were probably something I needed to explore before that Neuro appointment. LOL It was those seizures which lead us to finding the tumor. He had two surgeries then, and about 80% of the tumor was removed (it had been about the size of a golf ball, or slightly, slightly larger -- quite a thing to see on your thirteen year old's MRI! lol). His tumor was a JPA... Juvenile Pilocytic Astrocytoma. In his left frontal lobe, cradled by his communication centers. I remember the Neurosurgeon telling me the name and

that it would take me a bit to get it down. (We love this man, btw -- Dr. Kim Manwaring is simply awesome as a human being and certainly as a doctor). I asked him to spell it for me as I wrote it. He wrote it instead. I knew that term within half an hour. LOL About a year and a half later, the remaining tumor began to grow. Conflicting opinions on course of action and we left the Oncologist and went with the Neurosurgeon and a Ped Neuro he often worked with who was quite knowledgeable about BTs. In the month or so before 's next surgeries, those Partial Seizures began to resurface. Dilantin again (but that was already coming, because of the planned surgery). He was only to have one surgery in November 2002, but he moved during the first, scaring the life out of his Neurosurgeon and the Anesthesiologist. LOL Even those bars, each carrying a weight of

approximately 40 pounds, bolted to his head didn't hold him still and they lost their mapping and were just too rattled really anyway. <g> became a legend at Phoenix Children's Hospital. LOL Between that surgery and the next, a few days later, was sent home to wait. We stayed at my in-laws and, while there, not being on the Dilantin as he should have been, suffered his first and only Tonic-Clonic seizures. He had several to follow. Final surgery removed the tumor 100%! All follow up MRI's show 's brain is perfect. No tumor. ) There is a 1 in 2 chance of that tumor returning, the greatest risk is within the first five years, and the tumor "can come back as something different, something more aggressive". We were fortunate in the type of tumor, location and the medical professionals we found... as well as all our family and friends.

) 's last check-up was this past June. Everything looks excellent! This seizure was different from the others and says he preferred the Tonic-Clonic over this one. He's insane. LOL That set of Tonic-Clonic were the sort of seizures most of us think of... with the full body jerking, locking, and so on. Horrible thing to see in your child. However, says this one hurt where the others didn't. He remembers being very afraid during those seizures. (I remember on the hurried ride to the ER, sitting in the front, in the back, driving, and could feel another beginning. I was in that backseat faster than I knew my grand hynie could move lol. told us many times that he just wanted to turn and look at me, to find that security or comfort during the seizure, but he could not move his head -- yeah, it still makes me

cry lol It's one of the few memories in this that do <g>). Anywayyyy... This seizure came with "Autonomic" symptoms. A word a friend passed on to me while I researched. LOL He woke itching, which became burning skin, walked down stairs but found it difficult as he was losing control of his motor functions. I found him sitting on the bottom step, frantic to get his shirt off, saying his skin felt like it was on fire, and sweating profusely. I wondered if there'd been a bite and tried to get to walk into the living room. He couldn't. Couldn't move and couldn't walk. His head began weaving from side to side reminiscent of Ray or Stevie Wonder, his body lilting as if he'd fall against either wall on the stairs, his eyes moving side to side as if searching for something in a dream. He said he couldn't see, as his vision grew dark and blurry. He had

that certain look in his eyes. You know the one. That distanced, not-seeing-you, look of seizures. I got and he tried to help walk to the living room just feet away. collapsed. He said at this point he couldn't hear me anymore and could see nothing but black. This is when he lost consciousness. The next thing he remembered was being in the living room. had to turn over and drag him ( is a good 5' 11" and is 230 pounds), then he'd tried to set on the floor with his back against the couch, but could not hold himself up. Laid on the floor and as I called 911 he lifted himself up on an elbow, after complaining of nausea, and vomited. He was able to walk to the bathroom shortly after, with hovering of course. LOL From the time he was in the living room to the time we left for the ER, he went from pale to flushing the bright red of a new and bad

sunburn, itching, two doses of Benedryl given at the suggestion of the EMTs. I thought there might be a hive or two beginning, but we were never sure. Chills set in harder and harder. He vomited again, he had trouble with loose stools. Earlier he'd complained of a pain in his upper left abdomen. His BP was low as was his temp. I used my Basal Body Thermometer which I KNOW works because I use it daily LOL, and his temp was 94.7 and 94.5. His lips began turning blue before the EMTs left (and stayed that way for a good hour and a half, until we pulled into the ER -- which alone is an easy 45 minute drive, btw). Yes, they should have transported him, but they didn't and we agreed with them (in that "did this really happen" point of stupid some of us encounter momentarily rofl). At the ER his BP stayed strange and low. It probably averaged around 99 over 50 to 60 something. Once it reached 119/87 and

once it was 80-something/34. Two weeks prior, woke itching and with hives. No bites found, and no reasons for an allergic reaction. He had Benedryl (the first time ever lol) and that helped (I've since heard that this med can trigger seizures in some, but that wasn't the trigger for these). There was also muscles pain in his shoulders, chest and arms. That eased, but his arms felt "weak" for the rest of the day. Now it seems that may have been an earlier seizure or, as Neuro said, "an aura". Yet, I'm not sure if Neuro understood it was two weeks prior to this seizure and I've never heard of a two week Aura. LOLOL Neuro believes this was a Generalized Tonic-Clonic. That surprised me as I guess I anticipated a Partial Seizure, most likely Complex though fitting Simple in many ways. did loose consciousness, though, and this would be

more a full body seizure, so this is where the G T-C tag was given. is on Trileptal now, titrating to a full dose. Dilantin will remain until Trileptal is at a good level for a bit, then we'll begin tapering that. Doc states he'd like to remain on that for at least a year. With 's history, we knew his threshold for seizures was lower. Because of the tumor and space now empty but still irritated, the trauma of surgery and tumor both, and the scar tissue remaining... We're hoping this will not become something more permanent. <g> Okay, enough rambling. LOL hah! And I deleted great portions! ROFLMHO Challis n Rojas <Rojas5915Comcast (DOT) net> wrote: Highest hopes for this brave young man, and for his family! I have epilepsy (no tumour) and pray that there has been no new growth! Love, n About my grandson and Challis' absence Challis is busy researching. She can explain all of this better than I can but here's my shot at it. Some of you know that her oldest son (19 years) had surgery twice for a brain tumor several years ago. He had his check-up MRIs done in June and got the ALL CLEAR! No tumor growing back! Wonderful news. He had Grand Mal seizures during the time of his surgeries and was on dilantin. He's been off dilantin for a year or more now and has been doing great. Then-- Saturday morning he woke and

had a seizure. He came down stairs and sat on the bottom step. He couldn't walk, couldn't see and was incoherent. The ambulance crew came, checked him out and he seemed better and didn't transport him. Then his lips turned blue. Challis then called 's neurosurgeon and after talking to him took him to the ER. He had a cat scan and other tests and was put back on dilantin. Now he is scheduled for an EEG and a trip to the neuro next week. It's so scary to get a call like that about a grandchild. We've been through so much with him. Now what if I had been in Alaska when I got that call? Challis is in "research

mode" but I'm sure she'll be back soon. She is probably scanning the subject lines anyway and will not be able to resist the vaccine subjects! love to all--- Sharon Sharon (MSersLife Group Owner/Creator) Kind words may be short... but their echoes are endless.... Mother Theresa Groups are talking. We´re listening. Check out the handy changes to Yahoo! Groups.

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