Guest guest Posted July 17, 2002 Report Share Posted July 17, 2002 , We have Blue Cross and Blue Shield Of Alabama and it pays for the carnitor and all 's other supliments except Co Q-10. Horsley Re: Carnitor Deb,In the last few years Evan has developed a heart murmur, but the murmuronly is audible when he is sick. He also had been having some lightheadedness and rapid heart rate issues. His fabulous pediatrician senthim to a cardiologist who ran an EKG and echo. It was a relief when thecardiologist said the echo was normal and his EKG was good.Evan just started on Carnitor this week and he is doing great. He hasmore energy and is much more pleasant to live with. He had gotten quiteirritable and grumpy lately. I think part of the problem for Evan wasthe added weight gained from doing the cornstarch at night was taxinghis system and he needed that extra boost from Carnitor to help provideenough energy to fuel his extra 7 pounds. Now if we could just get theinsurance to agree to cover the Carnitor. Any ideas??His pediatrician prescribed the amount that was listed in Cohen'streatment article from the symposium 30 mg/kg/day divided into threedoses. I chose to start with two doses and work up to three watchingfor GI side effects. I bet your neuro would prescribe the Carnitor for if you shared the article with him.Have a great day ), Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2002 Report Share Posted July 17, 2002 Deb, In the last few years Evan has developed a heart murmur, but the murmur only is audible when he is sick. He also had been having some light headedness and rapid heart rate issues. His fabulous pediatrician sent him to a cardiologist who ran an EKG and echo. It was a relief when the cardiologist said the echo was normal and his EKG was good. Evan just started on Carnitor this week and he is doing great. He has more energy and is much more pleasant to live with. He had gotten quite irritable and grumpy lately. I think part of the problem for Evan was the added weight gained from doing the cornstarch at night was taxing his system and he needed that extra boost from Carnitor to help provide enough energy to fuel his extra 7 pounds. Now if we could just get the insurance to agree to cover the Carnitor. Any ideas?? His pediatrician prescribed the amount that was listed in Cohen's treatment article from the symposium 30 mg/kg/day divided into three doses. I chose to start with two doses and work up to three watching for GI side effects. I bet your neuro would prescribe the Carnitor for if you shared the article with him. Have a great day ), Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2002 Report Share Posted July 17, 2002 Carnitor is a prescription drug, so it should be covered. If you have an HMO, they might not have it in their formulary. You will then ask for a special form to be filled out by the doctor, so they can provide the approval. The doctor might need to say that over the counter is not pure enough or of a gaurenteed strength. They would rather let you pay for the over the counter. I had no problems with getting it filled, but my sister who has an HMO has had to go this route for some meds. laurie > > Reply-To: Mito > Date: Wed, 17 Jul 2002 15:24:14 -0500 > To: Mito > Subject: Re: Carnitor > > Deb, > > In the last few years Evan has developed a heart murmur, but the murmur > only is audible when he is sick. He also had been having some light > headedness and rapid heart rate issues. His fabulous pediatrician sent > him to a cardiologist who ran an EKG and echo. It was a relief when the > cardiologist said the echo was normal and his EKG was good. > > Evan just started on Carnitor this week and he is doing great. He has > more energy and is much more pleasant to live with. He had gotten quite > irritable and grumpy lately. I think part of the problem for Evan was > the added weight gained from doing the cornstarch at night was taxing > his system and he needed that extra boost from Carnitor to help provide > enough energy to fuel his extra 7 pounds. Now if we could just get the > insurance to agree to cover the Carnitor. Any ideas?? > > His pediatrician prescribed the amount that was listed in Cohen's > treatment article from the symposium 30 mg/kg/day divided into three > doses. I chose to start with two doses and work up to three watching > for GI side effects. I bet your neuro would prescribe the Carnitor for > if you shared the article with him. > > Have a great day ), > > > > Please contact mito-owner with any problems or questions. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2002 Report Share Posted July 18, 2002 thats a good idea to go ahead and talk to the metabolicist about...for the future...for some strange reason, he hasn't been sick since he has had mito...wierd huh? especially for a kid that gets pneumonia at least once a year... deb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2002 Report Share Posted July 18, 2002 Hi Laurie! I am from Michigan too! What area are you from? We live in Grand Rapids. Have you attended any of the support meetings yet? Haven't been able to make it yet myself. How is BC/BS covering things for you? Chelsea has BC/BS thru the MI-Child program, they do not cover quite as much as medicaid did, but she has Children's Special Health Care Services which picks up the rest. Looking forward to hearing from you! e, Chelsea's mom(non-specific mito) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2002 Report Share Posted July 18, 2002 Deb, Evan's pedi ran carnitine levels in urine and blood when he was " sick " and his sick labs showed high acyl carnitines and a high acyl to free carnitine ratio. I think both can indicate a need for carnitine supplementation. Maybe you could run " sick " labs on to see if he has problems during times of added metabolic stress. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2002 Report Share Posted July 18, 2002 Sigma Tau has some good info. laurie > From: waislandgirl@... > Reply-To: Mito > Date: Thu, 18 Jul 2002 12:01:40 EDT > To: Mito > Subject: Re: Re: Carnitor > > In a message dated 7/18/02 5:13:47 AM Pacific Daylight Time, > VisibleWorship@... writes: > > << I didn't know enough about Carnitor to defend why > he should be taking it if he has enough... >> > > Deb, did you pick up all of the Carnitor literature from the booth at the > Dallas conference? If so, or if someone can make you a copy, it would be > most helpful to just show that to your doc. (I gave all my copies away to > medical providers here.) Also, I'm on the way out the door to a doc appt for > me in Seattle, so don't have time to look it up, but do a google search for > " susan winter " and for " carnitor deficiency " and you should be able to locate > some excellent articles to print off. Dr. Winter is a physician and > researcher who has done a lot of work regarding Carnitor. > > Dena > > > Please contact mito-owner with any problems or questions. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2002 Report Share Posted July 18, 2002 Sigma Tau has some good info. laurie > From: waislandgirl@... > Reply-To: Mito > Date: Thu, 18 Jul 2002 12:01:40 EDT > To: Mito > Subject: Re: Re: Carnitor > > In a message dated 7/18/02 5:13:47 AM Pacific Daylight Time, > VisibleWorship@... writes: > > << I didn't know enough about Carnitor to defend why > he should be taking it if he has enough... >> > > Deb, did you pick up all of the Carnitor literature from the booth at the > Dallas conference? If so, or if someone can make you a copy, it would be > most helpful to just show that to your doc. (I gave all my copies away to > medical providers here.) Also, I'm on the way out the door to a doc appt for > me in Seattle, so don't have time to look it up, but do a google search for > " susan winter " and for " carnitor deficiency " and you should be able to locate > some excellent articles to print off. Dr. Winter is a physician and > researcher who has done a lot of work regarding Carnitor. > > Dena > > > Please contact mito-owner with any problems or questions. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2002 Report Share Posted July 18, 2002 My name is beth and my daughter is not yet dx w/ mito. There are many area's that she does and doesn't fit. We go to the Cleveland Clinic, OH. w/ Dr. Cohen. The muscle biopsy revealed mild neurogenic atrophy, a single cluster of atrophic fibers w/ basophiic sarcoplasm and plump central nuclei were idetified. These fibers were esterase-positive. Rare anulated atrophic fibers were seen on the esterase stain. The peripheral nerve showed a number of large axons that are either denuded of myelin or show partial loss of myelin and suggestive of primary demyelination. The large myelinated fibers are primarily affected. There was a partial defect in complex IV activity, with a suggestion of partial defects in complex III and complex II as well. Since the rates of oxidation of substrates transferring electrons via complex II and III depend on the integrity of complex IV, it is not possible to determine whether the low rates of oxidation of succinate and duroquinol represent independent defects of complexes II and III, given the fact that TMPD + ascorbated (complex IV) was also low. The polarographic and histologic features are consistent woth a mitochondrial disorder, although they do not differentiate a primary from secondary mitochondrial disorder and are not exclusively diagnostic. The above is a report that I reviewed and is very confusing for me to understand. Any interpretational help would be helpful. Thanks, mbpudd@... or mbpudd@... veldejay@... wrote: Hi Laurie! I am from Michigan too! What area are you from? We live in Grand Rapids. Have you attended any of the support meetings yet? Haven't been able to make it yet myself. How is BC/BS covering things for you? Chelsea has BC/BS thru the MI-Child program, they do not cover quite as much as medicaid did, but she has Children's Special Health Care Services which picks up the rest. Looking forward to hearing from you!e, Chelsea's mom(non-specific mito)Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
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