Guest guest Posted October 21, 2002 Report Share Posted October 21, 2002 TAKE HER IN TO SEE HER DOCTOR. TAKE HER TO THE E.R IF NOT AVAILABLE. want to sleep this way (except for the high temp.) and ended up in ICU for respritory distress. He went into a coma at the house. He had to go on the vent and " cored " at the emergency room. Yes, we took him into the E.R. on Friday and he did all this on Saturday. If nothing else they will give some I.V. fluids to change the dark urine back. Urgently, Twana > > Hi everyone, wanted to run Sams current illness by you all. Sam came down on > Friday with a little cold and by Friday nite WHAMO what the heck just hit. > She started running 102 temps and would not move even with tylenol and > motrin. Was very withdrawn and just layed like a rag doll. She has a barky > cough, gaggy, sometimes pukes, coughs so hard that it will make her puke. > Her o2 sats were all over the boared. She did not sleep for all nite friday, > just layed there. She would respond to me, but if I was not talking to her > she would just lay and stare. She finally fell asleep at 5pm on Saturday and > slept until 1pm on Sunday(20 hrs) She did not wake up for nothing (even some > goofy lady drove her car backwards into my neighbors prch and wrecking car > in my drive in her path) and Sam never moved during all that camotion. When > she woke up at 1 pm satyed up fir 20 min then sleep another 3 hrs. Woke up > for 2/3 hours and went back to bed for the nite now. So out of 27hoursshe > has only been awake for about 3 of them. This evening she still needs o2, > cough seems looser and temp down some. But I am worried about her sleep. > Does this happen with illnesses? Should I take her to see doc? Anything > other I should be concerned about? Her siezures through this have been ok. > Only one 30sec gran mal, and few myoclonic jerks, And a few petite mals. > Handled her feeds pretty well today, but yesterday could only get in > pedialyte. Is urinateing, but it is dark in color(looked like coke yesterday > but better today) Any suggestions appreciated. > > > > > > _________________________________________________________________ > Surf the Web without missing calls! Get MSN Broadband. > http://resourcecenter.msn.com/access/plans/freeactivation.asp Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2002 Report Share Posted October 21, 2002 I'm sorry Sam is sick. It sounds like she could be acidodic, I would take her to ER immediately if she does not start waking up. Good Luck and will be thinking of you. May the wind be always at your back.... , mom to Colby, 12, COX IV< LCHAD<ADHD<ACC sons Chad 14, healthy, Caleb, 9, healthy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 2002 Report Share Posted October 22, 2002 JULIE, I WOULD BRING HER IN TO GET HER CHECKED OUT YOU NEVER KNOW WHAT'S GOING ON WITH KIDS WITH THE MITO DISEASE. GOOD LUCK MISIE Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 2002 Report Share Posted October 22, 2002 , >Is urinateing, but it is dark in color(looked like coke yesterday >but better today) Any suggestions appreciated. I just happened to stumble onto a reference to coke-colored urine today in the " Ask the Mito Doc " section of the Spring 2002 UMDF newsletter. It's written by Dr. Boles and is in reply to a question about how to determine how much exercise is appropriate in mito patients: " In some patients, rhabdomyolysis (muscle breakdown) can occur with exercise. Other potential triggers for rhabdomyolysis include illness, fever, fasting, alcohol and stress. Rhabdomyolysis should be suspected when the urine becomes 'Coca Cola colored'. If present, medical attention should be immediately sought and hydration (by mouth or iv) given to avoid possible kidney damage. " -- Mom to: Emilie (16), mito--complex IV, cp, ld Kaitlin (16), cp, asthma, a few autonomic symptoms Ian (20) migraines ....and wife to Tim, who has a heart of gold Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 2002 Report Share Posted October 22, 2002 , Thank you so much for this info. Took Sam in and they cathed her. Her urine specific gravity was 1.000 Very high and she did have blood in urine to. Her urine was dark by cath also. Her doctor ordered her to have 2 liters of lytes tonight and then we will re evaluate in am. It is scary. She is concerned that Sam may be in a metabolic acidosis crisis. Her urine test indicates she is dehydrated yet she is tolerating her feeds and fluids and making plenty of urine. But it is very dark and smelly. did not have any bacteria in it though. This rhabdo thing is scary to you know anything else on it? Ty--- >From: 31528@... >Reply-To: Mito >To: Mito >Subject: Re: Sam is sick >Date: Mon, 21 Oct 2002 22:47:21 EDT > >, > > >Is urinateing, but it is dark in color(looked like coke yesterday > >but better today) Any suggestions appreciated. > >I just happened to stumble onto a reference to coke-colored urine today >in the " Ask the Mito Doc " section of the Spring 2002 UMDF newsletter. >It's written by Dr. Boles and is in reply to a question about how >to determine how much exercise is appropriate in mito patients: > > " In some patients, rhabdomyolysis (muscle breakdown) can occur with >exercise. Other potential triggers for rhabdomyolysis include illness, >fever, fasting, alcohol and stress. Rhabdomyolysis should be suspected >when the urine becomes 'Coca Cola colored'. If present, medical >attention should be immediately sought and hydration (by mouth or iv) >given to avoid possible kidney damage. " > > > > -- Mom to: >Emilie (16), mito--complex IV, cp, ld >Kaitlin (16), cp, asthma, a few autonomic symptoms >Ian (20) migraines >...and wife to Tim, who has a heart of gold > > _________________________________________________________________ Broadband? Dial-up? Get reliable MSN Internet Access. http://resourcecenter.msn.com/access/plans/default.asp Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 2002 Report Share Posted October 22, 2002 , >This rhabdo thing is scary to you know anything else >on it? Sorry, don't know anything else. It was just by chance that I was reading that newsletter yesterday. Had never heard of rhabdomyolysis before that and probably wouldn't have paid any attention if the mention of " coca-cola colored urine " hadn't jumped out at me because of reading your message. -- Mom to: Emilie (16), mito--complex IV, cp, ld Kaitlin (16), cp, asthma, a few autonomic symptoms Ian (20) migraines ....and wife to Tim, who has a heart of gold Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 2002 Report Share Posted October 22, 2002 julie I'M NEW TOALL THIS BUT MY DAUGHTER LAST GOT SICK AT NIGHT WHICH IS NOT UNCOMMON FOR WITH HER TUBE FEEDING SHE STARTED RUNNING A FEVER AFTER A COUPLE DAYS WENT BY I BROUGHT HER IN TOSEE THE DOCTOR AND SHE HAD A URINARY TRAC INFECTION. STARTED HER IN MEDS BUT STILL WASN'T DOING WELL SAT. NIGHT HER TEMP WENT UP TO 102.9 CALLED THE DOCTOR I TOOK HER TO ER ON SUNDAY FOUND OUT SHE HAD PNEMONIA(HOWEVER YOU SPELL IT). SHE HAD A BARKY COUGH STUFFY NOSE AND JUST MISSERABLE. I FOUND OUT HER WHITE BLOOD COUNT WAS VERY LOW AND IF IT GOT ANY LOWER SHE WOULD HAVE TO BE ADMITTED BECAUSE HER BODY WAS MAKING ENOUGH WHITE BLOOD CELLS TO FIGHT THE INFECTIONS. BUT ANYWAYS I WOULD BRING HER IN TO GET CHECKED OUT BECAUSE YOU NEVER KNOW WHAT'S GOING ON WITH KIDS WITH MITO DISEASE. GOOD LUCK' MISIE Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 2002 Report Share Posted October 22, 2002 julie I'M NEW TOALL THIS BUT MY DAUGHTER LAST GOT SICK AT NIGHT WHICH IS NOT UNCOMMON FOR WITH HER TUBE FEEDING SHE STARTED RUNNING A FEVER AFTER A COUPLE DAYS WENT BY I BROUGHT HER IN TOSEE THE DOCTOR AND SHE HAD A URINARY TRAC INFECTION. STARTED HER IN MEDS BUT STILL WASN'T DOING WELL SAT. NIGHT HER TEMP WENT UP TO 102.9 CALLED THE DOCTOR I TOOK HER TO ER ON SUNDAY FOUND OUT SHE HAD PNEMONIA(HOWEVER YOU SPELL IT). SHE HAD A BARKY COUGH STUFFY NOSE AND JUST MISSERABLE. I FOUND OUT HER WHITE BLOOD COUNT WAS VERY LOW AND IF IT GOT ANY LOWER SHE WOULD HAVE TO BE ADMITTED BECAUSE HER BODY WAS MAKING ENOUGH WHITE BLOOD CELLS TO FIGHT THE INFECTIONS. BUT ANYWAYS I WOULD BRING HER IN TO GET CHECKED OUT BECAUSE YOU NEVER KNOW WHAT'S GOING ON WITH KIDS WITH MITO DISEASE. GOOD LUCK' MISIE Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 2002 Report Share Posted October 22, 2002 julie I'M NEW TOALL THIS BUT MY DAUGHTER LAST GOT SICK AT NIGHT WHICH IS NOT UNCOMMON FOR WITH HER TUBE FEEDING SHE STARTED RUNNING A FEVER AFTER A COUPLE DAYS WENT BY I BROUGHT HER IN TOSEE THE DOCTOR AND SHE HAD A URINARY TRAC INFECTION. STARTED HER IN MEDS BUT STILL WASN'T DOING WELL SAT. NIGHT HER TEMP WENT UP TO 102.9 CALLED THE DOCTOR I TOOK HER TO ER ON SUNDAY FOUND OUT SHE HAD PNEMONIA(HOWEVER YOU SPELL IT). SHE HAD A BARKY COUGH STUFFY NOSE AND JUST MISSERABLE. I FOUND OUT HER WHITE BLOOD COUNT WAS VERY LOW AND IF IT GOT ANY LOWER SHE WOULD HAVE TO BE ADMITTED BECAUSE HER BODY WAS MAKING ENOUGH WHITE BLOOD CELLS TO FIGHT THE INFECTIONS. BUT ANYWAYS I WOULD BRING HER IN TO GET CHECKED OUT BECAUSE YOU NEVER KNOW WHAT'S GOING ON WITH KIDS WITH MITO DISEASE. GOOD LUCK' MISIE Quote Link to comment Share on other sites More sharing options...
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