Guest guest Posted June 9, 2011 Report Share Posted June 9, 2011 We had testing done a few years ago with Dr Frye. It was a bunch of bloodwork and it took about 6 weeks for it to come back because it had to be sent out to a special lab. We had to do it at the hospital because Quest and Labcorp wouldnt do it.DaraTo: Texas-Autism-Advocacy Sent: Thu, June 9, 2011 4:55:14 PMSubject: Mitochondrial Testing Anyone had experience with pediatric mito testing at UT in Houston? We're waiting to hear the barrier questions before getting an appointment. Any idea on Federal BCBS? Anyone have any information re: mitochondrial testing for adults in Houston? Thanks ~Crystal Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2011 Report Share Posted June 9, 2011 We have orders from Dr. Frye for it at Memorial Herman as they said that is only place that does it. We had testing done a few years ago with Dr Frye. It was a bunch of bloodwork and it took about 6 weeks for it to come back because it had to be sent out to a special lab. We had to do it at the hospital because Quest and Labcorp wouldnt do it.DaraTo: Texas-Autism-Advocacy Sent: Thu, June 9, 2011 4:55:14 PMSubject: Mitochondrial Testing Anyone had experience with pediatric mito testing at UT in Houston? We're waiting to hear the barrier questions before getting an appointment. Any idea on Federal BCBS? Anyone have any information re: mitochondrial testing for adults in Houston? Thanks ~Crystal Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2011 Report Share Posted June 9, 2011 What's the purpose of it? We have orders from Dr. Frye for it at Memorial Herman as they said that is only place that does it. We had testing done a few years ago with Dr Frye. It was a bunch of bloodwork and it took about 6 weeks for it to come back because it had to be sent out to a special lab. We had to do it at the hospital because Quest and Labcorp wouldnt do it. Dara To: Texas-Autism-Advocacy Sent: Thu, June 9, 2011 4:55:14 PMSubject: Mitochondrial Testing Anyone had experience with pediatric mito testing at UT in Houston? We're waiting to hear the barrier questions before getting an appointment. Any idea on Federal BCBS? Anyone have any information re: mitochondrial testing for adults in Houston? Thanks ~Crystal Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2011 Report Share Posted June 9, 2011 To check for mitochondrial dysfunction or disease. What's the purpose of it? We have orders from Dr. Frye for it at Memorial Herman as they said that is only place that does it. We had testing done a few years ago with Dr Frye. It was a bunch of bloodwork and it took about 6 weeks for it to come back because it had to be sent out to a special lab. We had to do it at the hospital because Quest and Labcorp wouldnt do it. Dara To: Texas-Autism-Advocacy Sent: Thu, June 9, 2011 4:55:14 PMSubject: Mitochondrial Testing Anyone had experience with pediatric mito testing at UT in Houston? We're waiting to hear the barrier questions before getting an appointment. Any idea on Federal BCBS? Anyone have any information re: mitochondrial testing for adults in Houston? Thanks ~Crystal Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2011 Report Share Posted June 9, 2011 Lots of reasons to do it, mostly stemming from research that says it's an underlying cause of\mimics AU. Other research says that it parallels AU. DS and I hit *a lot* of markers for it, and the same can be traced back through my mom (Ehler Danlos, optic tracking\visual deficiencies, gastro, positive ANA\Anti-dsDNA, extreme cold insensitivity, positive CSF for glucose (lab says it was a mistake...I say...ummm), MVP [my bio mom], global developmental delay, upper body muscle weakeness, delayed reflex responses, Parkisonian movements.....for starters. And trust me when I tell you that we'll *never* go the experimental\alternative route again. We've got very good reasons. PS: In August DS will be one year totally free of any med or supplement. Dr. says he cannot ever again due to sensitivity. After the Amantadine left his system, DS went up *two years* in reading levels and from 1st to 4th in Math in the span of six months. I love having my kid back. Thanks, everyone for the advice! ~C We had testing done a few years ago with Dr Frye. It was a bunch of bloodwork and it took about 6 weeks for it to come back because it had to be sent out to a special lab. We had to do it at the hospital because Quest and Labcorp wouldnt do it.Dara To: Texas-Autism-Advocacy Sent: Thu, June 9, 2011 4:55:14 PMSubject: Mitochondrial Testing Anyone had experience with pediatric mito testing at UT in Houston? We're waiting to hear the barrier questions before getting an appointment. Any idea on Federal BCBS? Anyone have any information re: mitochondrial testing for adults in Houston? Thanks ~Crystal Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2011 Report Share Posted June 9, 2011 Hi Crystal, Dr. Frye at UT did the testing for my son. We started about 3 yrs ago with bloodwork, which did take weeks to get back. While most of it was " normal " , there was enough that was abnormal that prompted Dr. Frye to keep testing. So we did more bloodwork and urine oxidative stress testing over the next year ( appointments were about 4-5 months apart). We finally got to a point that Dr. Frye said he had probable Mito dysfunction and the only way to know for sure was a muscle biopsy. After much discussion between ourselves, including our son, we decided to go ahead. The testing revealed that he did indeed have mito dysfucntion, but not mito disease. His mito operate at about 50% of normal. We have been able to refine his supplements to include more mito suppport. Dr. Frye also determined that he had autoantibodies to folate. By prescribing high dose folinic acid, his binocular vision improved significantly. We are going to do some more bloodwork this summer to see if there has been measurable improvement with the supplements. I am not sure what barrier questions you are referring to?? If you hav enot made an appointment, I would highly recommend trying to get in with Dr. Frye. His area of expertise is mito and autism. The other docs in the departmetn not so much from what I understand. Dr. Frye really " gets " autism as a health problem and not as a problem of bad character or bad parenting. My son is 12 now, HF Aspergers, with severe asthma, allergies, endocrine and immune abnormalities. > > Anyone had experience with pediatric mito testing at UT in Houston? We're waiting to hear the barrier questions before getting an appointment. Any idea on Federal BCBS? > > Anyone have any information re: mitochondrial testing for adults in Houston? > > Thanks > > ~Crystal > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2011 Report Share Posted June 9, 2011 Is it Leucovorin your child takes? We are about to start it. Hi Crystal, Dr. Frye at UT did the testing for my son. We started about 3 yrs ago with bloodwork, which did take weeks to get back. While most of it was "normal", there was enough that was abnormal that prompted Dr. Frye to keep testing. So we did more bloodwork and urine oxidative stress testing over the next year ( appointments were about 4-5 months apart). We finally got to a point that Dr. Frye said he had probable Mito dysfunction and the only way to know for sure was a muscle biopsy. After much discussion between ourselves, including our son, we decided to go ahead. The testing revealed that he did indeed have mito dysfucntion, but not mito disease. His mito operate at about 50% of normal. We have been able to refine his supplements to include more mito suppport. Dr. Frye also determined that he had autoantibodies to folate. By prescribing high dose folinic acid, his binocular vision improved significantly. We are going to do some more bloodwork this summer to see if there has been measurable improvement with the supplements. I am not sure what barrier questions you are referring to?? If you hav enot made an appointment, I would highly recommend trying to get in with Dr. Frye. His area of expertise is mito and autism. The other docs in the departmetn not so much from what I understand. Dr. Frye really "gets" autism as a health problem and not as a problem of bad character or bad parenting. My son is 12 now, HF Aspergers, with severe asthma, allergies, endocrine and immune abnormalities. > > Anyone had experience with pediatric mito testing at UT in Houston? We're waiting to hear the barrier questions before getting an appointment. Any idea on Federal BCBS? > > Anyone have any information re: mitochondrial testing for adults in Houston? > > Thanks > > ~Crystal > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2011 Report Share Posted June 10, 2011 Crystal, I am still curious what you meant by " barrier questions " ?? It certainly seems you have the family history for mito. You do know that the only treatmetn for mito is nutritional supplements aka the mito cocktail, which is the similar in many ways to the biomed approach to autism?? I realize each autism kid is very very different. We have had tremendous success with biomed for my son, even before the mito diagnosis. His oxidative stress markers improved dramatically from the time just before we started supplements to a couple of years ago. The mito diagnosis has allowed us to more specifically target the remaining dysfunction. We have added in CoQ10 and Vit E to the supps he alredy takes. We are slowly adding in Carnitine, as he reacted to the standard doses very badly. Dr. Frye believes his reaction to Carnitine was a result of the toxins/waste in his cells being allowed to spill out too fast at the standard doses ( 300-900mg/day). We are using a liquid form and only taking 100 mg/day and he is tolerating well so far. The high dose gave him double vision, stomach pain, and severe headaches. I never allowed any of the " standard " pharmaceuticals for Autism or ADHD, although they were pushed pretty heavily. The standard pharmaceuticals for his asthma cause him many problems and he has developed a serious sensitivity to some steroids. From talking to other mito parents, sensitivity to pharmaceuticals is very very common - even antibiotics. Very few pharmaceuticals are tested for mitochondrial toxicity. > > > > >  > > > We had testing done a few years ago with Dr Frye. It was a bunch of bloodwork and it took about 6 weeks for it to come back because it had to be sent out to a special lab. We had to do it at the hospital because Quest and Labcorp wouldnt do it. > Dara > > > > > > > > > To: Texas-Autism-Advocacy > Sent: Thu, June 9, 2011 4:55:14 PM > Subject: Mitochondrial Testing > >  > > > > > > > Anyone had experience with pediatric mito testing at UT in Houston? We're waiting to hear the barrier questions before getting an appointment. Any idea on Federal BCBS? >  > Anyone have any information re: mitochondrial testing for adults in Houston? >  > Thanks >  > ~Crystal > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2011 Report Share Posted June 10, 2011 Thanks for the great info. I have heard great things about Dr. Frye, but we're trying for Kay Koenig at UT's pedi mito clinic. We do see Dr. at the other end of Dr. Frye's office...and they weren't very willing to refer us down there. I've heard good things about Dr. Koenig, too. Glad to hear your son is doing better. ~C Hi Crystal,Dr. Frye at UT did the testing for my son. We started about 3 yrs ago with bloodwork, which did take weeks to get back. While most of it was "normal", there was enough that was abnormal that prompted Dr. Frye to keep testing. So we did more bloodwork and urine oxidative stress testing over the next year ( appointments were about 4-5 months apart). We finally got to a point that Dr. Frye said he had probable Mito dysfunction and the only way to know for sure was a muscle biopsy. After much discussion between ourselves, including our son, we decided to go ahead. The testing revealed that he did indeed have mito dysfucntion, but not mito disease. His mito operate at about 50% of normal.We have been able to refine his supplements to include more mito suppport. Dr. Frye also determined that he had autoantibodies to folate. By prescribing high dose folinic acid, his binocular vision improved significantly. We are going to do some more bloodwork this summer to see if there has been measurable improvement with the supplements.I am not sure what barrier questions you are referring to?? If you hav enot made an appointment, I would highly recommend trying to get in with Dr. Frye. His area of expertise is mito and autism. The other docs in the departmetn not so much from what I understand. Dr. Frye really "gets" autism as a health problem and not as a problem of bad character or bad parenting.My son is 12 now, HF Aspergers, with severe asthma, allergies, endocrine and immune abnormalities.>> Anyone had experience with pediatric mito testing at UT in Houston? We're waiting to hear the barrier questions before getting an appointment. Any idea on Federal BCBS?> > Anyone have any information re: mitochondrial testing for adults in Houston?> > Thanks> > ~Crystal> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2011 Report Share Posted June 10, 2011 DS is not on *any* psychotropic, anti-viral, or vitamin supplement.....down from eight last Summer. We've been free for almost one year and have the story to tell. ~C Hi Crystal,Dr. Frye at UT did the testing for my son. We started about 3 yrs ago with bloodwork, which did take weeks to get back. While most of it was "normal", there was enough that was abnormal that prompted Dr. Frye to keep testing. So we did more bloodwork and urine oxidative stress testing over the next year ( appointments were about 4-5 months apart). We finally got to a point that Dr. Frye said he had probable Mito dysfunction and the only way to know for sure was a muscle biopsy. After much discussion between ourselves, including our son, we decided to go ahead. The testing revealed that he did indeed have mito dysfucntion, but not mito disease. His mito operate at about 50% of normal.We have been able to refine his supplements to include more mito suppport. Dr. Frye also determined that he had autoantibodies to folate. By prescribing high dose folinic acid, his binocular vision improved significantly. We are going to do some more bloodwork this summer to see if there has been measurable improvement with the supplements.I am not sure what barrier questions you are referring to?? If you hav enot made an appointment, I would highly recommend trying to get in with Dr. Frye. His area of expertise is mito and autism. The other docs in the departmetn not so much from what I understand. Dr. Frye really "gets" autism as a health problem and not as a problem of bad character or bad parenting.My son is 12 now, HF Aspergers, with severe asthma, allergies, endocrine and immune abnormalities.>> Anyone had experience with pediatric mito testing at UT in Houston? We're waiting to hear the barrier questions before getting an appointment. Any idea on Federal BCBS?> > Anyone have any information re: mitochondrial testing for adults in Houston?> > Thanks> > ~Crystal> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2011 Report Share Posted June 10, 2011 Yup...DS has been tested for Vitamin D deficiency and he is (21, I believe as of last Summer). He was on Methylated vitamin d, but we had to stop seeing the docs in that practice and never got back on it. We're testing it again. Thanks ~C We had testing done a few years ago with Dr Frye. It was a bunch of bloodwork and it took about 6 weeks for it to come back because it had to be sent out to a special lab. We had to do it at the hospital because Quest and Labcorp wouldnt do it.Dara To: Texas-Autism-Advocacy Sent: Thu, June 9, 2011 4:55:14 PMSubject: Mitochondrial Testing Anyone had experience with pediatric mito testing at UT in Houston? We're waiting to hear the barrier questions before getting an appointment. Any idea on Federal BCBS? Anyone have any information re: mitochondrial testing for adults in Houston? Thanks ~Crystal Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2011 Report Share Posted June 10, 2011 , Severe asthma, allergies, immunio problems, etc is caused by severe vitamin D deficiency. Have your kid tested for it and treat it ASAP. 2000 IU of vitamin D3 per 25lbs of body weight is a good start to fix that. It's very cheap supplement. http://www.vitamindcouncil.org/health-conditions/ > > > > Anyone had experience with pediatric mito testing at UT in Houston? We're waiting to hear the barrier questions before getting an appointment. Any idea on Federal BCBS? > > > > Anyone have any information re: mitochondrial testing for adults in Houston? > > > > Thanks > > > > ~Crystal > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2011 Report Share Posted June 10, 2011 It's pretty simple. You probably won't really need to see the doctor anyway since it is so common. Rule of thumb for anyone with health problem is 2000 IU per 25lbs of body weight (1000 IU for anyone without health problem) plus 400 mg of magnesium a day for adults. (less for kids). They don't cost very much. Just look for Vitamin D3 supplement with different doses such as 400, 1000, 2000, 4000, 5000, etc. Figure out how much you need and go with the daily dose. After 3 months, test blood for it and find out where it is. Adjust dose accordingly. You want to target for 80-100 ng/ml for your son. Most likely, it'll be 8000-10000 IU a day for your son. Yup...DS has been tested for Vitamin D deficiency and he is (21, I believe as of last Summer). He was on Methylated vitamin d, but we had to stop seeing the docs in that practice and never got back on it. We're testing it again. Thanks ~C We had testing done a few years ago with Dr Frye. It was a bunch of bloodwork and it took about 6 weeks for it to come back because it had to be sent out to a special lab. We had to do it at the hospital because Quest and Labcorp wouldnt do it. Dara To: Texas-Autism-Advocacy Sent: Thu, June 9, 2011 4:55:14 PMSubject: Mitochondrial Testing Anyone had experience with pediatric mito testing at UT in Houston? We're waiting to hear the barrier questions before getting an appointment. Any idea on Federal BCBS? Anyone have any information re: mitochondrial testing for adults in Houston? Thanks ~Crystal Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2011 Report Share Posted June 10, 2011 It seems that before we get an appointment at UT Pedi Mito Clinic, the staffing RN just wants to ask a few screening questions. I tagged that as "barrier" questions...pretty standard stuff. As for the treatments for mito re: biomed....yes, I'm aware. At least this time around I'd like a medical doctor trained in prescribing it and monitoring it to be in charge. We went the biomed route last year with a well known Neurosensory practice. The antivirals interacted with the psychotropics which kick started a hellacious Tardive Dyskinesia and a week in the hospital. All meds were prescribed by top docs....and we now can't tell if long term biomed\psychotropics caused\exasperated symptoms and diagnoses, if there's an underlying neuromuscular condition (hello mito, too), or all the above. So....I'd really rather go see a specialist who *gets* Autism but has a huge amount of experience in the other end. *And* I'll never go the alternative route again. Having to restrain your child from wild Parkisonian movements, hallucinations, and trying to hurt himself if not worth it. I''m also aware that there's a large number of mito variants which all entail diferent protocols. I also want a medical manifestation if it *is* Mito. Been down that road too. ~C Crystal,I am still curious what you meant by "barrier questions"?? It certainly seems you have the family history for mito. You do know that the only treatmetn for mito is nutritional supplements aka the mito cocktail, which is the similar in many ways to the biomed approach to autism?? I realize each autism kid is very very different. We have had tremendous success with biomed for my son, even before the mito diagnosis. His oxidative stress markers improved dramatically from the time just before we started supplements to a couple of years ago. The mito diagnosis has allowed us to more specifically target the remaining dysfunction. We have added in CoQ10 and Vit E to the supps he alredy takes. We are slowly adding in Carnitine, as he reacted to the standard doses very badly. Dr. Frye believes his reaction to Carnitine was a result of the toxins/waste in his cells being allowed to spill out too fast at the standard doses ( 300-900mg/day). We are using a liquid form and only taking 100 mg/day and he is tolerating well so far. The high dose gave him double vision, stomach pain, and severe headaches. I never allowed any of the "standard" pharmaceuticals for Autism or ADHD, although they were pushed pretty heavily. The standard pharmaceuticals for his asthma cause him many problems and he has developed a serious sensitivity to some steroids. From talking to other mito parents, sensitivity to pharmaceuticals is very very common - even antibiotics. Very few pharmaceuticals are tested for mitochondrial toxicity. > > > > >  > > > We had testing done a few years ago with Dr Frye. It was a bunch of bloodwork and it took about 6 weeks for it to come back because it had to be sent out to a special lab. We had to do it at the hospital because Quest and Labcorp wouldnt do it.> Dara> > > > > > > > > To: Texas-Autism-Advocacy > Sent: Thu, June 9, 2011 4:55:14 PM> Subject: Mitochondrial Testing> >  > > > > > > > Anyone had experience with pediatric mito testing at UT in Houston? We're waiting to hear the barrier questions before getting an appointment. Any idea on Federal BCBS?>  > Anyone have any information re: mitochondrial testing for adults in Houston?>  > Thanks>  > ~Crystal> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2011 Report Share Posted June 10, 2011 I think I missed something. What are barrier questions? What is Federal BCBS? If you do find out your child or adult has a Mito disorder what do you do about it? Is this for tracking purposes, or some kind of federal funds to support those with mito? Okay, I can dream...... Trina Anyone had experience with pediatric mito testing at UT in Houston? We're waiting to hear the barrier questions before getting an appointment. Any idea on Federal BCBS? Anyone have any information re: mitochondrial testing for adults in Houston? Thanks ~Crystal Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2011 Report Share Posted June 10, 2011 (1) Barrier questions: screening questions from the triage nurse at the clinic to see if you meet basic criteria before an appointment is made. (2) Federal BCBS: Blue Cross Blue Shield for Federal Employees. In this case, DS's dad is Court Ordered to pay through his Navy Reserve insurance, thus Federal BCBS. (3) Why? There are a multitude of variants of mitochondrial dysfunction, and each definitive diagnosis gets us closer of knowing which area to target and how. And, the more I read about it and talk to other parents the more it makes sense...especially in how it mimics AU. So I keep hearing "so you get a diganosis..then what?" How is that different than when we got our AU diagnosis? Did we all say "oh, so there's no help for it...why did we get the diagnosis?" Nope. Here's an article that summarizes recent research: http://www.mitoaction.org/files/Autism-OXPHOS_1.pdf The other reason why we're doing this is that we have far more medical concerns that we do AU concerns, and it may be that an underlying mitochondrial condition is at the heart of the matter. At the very least, if it is positive I'm much more confident of getting a medical manifestation to be taken seriously over an AU diagnosis...which schools have ignored or barely considered for years. As as for Federal\State services.....I can see MDCP happening with a mito diagnosis over AU. ~Crystal--- I think I missed something. What are barrier questions? What is Federal BCBS? If you do find out your child or adult has a Mito disorder what do you do about it? Is this for tracking purposes, or some kind of federal funds to support those with mito? Okay, I can dream...... Trina Anyone had experience with pediatric mito testing at UT in Houston? We're waiting to hear the barrier questions before getting an appointment. Any idea on Federal BCBS? Anyone have any information re: mitochondrial testing for adults in Houston? Thanks ~Crystal Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2011 Report Share Posted June 11, 2011 Yes, he is deficient in Vit D and has been on 5000 IU D3 for the last year. > > > > > > Anyone had experience with pediatric mito testing at UT in Houston? We're waiting to hear the barrier questions before getting an appointment. Any idea on Federal BCBS? > > > > > > Anyone have any information re: mitochondrial testing for adults in Houston? > > > > > > Thanks > > > > > > ~Crystal > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2011 Report Share Posted June 11, 2011 Crystal, Sent you a private email about Koenig. I do not know her stance on supps or mito cocktail however. Dr. Frye is very open to supplements and understands adverse reactions ( or at least acknowledges it - which is big in my book!) He does not push meds and LISTENS to Moms who report adverse effects. I have heard from parents whose children have seen Dr. Koenig that she can be dismissive of such. I have no stake in which doctor you see, but my son having been a long term patient of Dr. Frye, I can honestly say he has been there every step of the way for us. I know my son is not his most severely affected patient and is relatively healthy compared to many he sees, but when medication problems come up or issues I am not sure how to handle, he has always responded promptly. Feel free to write me back to discuss further if you like... > > > > > > > > > >  > > > > > > We had testing done a few years ago with Dr Frye. It was a bunch of bloodwork and it took about 6 weeks for it to come back because it had to be sent out to a special lab. We had to do it at the hospital because Quest and Labcorp wouldnt do it. > > Dara > > > > > > > > > > > > > > > > From: Crystal <singleparentasd@> > > To: Texas-Autism-Advocacy > > Sent: Thu, June 9, 2011 4:55:14 PM > > Subject: Mitochondrial Testing > > > >  > > > > > > > > > > > > > > Anyone had experience with pediatric mito testing at UT in Houston? We're waiting to hear the barrier questions before getting an appointment. Any idea on Federal BCBS? > >  > > Anyone have any information re: mitochondrial testing for adults in Houston? > >  > > Thanks > >  > > ~Crystal > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2011 Report Share Posted June 11, 2011 That's great. What was his level when he first got tested for it and where he is now? It seems to work best for autistic kids when it's at 80-100 ng/ml. Keep it in mind that too much vitamin A can interfere with vitamin D's effect on your health. Just have to make sure multi vitamins has vitamin A in the form of beta carotene, not palmate, retinol, etc. http://www.vitamindcouncil.org/news-archive/2008/should-i-supplement-with-vitamin-a/ Yes, he is deficient in Vit D and has been on 5000 IU D3 for the last year. > > > > > > Anyone had experience with pediatric mito testing at UT in Houston? We're waiting to hear the barrier questions before getting an appointment. Any idea on Federal BCBS? > > > > > > Anyone have any information re: mitochondrial testing for adults in Houston? > > > > > > Thanks > > > > > > ~Crystal > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2011 Report Share Posted June 12, 2011 If the bio med doctor you are referring to is the one I think you are he is a medical doctor as is the other doctor on his staff. These are not " DAN " doctors. In regards to Tardive Dyskenisia most research I have seen relates it to psychotropics...see here. http://seroquel.legalview.info/articles/seroquel-side-effects-could-be-deadly/65287/ Many people have taken short term anti virals with very good results. While it is important not to mix certain drugs together there are instances where parents forget to mention what other meds that their child is taking. (not that you did but it does happen). We have taken Amantadine in the past as well as Valtrex but have not taken any for over a year. My son was diagnosed recently with PANDAS but likely it has been an issue for quite some time. He is also low in vitamin D. He takes 5000 IU a day but when I increased it he complained of heart flutterings. It is also important to get enough magnesium when you take vitamin D. My son and I are both low in Vitamin D even after taking 5000 IU a day. Trina Crystal,Sent you a private email about Koenig. I do not know her stance on supps or mito cocktail however. Dr. Frye is very open to supplements and understands adverse reactions ( or at least acknowledges it - which is big in my book!) He does not push meds and LISTENS to Moms who report adverse effects. I have heard from parents whose children have seen Dr. Koenig that she can be dismissive of such. I have no stake in which doctor you see, but my son having been a long term patient of Dr. Frye, I can honestly say he has been there every step of the way for us. I know my son is not his most severely affected patient and is relatively healthy compared to many he sees, but when medication problems come up or issues I am not sure how to handle, he has always responded promptly. Feel free to write me back to discuss further if you like... > > > > > > > > > >  > > > > > > We had testing done a few years ago with Dr Frye. It was a bunch of bloodwork and it took about 6 weeks for it to come back because it had to be sent out to a special lab. We had to do it at the hospital because Quest and Labcorp wouldnt do it. > > Dara> > > > > > > > > > > > > > > > From: Crystal <singleparentasd@>> > To: Texas-Autism-Advocacy > > Sent: Thu, June 9, 2011 4:55:14 PM> > Subject: Mitochondrial Testing> > > >  > > > > > > > > > > > > > > Anyone had experience with pediatric mito testing at UT in Houston? We're waiting to hear the barrier questions before getting an appointment. Any idea on Federal BCBS?> >  > > Anyone have any information re: mitochondrial testing for adults in Houston?> >  > > Thanks> >  > > ~Crystal> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2011 Report Share Posted June 13, 2011 We're going through the folate antibodies testing now with Dr. Frye. He's confident the kiddos have cerebral folate insufficiency. So Lecoverin is likely in our future. We're still waiting insurance approval on the spinal tap and muscle bx. Byrne Read our kids'stories online at Caring Bridge - http://www.caringbridge.org/visit/prestonbyrne and http://www.caringbridge.org/visit/toribyrne To: "Texas-Autism-Advocacy " <Texas-Autism-Advocacy >Sent: Thu, June 9, 2011 10:52:37 PMSubject: Re: Re: Mitochondrial Testing Is it Leucovorin your child takes? We are about to start it. Hi Crystal,Dr. Frye at UT did the testing for my son. We started about 3 yrs ago with bloodwork, which did take weeks to get back. While most of it was "normal", there was enough that was abnormal that prompted Dr. Frye to keep testing. So we did more bloodwork and urine oxidative stress testing over the next year ( appointments were about 4-5 months apart). We finally got to a point that Dr. Frye said he had probable Mito dysfunction and the only way to know for sure was a muscle biopsy. After much discussion between ourselves, including our son, we decided to go ahead. The testing revealed that he did indeed have mito dysfucntion, but not mito disease. His mito operate at about 50% of normal.We have been able to refine his supplements to include more mito suppport. Dr. Frye also determined that he had autoantibodies to folate. By prescribing high dose folinic acid, his binocular vision improved significantly. We are going to do some more bloodwork this summer to see if there has been measurable improvement with the supplements.I am not sure what barrier questions you are referring to?? If you hav enot made an appointment, I would highly recommend trying to get in with Dr. Frye. His area of expertise is mito and autism. The other docs in the departmetn not so much from what I understand. Dr. Frye really "gets" autism as a health problem and not as a problem of bad character or bad parenting.My son is 12 now, HF Aspergers, with severe asthma, allergies, endocrine and immune abnormalities.>> Anyone had experience with pediatric mito testing at UT in Houston? We're waiting to hear the barrier questions before getting an appointment. Any idea on Federal BCBS?> > Anyone have any information re: mitochondrial testing for adults in Houston?> > Thanks> > ~Crystal> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2011 Report Share Posted June 13, 2011 Im just curious does dr frye test all kids for the folate and mito disorders? Or what does he look at to determine whether further testing is needed? Does he just run basic labs first then go from there? Does he test heavy metals and yeast and etc too?Sent from my Motorola ATRIX™ 4G on AT & T Re: Re: Mitochondrial Testing Is it Leucovorin your child takes? We are about to start it. Hi Crystal,Dr. Frye at UT did the testing for my son. We started about 3 yrs ago with bloodwork, which did take weeks to get back. While most of it was "normal", there was enough that was abnormal that prompted Dr. Frye to keep testing. So we did more bloodwork and urine oxidative stress testing over the next year ( appointments were about 4-5 months apart). We finally got to a point that Dr. Frye said he had probable Mito dysfunction and the only way to know for sure was a muscle biopsy. After much discussion between ourselves, including our son, we decided to go ahead. The testing revealed that he did indeed have mito dysfucntion, but not mito disease. His mito operate at about 50% of normal.We have been able to refine his supplements to include more mito suppport. Dr. Frye also determined that he had autoantibodies to folate. By prescribing high dose folinic acid, his binocular vision improved significantly. We are going to do somemore bloodwork this summer to see if there has been measurable improvement with the supplements.I am not sure what barrier questions you are referring to?? If you hav enot made an appointment, I would highly recommend trying to get in with Dr. Frye. His area of expertise is mito and autism. The other docs in the departmetn not so much from what I understand. Dr. Frye really "gets" autism as a health problem and not as a problem of bad character or bad parenting.My son is 12 now, HF Aspergers, with severe asthma, allergies, endocrine and immune abnormalities.>> Anyone had experience with pediatric mito testing at UT in Houston? We're waiting to hear the barrier questions before getting an appointment. Any idea on Federal BCBS?> > Anyone have any information re: mitochondrial testing for adults in Houston?> > Thanks> > ~Crystal> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2011 Report Share Posted June 13, 2011  Just wanted to chime in here. The test for Cerebral Folate Deficiency (CFD) is a spinal tap...and who wants to put their kid through that if it can be avoided? There are a couple of less invasive options. The causes of primary CFD are genetic, involving FR1, RFC1, FBP1, MTHFR, and probably some other genes as well. Mutations of these genes can be detected through genetic testing, so that is one option to avoid the spinal tap. The other option is just to do a trial of Leucovorin. My son took Leucovorin for about a year because of a suspected cerebral folate deficiency. Secondary CFD can result from anti-convulsant medications, which was suspected in my son's case. Patients who really have CFD will have a significant improvement from Leucovorin. CFD is pretty rare, so there's not a huge body of literature about it. My friend's daughter was one of the first cases of it to be published. You can read the article here: http://www.bh4.org/pdf/moretti.pdf Leucovorin made a huge difference. It probably kept her alive. But, now, at the age of 13, her condition is getting worse. She no longer walks, she has lost bowel control, and her ability to swallow is diminished. My friend said the next thing to go will be control of her diaphragm. It is heartbreaking. Geraldine Re: Re: Mitochondrial Testing Is it Leucovorin your child takes? We are about to start it. Hi Crystal,Dr. Frye at UT did the testing for my son. We started about 3 yrs ago with bloodwork, which did take weeks to get back. While most of it was "normal", there was enough that was abnormal that prompted Dr. Frye to keep testing. So we did more bloodwork and urine oxidative stress testing over the next year ( appointments were about 4-5 months apart). We finally got to a point that Dr. Frye said he had probable Mito dysfunction and the only way to know for sure was a muscle biopsy. After much discussion between ourselves, including our son, we decided to go ahead. The testing revealed that he did indeed have mito dysfucntion, but not mito disease. His mito operate at about 50% of normal.We have been able to refine his supplements to include more mito suppport. Dr. Frye also determined that he had autoantibodies to folate. By prescribing high dose folinic acid, his binocular vision improved significantly. We are going to do some more bloodwork this summer to see if there has been measurable improvement with the supplements.I am not sure what barrier questions you are referring to?? If you hav enot made an appointment, I would highly recommend trying to get in with Dr. Frye. His area of expertise is mito and autism. The other docs in the departmetn not so much from what I understand. Dr. Frye really "gets" autism as a health problem and not as a problem of bad character or bad parenting.My son is 12 now, HF Aspergers, with severe asthma, allergies, endocrine and immune abnormalities.>> Anyone had experience with pediatric mito testing at UT in Houston? We're waiting to hear the barrier questions before getting an appointment. Any idea on Federal BCBS?> > Anyone have any information re: mitochondrial testing for adults in Houston?> > Thanks> > ~Crystal> Quote Link to comment Share on other sites More sharing options...
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