Guest guest Posted January 12, 2004 Report Share Posted January 12, 2004 hi everyone, we have a major problem with jess and don't know what it is or how to fix it. jess lost all function in her bladder about 3 months ago. they placed a foley cath and of course she had many infections which in turn they placed a central line so we could do antibiotics at home. they just did a supra-pubic tube on her ( foley placed through abdomen) and still she has infections. about a week ago she started with what looked like chills, no fever at the time but after the shaking stopped her temp would climb a few points and hang for a few hours. heart rate would be through the roof 175-200. she is aware all during the shaking and asks for water or sometimes throws up right before it starts. she crys her legs hurt.the weird part was that it came almost exactly 12 hrs apart. for 5 days then stopped completely. now this morning it started again. we ruled out meds and infection being a cause. any ideas? could it be a seizure? she does go to sleep afterwards but then with so little energy anyway she would go to sleep. each time its gets harder and harder for her to get over. a few hours afterwards she is back to her happy self except she is more tired.i'm worried and confused. thanks in advance, Michele mom to , 10 yrs old, mito- DNA deletion,PICC line, intractable seizures, dysautonomia, MR., pdd, g-j tube, 02 dependent, BI-pap, ketogenic diet since 3/01, perm. foley cath for bladder dysfunction, heart rhythm drops during sleep. oh and lover of anything barbie, power puff girls, and loves to sing even if you can't understand the words.....lol Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2004 Report Share Posted January 12, 2004 about a week ago she started with what looked like chills, no fever at the time but after the shaking stopped her temp would climb a few points and hang for a few hours. heart rate would be through the roof 175-200. she is aware all during the shaking and asks for water or sometimes throws up right before it starts. she crys her legs hurt.the weird part was that it came almost exactly 12 hrs apart. for 5 days then stopped completely. now this morning it started again. we ruled out meds and infection being a cause. any ideas? could it be a seizure? she ! does go to sleep afterwards but then with so little energy anyway she would go to sleep. each time its gets harder and harder for her to get over. a few hours afterwards she is back to her happy self except she is more tired. , A couple of things caught my attention. First, the shaking like chills. How long does the whole thing last? Second, you mentioned no fever before but, one after the episode. I know with seizures, the muscles are working so hard during the seizure that it can cause a temporary rise in the body temp. The heart rate increase - again, during a seizure the heart rate does increase. Throwing up -- my daughter has thrown up just before seizures. Going to sleep afterwards -- if a seizure, she would be in a postictal state and be very groggy and tired. I don't want to scare you, just wanted to let you know that I have seen all of the above with my girls and their seizures. If I were you, I think a call to the neurologist would be a good idea. Especially since they keep happening. Obviously, something isn't going right. Good luck in finding an answer. Kim - Mom to and Lindsey - (2) Partial Complex I Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2004 Report Share Posted January 12, 2004 about a week ago she started with what looked like chills, no fever at the time but after the shaking stopped her temp would climb a few points and hang for a few hours. heart rate would be through the roof 175-200. she is aware all during the shaking and asks for water or sometimes throws up right before it starts. she crys her legs hurt.the weird part was that it came almost exactly 12 hrs apart. for 5 days then stopped completely. now this morning it started again. we ruled out meds and infection being a cause. any ideas? could it be a seizure? she ! does go to sleep afterwards but then with so little energy anyway she would go to sleep. each time its gets harder and harder for her to get over. a few hours afterwards she is back to her happy self except she is more tired. , A couple of things caught my attention. First, the shaking like chills. How long does the whole thing last? Second, you mentioned no fever before but, one after the episode. I know with seizures, the muscles are working so hard during the seizure that it can cause a temporary rise in the body temp. The heart rate increase - again, during a seizure the heart rate does increase. Throwing up -- my daughter has thrown up just before seizures. Going to sleep afterwards -- if a seizure, she would be in a postictal state and be very groggy and tired. I don't want to scare you, just wanted to let you know that I have seen all of the above with my girls and their seizures. If I were you, I think a call to the neurologist would be a good idea. Especially since they keep happening. Obviously, something isn't going right. Good luck in finding an answer. Kim - Mom to and Lindsey - (2) Partial Complex I Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2004 Report Share Posted January 12, 2004 What do the intractable seizures look like? Darla: mommy to Asenath and the gang can anyone help us? hi everyone, we have a major problem with jess and don't know what it is or how to fix it. jess lost all function in her bladder about 3 months ago. they placed a foley cath and of course she had many infections which in turn they placed a central line so we could do antibiotics at home. they just did a supra-pubic tube on her ( foley placed through abdomen) and still she has infections. about a week ago she started with what looked like chills, no fever at the time but after the shaking stopped her temp would climb a few points and hang for a few hours. heart rate would be through the roof 175-200. she is aware all during the shaking and asks for water or sometimes throws up right before it starts. she crys her legs hurt.the weird part was that it came almost exactly 12 hrs apart. for 5 days then stopped completely. now this morning it started again. we ruled out meds and infection being a cause. any ideas? could it be a seizure? she does go to sleep afterwards but then with so little energy anyway she would go to sleep each time its gets harder and harder for her to get over. a few hours afterwards she is back to her happy self except she is more tired.i'm worried and confused. thanks in advance, Michele mom to , 10 yrs old, mito- DNA deletion,PICC line, intractable seizures, dysautonomia, MR., pdd, g-j tube, 02 dependent, BI-pap, ketogenic diet since 3/01, perm. foley cath for bladder dysfunction, heart rhythm drops during sleep. oh and lover of anything barbie, power puff girls, and loves to sing even if you can't understand the words.....lolPlease contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2004 Report Share Posted January 24, 2004 , thanks for the info but unfortunately jess is on the ketogenic diet so she can have no carbs or sugars and so on. i too thought it was the autonomic system as we have had this problem before with other organs when they start to fail. her stomach did the same thing two years ago right before it stopped and fell out of place.sometimes its all so confusing and i'm getting tired of trying to put it all together. thanks again, Michele mom to , 9 yrs old, mito- DNA deletion, intractable seizures, dysautonomia, MR., pdd, g-j tube, 02 dependent, BI-pap, ketogenic diet since 3/01, perm. foley cath for bladder dysfunction, heart rhythm drops during sleep. oh and lover of anything barbie, power puff girls, and loves to sing even if you can't understand the words.....lol Quote Link to comment Share on other sites More sharing options...
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