Guest guest Posted October 16, 2004 Report Share Posted October 16, 2004 My son 20months old has Leigh's disease. He is on many medications. He is a hefty 37pounds. The docs want to watch his weight so he only takes in 540cals a day. I started questioning how many cals he is getting from meds and wow. It was way more than I thought. CQ-10 is very high in sugar so do any of you have any ideas on how to cut the sugar without cutting the cals Ann Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 2004 Report Share Posted October 16, 2004 I just checked our bottle of the chewable Co Q10 from Tischon. 1 100mg CoQ10 chewable contains only 1g. of sugar and 4 calories. Also my two year old loves the taste of them and takes them with no problem. If the chewing is a problem they look as if they would be easy to crush and put with water. Just in case you don't know already, You can get them at www.epic4health.com. If you get the phone number from the website, call them and tell them your child has mito. You will get a discout. Best wishes. _________________________________________________________________ Is your PC infected? Get a FREE online computer virus scan from McAfee® Security. http://clinic.mcafee.com/clinic/ibuy/campaign.asp?cid=3963 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2004 Report Share Posted October 17, 2004 , Thank you. My little Elijah is 100% G-tube feed. We give him Cq-10 in a liq. form and it happens to be 20cal per 5ml and he takes it 3times a day. Thanks for the Epic website. That is where we go to order his liquid form. I will take a look and see what else is out there. I am having the pharmacy look at his clonazepam. They have the syrup content so high I can't even get it through the tube. They need to reconfigue it. I am just trying to knock some of the Cals out without taking his food away. I would rather his calories came from complex carbs instead of sugars. Ann > I just checked our bottle of the chewable Co Q10 from Tischon. > 1 100mg CoQ10 chewable contains only 1g. of sugar and 4 calories. > Also my two year old loves the taste of them and takes them with no problem. > If the chewing is a problem they look as if they would be easy to crush and > put with water. > > Just in case you don't know already, > You can get them at www.epic4health.com. If you get the phone number from > the website, call them and tell them your child has mito. You will get a > discout. > > Best wishes. > > > _________________________________________________________________ > Is your PC infected? Get a FREE online computer virus scan from McAfee® > Security. http://clinic.mcafee.com/clinic/ibuy/campaign.asp? cid=3963 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2004 Report Share Posted October 17, 2004 Have you tried crushing the pills yourself, to put through the g tube? Grace also has a g tube, but it is only for medication. We have had the same problem, as our pharmacy will mix her Actigal way to thick to put through the tube. I have found that if it is in a capsule or easily crushed, I can get it to the consistancy I like the best by adding water how I like it. We have not tried to crush the chewable CoQ10, since she will take it orally. There should be no problem in crushing it and mixing it with water to put through the tube. Best wishes. _________________________________________________________________ Don’t just search. Find. Check out the new MSN Search! http://search.msn.click-url.com/go/onm00200636ave/direct/01/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2004 Report Share Posted October 17, 2004 Hi, Ann. I know that Kirkman Labs (www.kirkmanlabs.com) sells a lot of vitamins, including CoQ10 without sugar or other additives. We used many of their products when Daphne was on the ketogenic diet because they were carb free. If you call them, they can tell you the calorie/carb amount in their supplements, so you may want to check that out. While on the diet, we also had to switch her meds to tablet forms and crush them up with water. However, she is tube fed, so palatability was not an issue for us. The crushed pills do taste awful! 540 calories seems such a small amount for a 20 month old... poor guy! We've had the opposite problem with Daphne, as she has been failure to thrive. She's a year old, and we were very proud when she recently got up to 750mls a day! (mom to Daphne -- otherwise known as Miss Cranky Pants, for the past few days! 1 year old with Infantile Spasms and developmental delay.) > > My son 20months old has Leigh's disease. He is on many medications. > He is a hefty 37pounds. The docs want to watch his weight so he only > takes in 540cals a day. I started questioning how many cals he is > getting from meds and wow. It was way more than I thought. CQ-10 is > very high in sugar so do any of you have any ideas on how to cut the > sugar without cutting the cals > > Ann Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 2004 Report Share Posted October 18, 2004 Thank you so much for your suggestions. 540cals isn't alot for a 20month old but for Eli is seems to be pleanty. He just keeps growing. I guess it is because of the damage in his brain caused by his mito. he doesn't move much at all. At this time he can only move his arms and legs but it takes all he has in one jerky fashion and once they are moved he has to work the energy back up to move them again. I guess if I sat on the couch eating jelly donuts all day I could gain weight just like he does. I also think if you were Miss cranky pants you had a good reason like most of us do when we go off the deep end. How is your little one? My Eli went through Infantile Spasms when his seizures first started. It was just aweful to find out that not only was his brain damaged from the Leigh's but the spasms could cause damage also. Crazy..... Take care and God Bless > > > > My son 20months old has Leigh's disease. He is on many medications. > > He is a hefty 37pounds. The docs want to watch his weight so he only > > takes in 540cals a day. I started questioning how many cals he is > > getting from meds and wow. It was way more than I thought. CQ-10 is > > very high in sugar so do any of you have any ideas on how to cut the > > sugar without cutting the cals > > > > Ann Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 2004 Report Share Posted October 18, 2004 Daphne's caloric needs are also lower than typical for her age and weight, so I know how that is. She isn't crawling or rolling, or those types of things, either. Actually, I was referring to Daphne as Miss Cranky Pants (sorry, I didn't make it very clear), lately, but since she's had two surgeries in the past three weeks, she deserves a bit of fussiness. Those infantile spasms are horrible, aren't they? We're not sure why Daphne's having them yet... she just had a muscle biopsy and spinal tap last week. Her other tests (chromosonal, metabolic, MRI etc) have come back pretty normal. Thankfully, Daphne has been seizure free for three months on her new medicine (Vigabatrin), so I can't help but hope that all her tests come back normal and she just gets better.... probably crazy, but you never know. > > > > > > My son 20months old has Leigh's disease. He is on many > medications. > > > He is a hefty 37pounds. The docs want to watch his weight so he > only > > > takes in 540cals a day. I started questioning how many cals he > is > > > getting from meds and wow. It was way more than I thought. CQ-10 > is > > > very high in sugar so do any of you have any ideas on how to cut > the > > > sugar without cutting the cals > > > > > > Ann Quote Link to comment Share on other sites More sharing options...
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