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Medical Forum / Diseases and Disorders / Arthritis / September 2005OTP:We're home from the VEEG
We got in about 8 last night and were too busy calling parents and getting unpacked/settled in to update any of our online friends. It's such a long story, but in the end the Dr. had to take Rach off all her meds. because he wasn't seeing anything on the EEG that was out of the ordinary.:( Well, she ended up having a full-blown tonic/clonic seizure at 12:45 yesterday afternoon, complete with low oxygen levels, bed-wetting and a bitten tongue. She was given rectal valium to keep the seizures from clustering, and as soon as she could swallow, we gave her some of her meds. to get her levels back up. The Dr. was thrilled with what he saw on the EEG, and how is corresponded to what he saw on the video. It gave him the information he was looking for as to the focus of Rachel's seizures. He had thought they were left temporal, but they are actually originating from the right temporal region. It may not sound significant, but it makes a difference in how she responds, not only to the seizures, but to her ability to retain information and communicate effectively. There may also be subtle differences in her treatment. For now, we are keeping her home the rest of this week, as her blood levels are still out of whack, then getting a blood draw on Monday morning so the Dr. can see if we can go anywhere with her current regimen. We are hoping to simply increase the meds. she's already taking, as she tolerates them so well. In the meantime, we've been given scripts for Diastat (rectal valium), and Tranxene, which is a longer-acting form of Ativan. I really hope we don't have to use the Diastat; Rachel fights being touched when she's post-ictal, and trying to inject something up her bum makes her go completely stiff. She was pretty mad at us yesterday about it. So, today I'm off to work to try and catch up on the stuff that nobody's done for a week. Brett will be home with Rach and then I'll be home with her tomorrow, while he goes in to work. Thank goodness I don't have to do this alone...I'd be even more berserk than I already am. Thanks for all the good wishes, prayers and support. I don't know what I'd do without my friends. Kelly C.  SignatureI don't know what your problem is, but I'll bet it's hard to pronounce.-Bumper sticker > We got in about 8 last night and were too busy calling parents and getting > unpacked/settled in to update any of our online friends. [quoted text clipped - 16 lines] > to the seizures, but to her ability to retain information and communicate > effectively. There may also be subtle differences in her treatment. Considering most people have speech functions localised to the left hemisphere, this is good news. Especially if they have to use lesioning surgery to stop the seizures down the road. I don't suppose she could tell from a standard EEG the general location in the right temporal lobe that the seizures are being triggered from? spatial resolution on EEGs is still pretty sucky. Ari Signaturespammage trappage: remove the underscores to reply I'm going to die rather sooner than I'd like. I tried to protect my neighbours from crime, and became the victim of it. Complications in hospital following this resulted in a serious illness. I now need a bone marrow transplant. Many people around the world are waiting for a marrow transplant, too. Please volunteer to be a marrow donor: http://www.abmdr.org.au/ http://www.marrow.org/ > Considering most people have speech functions localised to the left > hemisphere, this is good news. Especially if they have to use lesioning [quoted text clipped - 4 lines] > > Ari Ari, I'll see if I got this right, but we got a lot of information thrown at us at a time when we were least likely to retain all of it. I _think_ the Dr. said the focus is in the back of the temporal lobe, based on that fact that she cries out at the beginning of the seizure and the emotional centers are in that area. Trust me, I could be completely wrong here, but that sounds similar.:P Kelly C. Hi Kelly, Thanks for the update and it hurt my heart with what was taking place. What a price to pay to get answers,,,,, May you and yours have a time of peace and healing. I hate to think of what I would be like after dealing with your day. I never did handle my children in pain very well.... Still don't,,, I guess. Harv > We got in about 8 last night and were too busy calling parents and getting > unpacked/settled in to update any of our online friends. [quoted text clipped - 45 lines] > > Kelly C. > Hi Kelly, Thanks for the update and it hurt my heart with what was taking > place. What a price to pay to get answers,,,,, May you and yours have a > time of peace and healing. I hate to think of what I would be like after > dealing with your day. I never did handle my children in pain very well.... > Still don't,,, I guess. > Harv Thanks, Harv. I always do very well during the crisis and then break down later. Yesterday I actually got a bit miffed with how disorganized I perceived the nurses to be after the seizure. I know it was only a matter of a few minutes delay in getting the valium, but it seemed they were moving too slowly and looking rather confused about what to do. I finally stepped up and said "Tell me what to do and I'll do it. Let's just get it done." That seemed to surprise them a bit, but I dug in and helped change bedding, clothing, and hold Rach down to for the valium. Then I went into the bathroom, sat on the toilet and cried for about 5 minutes. I felt much better after that. Kelly C. >> Hi Kelly, Thanks for the update and it hurt my heart with what was > taking [quoted text clipped - 21 lines] > > Kelly C. You and Rachael have my heart and my prayers. I was one of those Mom's they let into the ER to hold their child while they got stitches etc. Then I would come home and shake for hours or throw up. Jo Never mess with a Momma Lion. It upsets the momma and can be cause to be eaten. grrr Duckie > Thanks, Harv. I always do very well during the crisis and then break down > later. Yesterday I actually got a bit miffed with how disorganized I [quoted text clipped - 9 lines] > > Kelly C. Signature_('> (_<_) _ _('< -quack (_<_) _ __('< *QUACK!* <_{__) _('< "|,,|_" (_<_) _('< "AFLAC!" (_<_) >For now, we are keeping her home the rest of this week, as her blood levels >are still out of whack, then getting a blood draw on Monday morning so the [quoted text clipped - 5 lines] >post-ictal, and trying to inject something up her bum makes her go >completely stiff. She was pretty mad at us yesterday about it. I hope an increase in the meds is in order because it must be humilating to get the rectal medication. I can imagine how she would hate that to bad she had to go through such an ordeal to find out what was wrong. My prayers and thoughts are with your family. -- MZ Visit my website: http://www.mzuschlag.com > I hope an increase in the meds is in order because it must be > humilating to get the rectal medication. I can imagine how she would > hate that to bad she had to go through such an ordeal to find out what > was wrong. My prayers and thoughts are with your family. -- MZ Yeah, the first thing she asked me when she started to feel better was why we had to give her a shot in the bum.:) I explained that it was the fastest way to get the medicine in at the moment and she was okay with it. Her poor bottom was sore for awhile, though. Kelly C. > We got in about 8 last night and were too busy calling parents and getting > unpacked/settled in to update any of our online friends. [quoted text clipped - 36 lines] > > Kelly C. My heart goes out to you and your family, Kelly. I will keep you all in my prayers. BIG HUGS, Carole > My heart goes out to you and your family, Kelly. I will keep you all in > my prayers. > > BIG HUGS, > Carole Thanks, Carole. Hugs back atcha, Kelly C. Hugs, good wishes, and prayers still coming your way, Kelly. luv&stuff, Denise > Hugs, good wishes, and prayers still coming your way, Kelly. > > luv&stuff, > Denise Thanks, Denise. We appreciate all the help we can get. Kelly C. Kelly, hope the new information will give the Dr. exactly what he needs to prescribe treatment. Will be good if you can increase what she's on now since it doesn't bother her. Praying for better things for Rach and all of you. Gwen > We got in about 8 last night and were too busy calling parents and getting > unpacked/settled in to update any of our online friends. [quoted text clipped - 36 lines] > > Kelly C. > Kelly, hope the new information will give the Dr. exactly what he needs to > prescribe treatment. Will be good if you can increase what she's on now > since it doesn't bother her. Praying for better things for Rach and all of > you. > Gwen Thank you, Gwen. We hope she'll be fine as frog hair really soon. Kelly C. I'm with Harv.......... don't mess with the kid. Do anything you want to me but not my daughter. I know it must have been so difficult to see her go through that (and all the other things she's been through). You and yours will be in my prayers. Angela Oh Kelly, I am wishing the best for Rachel. I hope they do get meds to help her have control over this all. Prayers, good thoughts, hugs and warm fuzzies coming your way. SignatureLove and hugs to all Good thoughts coming your way too. Squirrely Jo > We got in about 8 last night and were too busy calling parents and getting > unpacked/settled in to update any of our online friends. [quoted text clipped - 45 lines] > > Kelly C. > Oh Kelly, I am wishing the best for Rachel. I hope they do get meds to help > her have control over this all. Prayers, good thoughts, hugs and warm > fuzzies coming your way. Thanks, SqJo! I'm sure she'll be fine in no time. We have a good team behind us. Kelly C. I agree with Harv, my heart hurt while reading this post. I will add you and your family to my prayer list. Bonnie > I agree with Harv, my heart hurt while reading this post. I will add > you and your family to my prayer list. > > Bonnie Thank you, Bonnie.:) Kelly C. Kelly, I know what your going through. Been there and done that with Niki. It is so emotionally and physically draining. I hope things will be getting better for Rach now. I hope you can get some rest. debbie m. > We got in about 8 last night and were too busy calling parents and getting > unpacked/settled in to update any of our online friends. [quoted text clipped - 40 lines] > I don't know what your problem is, but I'll bet it's hard to > pronounce.-Bumper sticker > Kelly, > [quoted text clipped - 3 lines] > > debbie m. Thanks, Debbie! Do you once again have computer access at home, or are you still using the one at the library? In any case, it's nice to see you. Kelly C. {{{{{{{{Cobb family}}}}}} May this week pass quickly. Thought about you today when watching CNN and they were posting names of missing children in NO and then mentioned that this one boy who was missing was epileptic and needed medication. I got a chill. Can't imagine what I would do if I was missing a child but imagine missing one that needed insulin or any other medication to live. Duckie > We got in about 8 last night and were too busy calling parents and getting > unpacked/settled in to update any of our online friends. [quoted text clipped - 36 lines] > > Kelly C. Signature_('> (_<_) _ _('< -quack (_<_) _ __('< *QUACK!* <_{__) _('< "|,,|_" (_<_) _('< "AFLAC!" (_<_) > {{{{{{{{Cobb family}}}}}} May this week pass quickly. > Thought about you today when watching CNN and they were [quoted text clipped - 5 lines] > medication to live. > Duckie Ugh! Just the thought of all those people with medical needs going unfilled, and the consequences that will result for many of them, causes me to weep. The thought of mis-placing my own child makes me sick with anxiety. We have had to stop watching the Katrina news for the most part. My anxiety levels this week are already topped out and causing me to lose sleep. A sure recipe for a flare on my part. And then there are the animals left behind, waiting... Hugs, Kelly C. {{{{{{{{{{{{{Kelly, Brett, Rachel}}}}}}}}}}}}}}}} So sorry, Kelly, to hear that things were so difficult. Seems like such a cruel way to get answers by yanking poor Rachel off of all her meds! Glad the doctors got their answers and really praying hard that Rachel is able to regain rather quick control of her seizures again and that a little adjustment of her meds is all she will need. Poor girl, heck of a way to start off the new school year when all you want is to just be "normal" like the other kids! Hope all 3 of you can get rested up and a bit more relaxed. Keep us posted as to how things go, and know that lots of prayers and healing thoughts are winging their way to you! Hugs! Donna G > {{{{{{{{{{{{{Kelly, Brett, Rachel}}}}}}}}}}}}}}}} > [quoted text clipped - 14 lines] > > Donna G Thank you, Donna! *hugs* Kelly C. It is hard holding your own child down. My middle son stuck a knife through his leg running in the hall and I had to take him to emergency while my oldest son got ahold of my husband. I was fine until the nurse told me my husband had gotten there. I guess I went white because they told me to get out there and sit down and send him in before they had to pick me up off the floor! ((((((((((((((((((((((to the Cobbs)))))))))))))))))))))))) Loujean >We got in about 8 last night and were too busy calling parents and getting >unpacked/settled in to update any of our online friends. <clip>> >Kelly C. > It is hard holding your own child down. My middle son stuck a knife > through his leg running in the hall and I had to take him to emergency [quoted text clipped - 6 lines] > > Loujean Thanks, Loujean.:) Kelly C. |
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