Guest guest Posted September 9, 2002 Report Share Posted September 9, 2002 dear julie , my thoughts and prayers are with you and samantha --i am so proud of you for being such an advocate for her and not allowing anyone to quench your spirit and your belief in your daughter. take care,mary j kish977 wrote: Hello all. Well as some of you have known , Sam was admiited Tuesday(4th) for a 23hr eeg study due to her breakthrough siezures. Well, we are still here.( I am gettin the picture that we are not going home soon) About 20min after her eeg was running there were five docs in room. Her eeg is showing siezure activity every 15-30 seconds. (even without clear clinical siezure activity noted physically) The nueros have tried gobs of different meds and combos. The only one that seems to show some improvement is phenobarbital when given iv. when they try to switch her to oral the eeg gets worse again. She has also started apnea spells with drops in oxygen. Not moving her bowls well anymore, and ran 102 fever for 45 min for no reason. They tell me that if they do not get this eeg under some control Sam will start loosing brain fuction. This morning the doc stated "we are not winning here" Please all, keep Sam in you prayers, I am not ready to loose this fight. I know the doc said we are not winning, but I feel the game is not over and I am not ready to accept defeat. I will try to keep you all updated. It is nice that this hospital(UofC) has computers and the bed side. So I may be bugging you all if that is ok.God bless all and keep those prayers going please, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2002 Report Share Posted September 9, 2002 My had seizures without behavior too. She is doing well on the keto diet. Have you tried it? Amy update > Hello all. Well as some of you have known , Sam was admiited Tuesday > (4th) for a 23hr eeg study due to her breakthrough siezures. Well, we > are still here.( I am gettin the picture that we are not going home > soon) About 20min after her eeg was running there were five docs in > room. Her eeg is showing siezure activity every 15-30 seconds. (even > without clear clinical siezure activity noted physically) The nueros > have tried gobs of different meds and combos. The only one that seems > to show some improvement is phenobarbital when given iv. when they > try to switch her to oral the eeg gets worse again. She has also > started apnea spells with drops in oxygen. Not moving her bowls well > anymore, and ran 102 fever for 45 min for no reason. They tell me > that if they do not get this eeg under some control Sam will start > loosing brain fuction. This morning the doc stated " we are not > winning here " Please all, keep Sam in you prayers, I am not ready to > loose this fight. I know the doc said we are not winning, but I feel > the game is not over and I am not ready to accept defeat. I will try > to keep you all updated. It is nice that this hospital(UofC) has > computers and the bed side. So I may be bugging you all if that is ok. > > God bless all and keep those prayers going please, > > > > > > Please contact mito-owner with any problems or questions. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 2002 Report Share Posted September 21, 2002 , Thank you so much. That is definately a good idea about wearing o2 at nite even if her 02 is up and down. Now Sam does have nites when her 02 never dips and nites when it does. On the nites that there is not dips do you still use 02 regardless? Sams heart rate knock on wood has been pretty stable lately. But she does have nites where it is all over. Her baseline could be 80-90 and with a little movement or anything it jumps to 150. Or she may have opposite. hr could be in 120-130 and for no reason dip to 80-70 and then back up. On the good note she did have a mild cardiac workup in hospital last week and all was ok. Echo ok ekg ok and chest exray ok. So now we have a good baseline. I would love to chat more with you too. , s mom >From: luvmybully2@... >Reply-To: Mito >To: Mito >Subject: Re: update >Date: Fri, 20 Sep 2002 15:11:55 EDT > >julie, > we have the same o2 problems as well and the heart also. jessica will >start >off at 98-99 then drop to 80's and bounce back up to the 90's. pulmo told >us >to use the o2 every night because the bouncing around does more damage then >o2 at night. the same holds for her heart too. it starts out at 90-100 then >slowly drops to the 80s, then 70s, then to 60s and 50s. she has occasional >drops to the 20's !!!! thank god we have night nursing, i would go crazy. >we >use breathing treatments to help keep her heart rate up at night, but when >we >give a treatment it drops her o2...lol its all a circle. we are looking at >a >pacemaker for the heart issue. the mito has damaged her autonimic system so >bad it can't control anything any more. hope this helps if you ever need to >chat look for me. > >michele, mom to jessica, 8 yrs old, mitochondrial diease, metabolic >disorder, G-J tube, MR, intractable seizures, keto kid since 3/02, bladder >dysfunction, dysautonomia and light of my life. _________________________________________________________________ MSN Photos is the easiest way to share and print your photos: http://photos.msn.com/support/worldwide.aspx Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2004 Report Share Posted February 11, 2004 Saw my Dr today and so far I've lost 85lbs. I had my surgery 6-12- 2003. Hopefully by june of this year I'll be at my goal wish of 140lbs. Seems to coming off slower than at first but I'll take any loss. I've plateaued about 3 times so far and it was really discouraging. I can't do alot of aerobic exercising b/c I have a bad knee. I live in Baltimore and am just waiting for the THAW so that I can get out and walk again Just wanted to let ya'll know how I was doing. God Bless all of you and just " keep on Keepin on " Maxine 300/215/140 Dr Magnunson s Hopkins Medical Center Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2005 Report Share Posted January 12, 2005 So glad that things worked out, and glad the findings were negative, though I am sorry that you had to take another mamogram! I hate those things! LaWanda At 11:17 AM 1/12/05, you wrote: >Thank you to all of you for your good wishes. The ultrasound turned >out to be just fine. They did do another mammogram (I feel completely >smashed now) but they have moved me into what they called the " ok " >file. So I am not too worried. > >The icing was that the lift is off the flu shot shortage and both >myself and my husband got ours on the way out the door today. That >was way cool. > >Bye for now and thanks again for keeping me in your thoughs and prayers. > > > > >On Wed, 12 Jan 2005 18:00:41 -0000, gemellodigiovanni > wrote: > > > > : > > > > Just got this message, so I'm lighting a candle for you now (those > > things reach across time and space, as I'm sure you know). > > > > Hoping and praying for the best outcome for you, > > > > Gemello > > > > > > > Like I know you are all waiting with baited breath (please note > > > sarcasm), I don't know what was up with my scale yesterday but > > today I > > > am down 4 lbs since my surgeon appt last week. Whew! Scales are > > > creepy. > > > > > > OK, so I can breath again. > > > > > > This morning is my ultrasound on my breast so everyone who reads > > this > > > give me good thoughts around 7:45-8:15 and pray for the best > > outcome. > > > I will let you all know how it goes when it is over. > > > > > > I just love you guys for listening. Thank you. > > > > > > > > > > > > -- > > > Musil in Citrus Heights > > > KP Richmond > > > Orientation: Nov. 13th (276 lbs) > > > Surgeon Consult: January 4th (246 lbs - at goal) > > > Surgery date: January 31st > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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