Guest guest Posted February 20, 2005 Report Share Posted February 20, 2005 I am getting frustrated that Lucas seems to be at a standstill as far as recovery from his febrile seizure and influenza. I also am recovering from pneumonia. Lucas continues to run low grade temps (100.7). He is also having coughing spasms. He is having such terrible episodes whereby the nebulizer does not help except maybe getting him to vomit up the phlegm. He is vomiting despite venting of his G-button for about 17 hrs a day. He does not show much interest in toys and has not slept through the night since he came home Monday from the hospital. He has been on antibiotics since Thursday with an ear infection post-hospitalization. Now my husband is sick with upper respiratory symptoms and one of my twins is hoarse and has a runny nose. finished antibiotics last Monday for walking pneumonia. seems to be doing okay. I am to return back to work on Tuesday and am scheduled for 3 nights in a row. I did 8 loads of laundry today and am headed to bed shortly. It doesn't help me to recover when I needed to shovel the driveway with since we seemed to be the most well out of the bunch of us. I just hope we can turn the corner and get better. (I am better but hoping not for a setback.) Just had to vent a little. Loriann - mom to and 12 yr old twins and Lucas 8 yrs old with acute onset of febrile seizures, ataxia, suspected mitochondrial disorder, LCHAD, global developmental delays, cortical visual impairment, hypothyroid due to pituitary malfunction etc. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2005 Report Share Posted February 21, 2005 Lucas continues to run low grade temps (100.7). He isalso having coughing spasms. Loriann, Has he seen a pulmonologist recently? Last spring, after a series of pneumonias thruout the winter, Chelsea developed a lung lining infection. I didn't know what was going on until she saw her pulm. He put her on Tobi nebs twice a day, plus oral antibiotics for 3 weeks, and that finally cleared it up. For weeks, she had coughing spells that triggered gagging & wretching. She was not sleeping well because of the coughing and congestion. Her breathing was alright, just lots more snoring and apnea, her O2 sats weren't all that great, though. I hope Lucas and the rest of your family feels better soon=) e, Chelsea's mom, Atypical Rett Syndrome (FKA nonspecific mito) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2005 Report Share Posted February 21, 2005 --Loriann, Wow, it sounds like you have a lot on your plate. Hang in there! (((((((((((hugs)))))))))))) Has Lucas had blood work done to check his electrolytes? How are you replacing the fluid that he's losing through venting? Do you usually vent him that much? Venting and discarding the fluid can cause acidosis, just like throwing up or diarrhea. Does he have a j tube or IV fluids or any other way to get fluids into him? It sounds like you need to take a trip to the ER. Would your ped write orders for labs and a fluid bolus? If the vomiting just started, could he not be tolerating the antibiotics? Yell, scream, do what it takes to have your concerns taken seriously. Mito kids can lose a lot from prolonged infections. The losses can be permanent, it happened to us. Take care Heidi - In Mito , Loriann Melby <lmelby1000@s...> wrote: > I am getting frustrated that Lucas seems to be at a > standstill as far as recovery from his febrile seizure > and influenza. I also am recovering from pneumonia. > Lucas continues to run low grade temps (100.7). He is > also having coughing spasms. He is having such > terrible episodes whereby the nebulizer does not help > except maybe getting him to vomit up the phlegm. He > is vomiting despite venting of his G-button for about > 17 hrs a day. He does not show much interest in toys > and has not slept through the night since he came home > Monday from the hospital. He has been on antibiotics > since Thursday with an ear infection > post-hospitalization. Now my husband is sick with > upper respiratory symptoms and one of my twins > is hoarse and has a runny nose. finished > antibiotics last Monday for walking pneumonia. > seems to be doing okay. I am to return back to work > on Tuesday and am scheduled for 3 nights in a row. I > did 8 loads of laundry today and am headed to bed > shortly. It doesn't help me to recover when I needed > to shovel the driveway with since we seemed to be > the most well out of the bunch of us. I just hope we > can turn the corner and get better. (I am better but > hoping not for a setback.) Just had to vent a little. > > Loriann - mom to and 12 yr old twins and > Lucas 8 yrs old with acute onset of febrile seizures, > ataxia, suspected mitochondrial disorder, LCHAD, > global developmental delays, cortical visual > impairment, hypothyroid due to pituitary malfunction etc. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2005 Report Share Posted February 21, 2005 Hi Heidi, We have been venting Lucas for about a year now. It is not uncommon for him to have over 200 cc's per day. The GI doc is aware and they know we do not replace since Lucas does not tolerate any more than what he already gets. The vomiting still occurs (more so when sick)and they are aware of that too. Lucas has a J-J tube that feeds even further distal in his jejuneum. We went to the ped today and Lucas has a sinus infection that the omnicef that he had been on since last Thursday was not helping. The ped said that his lungs sounded clear and I am to call her with an update on Wednesday. She switched his antibiotic to Biaxin. If he is not feeling well by then and his low grade fevers (was 100.7 prior to seeing her but 101.4 this afternoon after going) are not gone she will send him for a chest x-ray and blood work. I really like my ped and she will do whatever she can to keep us out of ER and the hospital. Husband also went to the doctor today and he has a severe sinus infection and they put him on amoxicillin (hope it works). I also got my leave from work due to medical reasons extended to Thursday. Maybe this will give me a chance to fully recover. Thanks for the concern, Loriann --- heidicoleman2002 wrote: > > > --Loriann, > Wow, it sounds like you have a lot on your plate. > Hang in there! > (((((((((((hugs)))))))))))) > Has Lucas had blood work done to check his > electrolytes? How are you > replacing the fluid that he's losing through > venting? Do you usually > vent him that much? Venting and discarding the > fluid can cause > acidosis, just like throwing up or diarrhea. Does > he have a j tube > or IV fluids or any other way to get fluids into > him? It sounds like > you need to take a trip to the ER. Would your ped > write orders for > labs and a fluid bolus? If the vomiting just > started, could he not > be tolerating the antibiotics? Yell, scream, do > what it takes to > have your concerns taken seriously. Mito kids can > lose a lot from > prolonged infections. The losses can be permanent, > it happened to > us. Take care > Heidi > > - In Mito , Loriann Melby > <lmelby1000@s...> wrote: > > I am getting frustrated that Lucas seems to be at > a > > standstill as far as recovery from his febrile > seizure > > and influenza. I also am recovering from > pneumonia. > > Lucas continues to run low grade temps (100.7). > He is > > also having coughing spasms. He is having such > > terrible episodes whereby the nebulizer does not > help > > except maybe getting him to vomit up the phlegm. > He > > is vomiting despite venting of his G-button for > about > > 17 hrs a day. He does not show much interest in > toys > > and has not slept through the night since he came > home > > Monday from the hospital. He has been on > antibiotics > > since Thursday with an ear infection > > post-hospitalization. Now my husband is sick with > > upper respiratory symptoms and one of my > twins > > is hoarse and has a runny nose. finished > > antibiotics last Monday for walking pneumonia. > > > seems to be doing okay. I am to return back to > work > > on Tuesday and am scheduled for 3 nights in a row. > I > > did 8 loads of laundry today and am headed to bed > > shortly. It doesn't help me to recover when I > needed > > to shovel the driveway with since we seemed > to be > > the most well out of the bunch of us. I just hope > we > > can turn the corner and get better. (I am better > but > > hoping not for a setback.) Just had to vent a > little. > > > > Loriann - mom to and 12 yr old twins > and > > Lucas 8 yrs old with acute onset of febrile > seizures, > > ataxia, suspected mitochondrial disorder, LCHAD, > > global developmental delays, cortical visual > > impairment, hypothyroid due to pituitary > malfunction etc. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2005 Report Share Posted February 21, 2005 Thanks e, The ped seemed to feel that it is just a sinus infection. I was told last Thursday that his chest x-ray they did last week showed streaks of atellectasis which is consistent with someone who just seized. When we were in the hospital Lucas was maintaining his sat's overnight so I am going to see how he does on our antibiotic change. The coughing spells have been less today but the sinus infection seems to be a good reason for the gagging episodes. Thanks for the info though. I will definitely bring it up to my ped if Lucas does not turn the corner. I too hope we start to feel better. Thanks, Loriann --- jayvelde@... wrote: > > In a message dated 2/20/2005 10:56:52 P.M. Eastern > Standard Time, > lmelby1000@... writes: > > Lucas continues to run low grade temps (100.7). He > is > also having coughing spasms. > > > Loriann, > Has he seen a pulmonologist recently? Last spring, > after a series of > pneumonias thruout the winter, Chelsea developed a > lung lining infection. I didn't > know what was going on until she saw her pulm. He > put her on Tobi nebs twice a > day, plus oral antibiotics for 3 weeks, and that > finally cleared it up. For > weeks, she had coughing spells that triggered > gagging & wretching. She was > not sleeping well because of the coughing and > congestion. Her breathing was > alright, just lots more snoring and apnea, her O2 > sats weren't all that great, > though. > > I hope Lucas and the rest of your family feels > better soon=) > > e, Chelsea's mom, Atypical Rett Syndrome (FKA > nonspecific mito) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2005 Report Share Posted February 23, 2005 I was told last Thursday that his chestx-ray they did last week showed streaks ofatellectasis which is consistent with someone who justseized. Yeesh! Poor guy! Chelsea is prone to this as well, especially with prolonged seizures. She ended up with pneumonia a couple of times when I was without Diastat, and her lungs had a mini collapse due to prolonged seizures. Sinus infections must be going around this year. Chelsea had her first ever a couple months ago, her pulm put her on Cipro and it knocked it right out of her. He had wanted to do a weaker antibiotic and Tobi nebs for 3 weeks again, but I told him Chelsea wouldn't put up with an hour of nebs twice a day, unless she was very ill. I hope Lucas feels better soon! e, Chelsea's mom, Atypical Rett Syndrome (FKA nonspecific mito) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2005 Report Share Posted February 23, 2005 Thanks e, Lucas is perking up today and I think the biaxin is taking hold. He had a couple of cughing episodes and then he gets a bunch of gunk out of his nose and he is much better. Last night he was up about 1 am and I didn't hear him. My husband said he put his head up on the pillow and he went back to sleep until 6 am when he had another short bout. I can't believe I got to sleep from 10:45 pm to 5:55 am. First time since Feb. 10th!! Keep well over there. Sure hope we knocked off this bug instead of sending it on to someone else. Loriann --- jayvelde@... wrote: > > In a message dated 2/21/2005 6:00:01 P.M. Eastern > Standard Time, > lmelby1000@... writes: > > I was told last Thursday that his chest > x-ray they did last week showed streaks of > atellectasis which is consistent with someone who > just > seized. > > > Yeesh! Poor guy! Chelsea is prone to this as well, > especially with prolonged > seizures. She ended up with pneumonia a couple of > times when I was without > Diastat, and her lungs had a mini collapse due to > prolonged seizures. > Sinus infections must be going around this year. > Chelsea had her first ever > a couple months ago, her pulm put her on Cipro and > it knocked it right out of > her. He had wanted to do a weaker antibiotic and > Tobi nebs for 3 weeks again, > but I told him Chelsea wouldn't put up with an hour > of nebs twice a day, > unless she was very ill. > I hope Lucas feels better soon! > > e, Chelsea's mom, Atypical Rett Syndrome (FKA > nonspecific mito) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2005 Report Share Posted February 24, 2005 Loriann, Glad to hear Lucas is doing better! Chelsea & I have colds, but she is doing much better than me, for once! 7 hours of uninterrupted sleep? Sounds like bliss to me=) e, Chelsea's mom, Atypical Rett Syndrome (FKA nonspecific mito) Quote Link to comment Share on other sites More sharing options...
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