Guest guest Posted May 18, 2001 Report Share Posted May 18, 2001 do you think he had a seizure? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 18, 2001 Report Share Posted May 18, 2001 Has he had seizures before? My son has a seizure type where he crys and screams and gasps uncontrollably and is not understandable-then sometimes vomits-then sleeps. It may not have been anything like that though. Another thing, last summer my very healthy now 5 year old was hit by a virus while we were on vacation. Bad chest pain where he couldn't even walk, fever, lethargy. They did EKG, blood etc. all were fine so they said it was probably a virus. Alison HELP... I feel like a fair weather friend as it seems I only post when I have a question.....for that I apologize...something about 5 kids keeps me busy <g>....Refresher....Luke is 5 1/2 years old. Diagnosed with mitochondrial myopathy of undetermined (as in didn't look further) origin at about 1 year. Been "ontrack" both physically and mentally since about 14 months and improving every year. Other than large appetite for his weight and more required naps you would never know anything is going on with him. Since August we have been concerned because his tonsils are HUGE but we are waiting to see what they do by July before yanking them out......over all healthy. Earlier this year had a complete workup by neurology, cardiology, pulmonology...everything was fine.Here's the new problem. Three days ago Luke woke up running 102 fever...no other symptoms.....by early afternoon the fever was gone back to himself. Last night we were at the ball fields watching my other 2 sons play ball....Luke was running and playing with his friends. It was a nice night out.....so he wasn't hot, sweating, etc. He ate a hamburger and then asked to play again.....he ran off about 10 steps and I called him back to tie his shoes. He was so eager to play he could hardly stand still....as I got done tying his last shoe he started crying hysterically....eyes pinched shut, etc. I couldn't understand him...thought he had something in his eye, nope. Then thought he said his throat hurt....nope...He was complaining that his chest hurt. I picked him up to hold him and his lips and fingernails turned ICE white. Held him closely and he almost immediately fell asleep. Lips and surrounding mouth area continued to pail...other parents were VERY concerned...put a blanket around him in case he was cold for some reason and was watching him....he then threw up his hamburger. He then immediately looked WORSE. Went home called the ped who said to get him to the hospital. Before I left he threw up again...just bile.....the whole time extremely sleeps/groggy (he remained that way until this morning) Of course by the time we made it to the er his lips and nails had pinked back up some. He was running 100.3 when we got there but seemed to have a hard time regulating his temp...he'd be warm then cold then warm......they did chest xrays and ekg and all was fine....they are stumped. They have no idea what was wrong and said to watch him.....ANY IDEAS what it was? Has anyone seen anything like this??? and Luke....http://www.umdf.org/support/listpolicy.html - please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 18, 2001 Report Share Posted May 18, 2001 He never has had seizures.......all I know is that it was very scary. and Luke > Has he had seizures before? My son has a seizure type where he crys and screams and gasps uncontrollably and is not understandable-then sometimes vomits-then sleeps. It may not have been anything like that though. Another thing, last summer my very healthy now 5 year old was hit by a virus while we were on vacation. Bad chest pain where he couldn't even walk, fever, lethargy. They did EKG, blood etc. all were fine so they said it was probably a virus. > Alison > HELP... > > > I feel like a fair weather friend as it seems I only post when I have > a question.....for that I apologize...something about 5 kids keeps me > busy <g>.... > > Refresher....Luke is 5 1/2 years old. Diagnosed with mitochondrial > myopathy of undetermined (as in didn't look further) origin at about > 1 year. Been " ontrack " both physically and mentally since about 14 > months and improving every year. Other than large appetite for his > weight and more required naps you would never know anything is going > on with him. Since August we have been concerned because his tonsils > are HUGE but we are waiting to see what they do by July before > yanking them out......over all healthy. Earlier this year had a > complete workup by neurology, cardiology, pulmonology...everything > was fine. > > Here's the new problem. Three days ago Luke woke up running 102 > fever...no other symptoms.....by early afternoon the fever was gone > back to himself. Last night we were at the ball fields watching my > other 2 sons play ball....Luke was running and playing with his > friends. It was a nice night out.....so he wasn't hot, sweating, > etc. He ate a hamburger and then asked to play again.....he ran off > about 10 steps and I called him back to tie his shoes. He was so > eager to play he could hardly stand still....as I got done tying his > last shoe he started crying hysterically....eyes pinched shut, etc. > I couldn't understand him...thought he had something in his eye, > nope. Then thought he said his throat hurt....nope...He was > complaining that his chest hurt. I picked him up to hold him and his > lips and fingernails turned ICE white. Held him closely and he > almost immediately fell asleep. Lips and surrounding mouth area > continued to pail...other parents were VERY concerned...put a blanket > around him in case he was cold for some reason and was watching > him....he then threw up his hamburger. He then immediately looked > WORSE. Went home called the ped who said to get him to the > hospital. Before I left he threw up again...just bile.....the whole > time extremely sleeps/groggy (he remained that way until this > morning) Of course by the time we made it to the er his lips and > nails had pinked back up some. He was running 100.3 when we got > there but seemed to have a hard time regulating his temp...he'd be > warm then cold then warm......they did chest xrays and ekg and all > was fine....they are stumped. They have no idea what was wrong and > said to watch him.....ANY IDEAS what it was? Has anyone seen > anything like this??? > > and Luke.... > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 18, 2001 Report Share Posted May 18, 2001 If it was it wasn't the typical seizure with shaking and thrasing.....he just started crying.....very very strange. and Luke > do you think he had a seizure? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 18, 2001 Report Share Posted May 18, 2001 Hi :-) Sounds an awful lot like what we saw with Madison on Sunday......playing, yet I was keeping her from over-doing, it was a little warm here but we were staying in the shade, etc...suddenly pale, cold, clammy, not sweating, and somewhat unresponsive, then vomited (5x total), and was down for the rest of the day and night, and slept most of the next day. We saw our ped Monday afternoon and did blood and urine work and found that she was VERY acidotic......ketones in the blood were almost at a toxic level. And by the time we had the blood draw she was doing MUCH better, so I cannot even imagine what her numbers had been the day before. Just got off the phone with Dr. Cohen and basically we cannot ever let this happen again, and if God forbid it does, we go straight to the hospital to try and get some control of the acidosis. This is nothing to play around with and can be very serious. Because Madison has swallowing difficulties we have a hard time keeping her hydrated, and this plays a part, but our directions are to keep her in as much as possible, and only go out (to play or spend time outside) IF we can get a fluid load (6-8 ozs) into her first, and be sure to keep her cool and not let her over-do exercise-wise while we are out. Its basically heat intolerance and they are internalizing the heat rather than expelling it and getting rid of it. This is new for Madison, so apparently it can come out of the clear blue (and appears to have an autonomic aspect to it). We live in Texas, so this summer is going to be interesting to say the least trying to keep her cool. We are also now likely going to go ahead and get the g-tube so we can do overnight drips to try and avoid this happening again. Hopefully can do the fluid loads this way too and have the opportunity to go out some this summer. She was also very warm the day after this happened, but not actually running a fever....was as though her body was not regulating her temp right or something. We had another incident a few weeks ago and that time her lips turned blue, and this too we are associating with a heat/exercise intolerance. So, if it wasn't done this time, be sure they check ketones in the urine and blood (called Acetone in the blood) and get those levels as this might tell them whats happening and then they can actually treat it. Hope this helps!! BIG hugs, Kass, proud mom to Chance(7) and Madison(4)-unspec mito, and Abby(3) ryan4me@... wrote: > I feel like a fair weather friend as it seems I only post when I have > a question.....for that I apologize...something about 5 kids keeps me > busy <g>.... > > Refresher....Luke is 5 1/2 years old. Diagnosed with mitochondrial > myopathy of undetermined (as in didn't look further) origin at about > 1 year. Been " ontrack " both physically and mentally since about 14 > months and improving every year. Other than large appetite for his > weight and more required naps you would never know anything is going > on with him. Since August we have been concerned because his tonsils > are HUGE but we are waiting to see what they do by July before > yanking them out......over all healthy. Earlier this year had a > complete workup by neurology, cardiology, pulmonology...everything > was fine. > > Here's the new problem. Three days ago Luke woke up running 102 > fever...no other symptoms.....by early afternoon the fever was gone > back to himself. Last night we were at the ball fields watching my > other 2 sons play ball....Luke was running and playing with his > friends. It was a nice night out.....so he wasn't hot, sweating, > etc. He ate a hamburger and then asked to play again.....he ran off > about 10 steps and I called him back to tie his shoes. He was so > eager to play he could hardly stand still....as I got done tying his > last shoe he started crying hysterically....eyes pinched shut, etc. > I couldn't understand him...thought he had something in his eye, > nope. Then thought he said his throat hurt....nope...He was > complaining that his chest hurt. I picked him up to hold him and his > lips and fingernails turned ICE white. Held him closely and he > almost immediately fell asleep. Lips and surrounding mouth area > continued to pail...other parents were VERY concerned...put a blanket > around him in case he was cold for some reason and was watching > him....he then threw up his hamburger. He then immediately looked > WORSE. Went home called the ped who said to get him to the > hospital. Before I left he threw up again...just bile.....the whole > time extremely sleeps/groggy (he remained that way until this > morning) Of course by the time we made it to the er his lips and > nails had pinked back up some. He was running 100.3 when we got > there but seemed to have a hard time regulating his temp...he'd be > warm then cold then warm......they did chest xrays and ekg and all > was fine....they are stumped. They have no idea what was wrong and > said to watch him.....ANY IDEAS what it was? Has anyone seen > anything like this??? > > and Luke.... > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 18, 2001 Report Share Posted May 18, 2001 There are many, many different types of seizures. The thrashing around kind is by far the most dramatic to look at but there are many more kinds also. My son's first seizure didn't look like a seizure either. When the pediatrician said that that is what he thought it was I had a hard time believing it. Then a few hours later he went on to have two more in the ER. These were grand mal seizures, the first one had just manifest differently. I would check with your pediatrican. Alison Re: HELP... If it was it wasn't the typical seizure with shaking and thrasing.....he just started crying.....very very strange. and Luke> do you think he had a seizure?http://www.umdf.org/support/listpolicy.html - please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2001 Report Share Posted May 19, 2001 He had another episode last night of the white lips and finger nails after light playing at the fields again.....he had been fine all day yesterday...no sign of stomach bug, fever, etc and was fine afterwards..... it is very odd to say the least. > Sounds to me like a vasal vagal response (normal) prior to vomiting and then > subsequently just being sick. > > Abby Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 2001 Report Share Posted May 20, 2001 , This brings back memories of something Gaby did repeadedly last year which no one could ever explain. Her 'episodes' always came after a gastrostomy feed though. Gaby would start to gag++, go pale limp and clammy, and often loose consciousness for up to half an hour.She would remain pale with 'white lips and fingers for several hours after.She was investigated for dumping syndrome, hypoglycaemia, seizure activity, vasovagal episodes and even some rare gastric/portal shunt..all of which proved nothing.It was alos thought she had a 'virus', but 6 months later when she was still doing 'it', proved that wasn't the case either. Gaby also has problems with temperature regulation, but temp seemed not to be a factor in her episodes. The 'episodes' soon stoppd in regularity, but she still has the odd one out of the blue, just to keep us on our toes.As we live out of town, getting blood drawn during an episode was almost impossible, but we did manage it once. Her lactate level was elevated, but I wasn't convinced the technique used was optimum for an accurate result. (She was peripherally shut down and veins were difficult to access). This possibly is something different again to what your son is experiencing, but goes to show, there is so much not known about our mito children. ne (in Australia). Mum to Gaby 5 years, mito disorder, ketogenic diet, G Tube, microcephaly, global delays, and the prettiest smile. -----Original Message-----From: ryan4me@... Sent: Sunday, 20 May 2001 7:02To: Mito Subject: Re: HELP...He had another episode last night of the white lips and finger nails after light playing at the fields again.....he had been fine all day yesterday...no sign of stomach bug, fever, etc and was fine afterwards..... it is very odd to say the least. > Sounds to me like a vasal vagal response (normal) prior to vomiting and then > subsequently just being sick.> > Abbyhttp://www.umdf.org/support/listpolicy.html - please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
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