Guest guest Posted June 1, 2004 Report Share Posted June 1, 2004 Could this mean the disease is progressing? Has anyone else seen this sudden decrease in energy? We have increased his CoQ and LCarnitine, but it hasn't seemed to make a difference. Any other suggestions? I would never venture to say for sure but this was certainly the case with and a few others I have known of. At this point with we decided to do homebound schooling and it helped a lot...he dind't get that tired again until about a month before he left us. I did have one question for you...the LCarnitine is not really what is recommended for mito kids (not that I think it would hurt him) but Carnitor which you have to have an RX for and namebrand is what helps our kids. It is the only thing that helped us. CoQ didn't do anythign and when we increased we noticed him having negative energy...like being jittery and stuff. Carnitor is something he took until the end and helps with a lto of things. The drug company that makes it actually spends a lot of $$ on mito research and it is the probably the most mito specific drug out there...you might want to call your doc and ask for the RX. (As always, if you want ot reply specifically to me, can you put my name in the title). Hang in there...hopefully its just a growth spurt or something --which can be hard on our kids--and he will bounce back soon! deb...mom to three great adopted kids... (07.04.96-05.26.03) with Mitochondrial Disease, Gaige age 5 with High Functioning Autism & dysfluency and Bliss age 3 with very very mild Cerebral Palsy.www.HeartLiftersGallery.comwww.LifeofLoveProject.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2004 Report Share Posted June 1, 2004 This has happened to Grace, alot for many different reasons. First, if she gets overheated she gets sick for at least that day (sometimes the next day too.) Secondly if she is just playing too hard one day, she will sleep alot the next day. Thirdly, when she had her last "brown out (as Dr.Cohen called it)" her sleeping patterns were off for about two months. This was brought on by a virus we didn't even know she had. It started mostly as sleeping alot and she was very clumbsy, eventually it caused alot of other problems (most of wich resolved themselves with time.) I would call the mito doc. if it goes on for too much longer. Better to be safe. Best wishes, I will pray he is full of energy really soon. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2004 Report Share Posted June 1, 2004 , >Could this mean the disease is >progressing? Has anyone else seen this sudden decrease in energy? Emilie does this in streaks. She'll have trouble waking up and seem extra tired for a few days or a week or so, sometimes falling asleep again later in the day. Then she'll go back to having more energy for a week or a month or whatever. I don't think in her case that it means progression so much as a waxing and waning of her disease. We can't tell if it relates to any kind of physical stress she's under--it definitely doesn't seem to be related to what time she went to bed the night before. -- Mom to: Emilie (17), mito--complex IV, cp, ld Kaitlin (17), cp, asthma, a few autonomic symptoms Ian (22) 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 June 1, 2004 Report Share Posted June 1, 2004 Hi all! Noah (7), has always awakened between 6 and 7am. Just recently he has been fighting me in the mornings when I try to get him out of bed for school. This weekend we let him sleep in. All three days and he slept until between 10 and 11am. His bed time has not changed (around 8:30pm). Could this mean the disease is progressing? Has anyone else seen this sudden decrease in energy? We have increased his CoQ and LCarnitine, but it hasn't seemed to make a difference. Any other suggestions? Watkins mom to Noah-7(Complex 1), Hannah-5, -4, Adam-2 (possible mito) Ps. Noah is non-verbal, so he can't tell me how he is feeling. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2004 Report Share Posted June 1, 2004 Us too! never gets out of bed when she needs to. Last week she was tardy 4 out of 5 days. She is in 3rd. grade and I know that the work load isn't all that tough right now. I do notice that with thw good weather and her playing outside more-she is much more tired at night and it is much more difficult to get her out of bed. I wake her at 7am and it's usually 45 minutes later and a whole lot of yelling to get her up! She is so crabby and nothing seems to go right-her hair-her clothes-breakfast-stomach aches...you name it and it's an issue! I'm looking forward to June 21st when school is done! We also take cornstarch before bed-coQ10-carnitor-vit C & E-b2 and periactin at night. Nothing really seems to help. Good Luck- , Mom to Nikki 9 Mito/CVS/GERD shannumw wrote: Hi all! Noah (7), has always awakened between 6 and 7am. Just recently he has been fighting me in the mornings when I try to get him out of bed for school. This weekend we let him sleep in. All three days and he slept until between 10 and 11am. His bed time has not changed (around 8:30pm). Could this mean the disease is progressing? Has anyone else seen this sudden decrease in energy? We have increased his CoQ and LCarnitine, but it hasn't seemed to make a difference. Any other suggestions? Watkins mom to Noah-7(Complex 1), Hannah-5, -4, Adam-2 (possible mito) Ps. Noah is non-verbal, so he can't tell me how he is feeling. Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2004 Report Share Posted June 1, 2004 Asenath always sleeps in. This morning she woke at 11:30 AM and her normal time to bed is between 9-10 PM. She will sleep even later if the noise level is kept down. We always have to wake her up on Mondays, Wednesdays, and Thursdays for her 11 AM therapies. I too have had many short term episodes of needing tons of sleep that lasted usually 3 weeks to 6 months. These times felt like I never fully could wake up and just drug throughout the day yawning constantly. Our bodies know when they need more rest and with Mito, sometimes we need more than other times. It may be progression or it may just be a time where he isn't doing as well. Just let him rest as much as he needs if possible. I know many on this list have had this experience. Darla Re: Can't get him out of BED! Us too! never gets out of bed when she needs to. Last week she was tardy 4 out of 5 days. She is in 3rd. grade and I know that the work load isn't all that tough right now. I do notice that with thw good weather and her playing outside more-she is much more tired at night and it is much more difficult to get her out of bed. I wake her at 7am and it's usually 45 minutes later and a whole lot of yelling to get her up! She is so crabby and nothing seems to go right-her hair-her clothes-breakfast-stomach aches...you name it and it's an issue! I'm looking forward to June 21st when school is done! We also take cornstarch before bed-coQ10-carnitor-vit C & E-b2 and periactin at night. Nothing really seems to help.Good Luck-, Mom to Nikki 9 Mito/CVS/GERDshannumw wrote: Hi all! Noah (7), has always awakened between 6 and 7am. Just recently he has been fighting me in the mornings when I try to get him out of bed for school. This weekend we let him sleep in. All three days and he slept until between 10 and 11am. His bed time has not changed (around 8:30pm). Could this mean the disease is progressing? Has anyone else seen this sudden decrease in energy? We have increased his CoQ and LCarnitine, but it hasn't seemed to make a difference. Any other suggestions? Watkinsmom to Noah-7(Complex 1), Hannah-5, -4, Adam-2 (possible mito) Ps. Noah is non-verbal, so he can't tell me how he is feeling.Please contact mito-owner with any problems or questions. Get more from the Web. FREE MSN Explorer download : http://explorer.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2004 Report Share Posted June 1, 2004 It is hard to tell esp. with the nonverbal thing going (same with ). I always jsut listen to her body.If she is very tired for a week or two I just let her sleep and rest as much as possible. Sometimes she just gets over it. I started puting her to bed earlier and seeing if that helps, and it usually does. When she is tired she willjust fall asleep wherever she is. She goes in and out of this sleep thing without any lasting affect. Just like " normal " children they have growth spurts. they eat more sleep more and then the opposite may happen. probably anxious about school ending. The kids get really wound up at school and that can be tiring! Hope Noah feels better,, Dawn Quote Link to comment Share on other sites More sharing options...
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