Guest guest Posted June 8, 2010 Report Share Posted June 8, 2010 Are you looking for a DAN doc, then? We see Dr. Berger in Tampa.Have you done any biomedical yet, besides the L-carnitine? Okay, my story is long but I'll just write the basics, she was born on time, had major feeding issues, 9 years old and still has major feeding issues - her soft spot closed early - first seizure at 3 months - developmentally delayed - Carnitine deficient at 14 months and put on L carnitine - seizures continued with abnormal EEG's, BUT normal IQ and sweet kid, tells eveyrone she loves them and hugs them, told she has autism at 2 but very social and good eye contact, speech was poor, but a loving child, she has a carbohydrate transporter disorder 271.9diagnosis by age 7 her IQ had fallen to 62 it's 58 now and she's 9. Seizures keep hitting hard. Doctor says - not autism Lennox Gastaut Syndrome - now her right leg is longer than the left, she can't run or jump or play and lays still most of the time. had the CGH microarray came back partial duplication on the short arm 16 at 11.2 Daddy has the same so it means nothing they say and then VLCAD comes back off and the lab results read 'probable mitochondrial in origins' BUT no test done to confirm that YET! In the mean time, she's sick all the time just spent a week in PICU with a prolapsed rectum and c-diff and she's still sick, we see the doctors again today. She's alway sick. She misses more school than she attends. We love her so much, she is our whole world but we're afraid we're going to lose her. We're going to pay a doctor private to look at all her tests and records and tell us what we need to do. Our insurance has referrals in for 5 months now and NO appointment YET. We're too scared to keep waiting. Anyone else have a similar story? I hope not! Christy mother to Amy 9 years old -- Toni------Mind like a steel trap...Rusty and illegal in 37 states. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2010 Report Share Posted June 8, 2010 We’ve done nothing but wait on Amy’s doctors to send us to another doctor and so far that hasn’t happened. We’re trying to get in where we pay out of pocket to a doctor in Atlanta. No, we don’t want a DAN doctor – Amy is no longer classified as autistic and they think that diagnosis was a mistake, the neuropsychologist has done extensive testing and feels she doesn’t fit autism – BUT we thought all these years she was!! Christy " Let not your heart be troubled, " His tender words I hear. And resting on His goodness, I lose all doubt and fears. Though by the path He leadth, one step is all I see. But His eye is on the sparrow, so I know He watches me. http://www.youtube.com/watch?v=s9NALyRQjJM http://www.caringbridge.org/visit/amybac/guestbook From: mb12 valtrex [mailto:mb12 valtrex ] On Behalf Of Toni Marie Lombardo Sent: Tuesday, June 08, 2010 8:11 AM To: mb12 valtrex Subject: Re: New group in Florida Are you looking for a DAN doc, then? We see Dr. Berger in Tampa. Have you done any biomedical yet, besides the L-carnitine? Okay, my story is long but I'll just write the basics, she was born on time, had major feeding issues, 9 years old and still has major feeding issues - her soft spot closed early - first seizure at 3 months - developmentally delayed - Carnitine deficient at 14 months and put on L carnitine - seizures continued with abnormal EEG's, BUT normal IQ and sweet kid, tells eveyrone she loves them and hugs them, told she has autism at 2 but very social and good eye contact, speech was poor, but a loving child, she has a carbohydrate transporter disorder 271.9diagnosis by age 7 her IQ had fallen to 62 it's 58 now and she's 9. Seizures keep hitting hard. Doctor says - not autism Lennox Gastaut Syndrome - now her right leg is longer than the left, she can't run or jump or play and lays still most of the time. had the CGH microarray came back partial duplication on the short arm 16 at 11.2 Daddy has the same so it means nothing they say and then VLCAD comes back off and the lab results read 'probable mitochondrial in origins' BUT no test done to confirm that YET! In the mean time, she's sick all the time just spent a week in PICU with a prolapsed rectum and c-diff and she's still sick, we see the doctors again today. She's alway sick. She misses more school than she attends. We love her so much, she is our whole world but we're afraid we're going to lose her. We're going to pay a doctor private to look at all her tests and records and tell us what we need to do. Our insurance has referrals in for 5 months now and NO appointment YET. We're too scared to keep waiting. Anyone else have a similar story? I hope not! Christy mother to Amy 9 years old -- Toni ------ Mind like a steel trap... Rusty and illegal in 37 states. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2010 Report Share Posted June 8, 2010 I haven't been around the block so I don't have a lot of advice for you.I would probably advise you do Omega 3s or cod liver oil... these are good " brain builders " that everyone needs. Biotin, folic acid, other B vitamins are sometimes low in seizure patients. My son has had a 24 hr EEG and has constant epiliptiform activity but has only had ~4 seizures, with low grade fevers, and 1-2 absence seizures. We had been advised " you need an MRI for him, and you might want to consider anti-seizure medication. " We haven't done the MRI yet, that is coming up.There are many people on here who have had success with Dr. Goldberg in California, I think he does SPECT scans. I don't know who on the East coast does this. We’ve done nothing but wait on Amy’s doctors to send us to another doctor and so far that hasn’t happened. We’re trying to get in where we pay out of pocket to a doctor in Atlanta. No, we don’t want a DAN doctor – Amy is no longer classified as autistic and they think that diagnosis was a mistake, the neuropsychologist has done extensive testing and feels she doesn’t fit autism – BUT we thought all these years she was!! Christy " Let not your heart be troubled, " His tender words I hear. And resting on His goodness, I lose all doubt and fears. Though by the path He leadth, one step is all I see. But His eye is on the sparrow, so I know He watches me. http://www.youtube.com/watch?v=s9NALyRQjJM http://www.caringbridge.org/visit/amybac/guestbook From: mb12 valtrex [mailto:mb12 valtrex ] On Behalf Of Toni Marie Lombardo Sent: Tuesday, June 08, 2010 8:11 AM To: mb12 valtrex Subject: Re: New group in Florida Are you looking for a DAN doc, then? We see Dr. Berger in Tampa. Have you done any biomedical yet, besides the L-carnitine? Okay, my story is long but I'll just write the basics, she was born on time, had major feeding issues, 9 years old and still has major feeding issues - her soft spot closed early - first seizure at 3 months - developmentally delayed - Carnitine deficient at 14 months and put on L carnitine - seizures continued with abnormal EEG's, BUT normal IQ and sweet kid, tells eveyrone she loves them and hugs them, told she has autism at 2 but very social and good eye contact, speech was poor, but a loving child, she has a carbohydrate transporter disorder 271.9diagnosis by age 7 her IQ had fallen to 62 it's 58 now and she's 9. Seizures keep hitting hard. Doctor says - not autism Lennox Gastaut Syndrome - now her right leg is longer than the left, she can't run or jump or play and lays still most of the time. had the CGH microarray came back partial duplication on the short arm 16 at 11.2 Daddy has the same so it means nothing they say and then VLCAD comes back off and the lab results read 'probable mitochondrial in origins' BUT no test done to confirm that YET! In the mean time, she's sick all the time just spent a week in PICU with a prolapsed rectum and c-diff and she's still sick, we see the doctors again today. She's alway sick. She misses more school than she attends. We love her so much, she is our whole world but we're afraid we're going to lose her. We're going to pay a doctor private to look at all her tests and records and tell us what we need to do. Our insurance has referrals in for 5 months now and NO appointment YET. We're too scared to keep waiting. Anyone else have a similar story? I hope not! Christy mother to Amy 9 years old -- Toni ------ Mind like a steel trap... Rusty and illegal in 37 states. -- Toni------Mind like a steel trap...Rusty and illegal in 37 states. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2010 Report Share Posted June 8, 2010 sounds like between the carb absorption issue and low carnitine (meaning that would effect protiens and fats absorption) she isn't getting a whole lot she can live on (not that you are not offering but that she is able to ABSORB) have you seen a GI?n is she on enzmes speicially like pancreatic enzymes and carb ones. any carbs she would eat if she can not absorb would feed yeast and bacteria making her gut worse and start causing OTHER food intollerence and allergies which will crash her immune system often. so balencing the TH1 and TH2 at this time may be inportant somehting like LDN can help in that area. as well as treating the yeast and bacteria (you can do comprehensive stool anayalsis through dr's data to look at this, it will also look at digestion of short chain and long chain fatty acid absortion, plant and meat fibers coming through and inflammation markers and IGA which is the lining of the gut to see what is going on) you want to couple this with an OATS great plain is noted as one of the best with this one and has a free consult with it, it would look at nutritional absorbtion, and defiencey's, amino acids, essental fatty acids, yeast and bacteria and inflamation markers as well that may not culture on a stool test. those 2 keys can tell you WHAT direction is the best to focus forward on. celiac would perhaps be another thing to look at. it messes with seizers and absorption issues. is your child on a GF diet? if not I would for sure try it, actually a low carb diet as well as that may help with digestion and absorption. my son also has the carb absorption issues, no to low growth issues, and the fat and protien absorpiton issues. years of problems, addressing diet and GI made all the difference in the world, he also tested low in carnintine and doing supplimention made a big difference. honestly I have seen few people on here with ALL those absorption uptake issues. we saw BUIE *GI in boston who helped do a secretin challenge under for a upper nad lower GI. we had been on diet for years before hand so we didn't learn as much as we had years before starting. alot we had figured out through all DAN dr in Kansas, and BUIES backed alot of what we had already learned. but he confirmed the missing enzymes in our son and WHY he wasn't absorbing what he should have been. being on pancreatic enzymes and takeing toxins down and diet we have gained weight and growth more importantly that we were missing. we also ruled out things like cyctic fibrosis, and other genetic issues along the ways as he was SOOOO sick as well. we can trace all his junk back to vaccinations sadly! feel free to contact me off group if you want some help as well christelking1@... New group in Florida Okay, my story is long but I'll just write the basics, she was born on time, had major feeding issues, 9 years old and still has major feeding issues - her soft spot closed early - first seizure at 3 months - developmentally delayed - Carnitine deficient at 14 months and put on L carnitine - seizures continued with abnormal EEG's, BUT normal IQ and sweet kid, tells eveyrone she loves them and hugs them, told she has autism at 2 but very social and good eye contact, speech was poor, but a loving child, she has a carbohydrate transporter disorder 271.9diagnosis by age 7 her IQ had fallen to 62 it's 58 now and she's 9. Seizures keep hitting hard. Doctor says - not autism Lennox Gastaut Syndrome - now her right leg is longer than the left, she can't run or jump or play and lays still most of the time. had the CGH microarray came back partial duplication on the short arm 16 at 11.2 Daddy has the same so it means nothing they say and then VLCAD comes back off and the lab results read 'probable mitochondrial in origins' BUT no test done to confirm that YET! In the mean time, she's sick all the time just spent a week in PICU with a prolapsed rectum and c-diff and she's still sick, we see the doctors again today. She's alway sick. She misses more school than she attends. We love her so much, she is our whole world but we're afraid we're going to lose her. We're going to pay a doctor private to look at all her tests and records and tell us what we need to do. Our insurance has referrals in for 5 months now and NO appointment YET. We're too scared to keep waiting. Anyone else have a similar story? I hope not! Christy mother to Amy 9 years old Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2010 Report Share Posted June 8, 2010 Do you have a DAN! doc? You mentioned you were in Florida. I highly recommend Dr. Rossignol. www.icdrc.org She mentioned she is sick all the time. Have you had a immune panel done on her. IgG, IgA, IgM? Also should consider Laundau-Kleffner or a variant. Pamela From: mb12 valtrex [mailto:mb12 valtrex ] On Behalf Of Christy Sent: Tuesday, June 08, 2010 8:37 AM To: mb12 valtrex Subject: New group in Florida Okay, my story is long but I'll just write the basics, she was born on time, had major feeding issues, 9 years old and still has major feeding issues - her soft spot closed early - first seizure at 3 months - developmentally delayed - Carnitine deficient at 14 months and put on L carnitine - seizures continued with abnormal EEG's, BUT normal IQ and sweet kid, tells eveyrone she loves them and hugs them, told she has autism at 2 but very social and good eye contact, speech was poor, but a loving child, she has a carbohydrate transporter disorder 271.9diagnosis by age 7 her IQ had fallen to 62 it's 58 now and she's 9. Seizures keep hitting hard. Doctor says - not autism Lennox Gastaut Syndrome - now her right leg is longer than the left, she can't run or jump or play and lays still most of the time. had the CGH microarray came back partial duplication on the short arm 16 at 11.2 Daddy has the same so it means nothing they say and then VLCAD comes back off and the lab results read 'probable mitochondrial in origins' BUT no test done to confirm that YET! In the mean time, she's sick all the time just spent a week in PICU with a prolapsed rectum and c-diff and she's still sick, we see the doctors again today. She's alway sick. She misses more school than she attends. We love her so much, she is our whole world but we're afraid we're going to lose her. We're going to pay a doctor private to look at all her tests and records and tell us what we need to do. Our insurance has referrals in for 5 months now and NO appointment YET. We're too scared to keep waiting. Anyone else have a similar story? I hope not! Christy mother to Amy 9 years old Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2010 Report Share Posted June 8, 2010 No, we don’t want a DAN doctor – our daughter isn’t autistic J. Her problem is metabolic with possible mitochondrial. Thanks though we really don’t want a DAN doctor our insurance won’t cover that, it won’t even cover for mito testing.Thanks though. Christy " Let not your heart be troubled, " His tender words I hear. And resting on His goodness, I lose all doubt and fears. Though by the path He leadth, one step is all I see. But His eye is on the sparrow, so I know He watches me. http://www.youtube.com/watch?v=s9NALyRQjJM http://www.caringbridge.org/visit/amybac/guestbook From: mb12 valtrex [mailto:mb12 valtrex ] On Behalf Of Pamela P Sent: Tuesday, June 08, 2010 11:39 AM To: mb12 valtrex Subject: RE: New group in Florida Do you have a DAN! doc? You mentioned you were in Florida. I highly recommend Dr. Rossignol. www.icdrc.org She mentioned she is sick all the time. Have you had a immune panel done on her. IgG, IgA, IgM? Also should consider Laundau-Kleffner or a variant. Pamela From: mb12 valtrex [mailto:mb12 valtrex ] On Behalf Of Christy Sent: Tuesday, June 08, 2010 8:37 AM To: mb12 valtrex Subject: New group in Florida Okay, my story is long but I'll just write the basics, she was born on time, had major feeding issues, 9 years old and still has major feeding issues - her soft spot closed early - first seizure at 3 months - developmentally delayed - Carnitine deficient at 14 months and put on L carnitine - seizures continued with abnormal EEG's, BUT normal IQ and sweet kid, tells eveyrone she loves them and hugs them, told she has autism at 2 but very social and good eye contact, speech was poor, but a loving child, she has a carbohydrate transporter disorder 271.9diagnosis by age 7 her IQ had fallen to 62 it's 58 now and she's 9. Seizures keep hitting hard. Doctor says - not autism Lennox Gastaut Syndrome - now her right leg is longer than the left, she can't run or jump or play and lays still most of the time. had the CGH microarray came back partial duplication on the short arm 16 at 11.2 Daddy has the same so it means nothing they say and then VLCAD comes back off and the lab results read 'probable mitochondrial in origins' BUT no test done to confirm that YET! In the mean time, she's sick all the time just spent a week in PICU with a prolapsed rectum and c-diff and she's still sick, we see the doctors again today. She's alway sick. She misses more school than she attends. We love her so much, she is our whole world but we're afraid we're going to lose her. We're going to pay a doctor private to look at all her tests and records and tell us what we need to do. Our insurance has referrals in for 5 months now and NO appointment YET. We're too scared to keep waiting. Anyone else have a similar story? I hope not! Christy mother to Amy 9 years old Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2010 Report Share Posted June 8, 2010 Metabolic and Mito issues would be areas of knowledge for a reputable DAN! doctor with or without an Autism label. Pamela From: mb12 valtrex [mailto:mb12 valtrex ] On Behalf Of Girlchristian Sent: Tuesday, June 08, 2010 12:48 PM To: mb12 valtrex Subject: RE: New group in Florida No, we don’t want a DAN doctor – our daughter isn’t autistic J. Her problem is metabolic with possible mitochondrial. Thanks though we really don’t want a DAN doctor our insurance won’t cover that, it won’t even cover for mito testing.Thanks though. Christy " Let not your heart be troubled, " His tender words I hear. And resting on His goodness, I lose all doubt and fears. Though by the path He leadth, one step is all I see. But His eye is on the sparrow, so I know He watches me. http://www.youtube.com/watch?v=s9NALyRQjJM http://www.caringbridge.org/visit/amybac/guestbook From: mb12 valtrex [mailto:mb12 valtrex ] On Behalf Of Pamela P Sent: Tuesday, June 08, 2010 11:39 AM To: mb12 valtrex Subject: RE: New group in Florida Do you have a DAN! doc? You mentioned you were in Florida. I highly recommend Dr. Rossignol. www.icdrc.org She mentioned she is sick all the time. Have you had a immune panel done on her. IgG, IgA, IgM? Also should consider Laundau-Kleffner or a variant. Pamela From: mb12 valtrex [mailto:mb12 valtrex ] On Behalf Of Christy Sent: Tuesday, June 08, 2010 8:37 AM To: mb12 valtrex Subject: New group in Florida Okay, my story is long but I'll just write the basics, she was born on time, had major feeding issues, 9 years old and still has major feeding issues - her soft spot closed early - first seizure at 3 months - developmentally delayed - Carnitine deficient at 14 months and put on L carnitine - seizures continued with abnormal EEG's, BUT normal IQ and sweet kid, tells eveyrone she loves them and hugs them, told she has autism at 2 but very social and good eye contact, speech was poor, but a loving child, she has a carbohydrate transporter disorder 271.9diagnosis by age 7 her IQ had fallen to 62 it's 58 now and she's 9. Seizures keep hitting hard. Doctor says - not autism Lennox Gastaut Syndrome - now her right leg is longer than the left, she can't run or jump or play and lays still most of the time. had the CGH microarray came back partial duplication on the short arm 16 at 11.2 Daddy has the same so it means nothing they say and then VLCAD comes back off and the lab results read 'probable mitochondrial in origins' BUT no test done to confirm that YET! In the mean time, she's sick all the time just spent a week in PICU with a prolapsed rectum and c-diff and she's still sick, we see the doctors again today. She's alway sick. She misses more school than she attends. We love her so much, she is our whole world but we're afraid we're going to lose her. We're going to pay a doctor private to look at all her tests and records and tell us what we need to do. Our insurance has referrals in for 5 months now and NO appointment YET. We're too scared to keep waiting. Anyone else have a similar story? I hope not! Christy mother to Amy 9 years old Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2010 Report Share Posted June 8, 2010 I agree. Our DAN is a regular MD pediatrician. He just specializes in ADHD, Autism and dietary intervention. If you think it is metabolic and willing to pay out of pocket, I suppose you could look into Yasko? Metabolic and Mito issues would be areas of knowledge for a reputable DAN! doctor with or without an Autism label. Pamela -- Toni------Mind like a steel trap...Rusty and illegal in 37 states. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2010 Report Share Posted June 8, 2010 DAN just means they look at things differently and approach medicine differently. they are looking at symptoms and what they point to as going wrong. and then treat to those system to restore long term health.... OUR DANs have all be speialist in other things, LYME, ALlergies and nutriton RE: New group in Florida No, we don’t want a DAN doctor – our daughter isn’t autistic J. Her problem is metabolic with possible mitochondrial. Thanks though we really don’t want a DAN doctor our insurance won’t cover that, it won’t even cover for mito testing.Thanks though. Christy "Let not your heart be troubled," His tender words I hear. And resting on His goodness, I lose all doubt and fears. Though by the path He leadth, one step is all I see. But His eye is on the sparrow, so I know He watches me. http://www.youtube.com/watch?v=s9NALyRQjJM http://www.caringbridge.org/visit/amybac/guestbook From: mb12 valtrex [mailto:mb12 valtrex ] On Behalf Of Pamela PSent: Tuesday, June 08, 2010 11:39 AMTo: mb12 valtrex Subject: RE: New group in Florida Do you have a DAN! doc? You mentioned you were in Florida. I highly recommend Dr. Rossignol. www.icdrc.org She mentioned she is sick all the time. Have you had a immune panel done on her. IgG, IgA, IgM? Also should consider Laundau-Kleffner or a variant. Pamela From: mb12 valtrex [mailto:mb12 valtrex ] On Behalf Of ChristySent: Tuesday, June 08, 2010 8:37 AMTo: mb12 valtrex Subject: New group in Florida Okay, my story is long but I'll just write the basics, she was born on time, had major feeding issues, 9 years old and still has major feeding issues - her soft spot closed early - first seizure at 3 months - developmentally delayed - Carnitine deficient at 14 months and put on L carnitine - seizures continued with abnormal EEG's, BUT normal IQ and sweet kid, tells eveyrone she loves them and hugs them, told she has autism at 2 but very social and good eye contact, speech was poor, but a loving child, she has a carbohydrate transporter disorder 271.9diagnosis by age 7 her IQ had fallen to 62 it's 58 now and she's 9. Seizures keep hitting hard. Doctor says - not autism Lennox Gastaut Syndrome - now her right leg is longer than the left, she can't run or jump or play and lays still most of the time. had the CGH microarray came back partial duplication on the short arm 16 at 11.2 Daddy has the same so it means nothing they say and then VLCAD comes back off and the lab results read 'probable mitochondrial in origins' BUT no test done to confirm that YET! In the mean time, she's sick all the time just spent a week in PICU with a prolapsed rectum and c-diff and she's still sick, we see the doctors again today. She's alway sick. She misses more school than she attends. We love her so much, she is our whole world but we're afraid we're going to lose her. We're going to pay a doctor private to look at all her tests and records and tell us what we need to do. Our insurance has referrals in for 5 months now and NO appointment YET. We're too scared to keep waiting. Anyone else have a similar story? I hope not! Christy mother to Amy 9 years old Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2010 Report Share Posted June 8, 2010 i was thinking the same thing with laundau- kleffner RE: New group in Florida Do you have a DAN! doc? You mentioned you were in Florida. I highly recommend Dr. Rossignol. www.icdrc.org She mentioned she is sick all the time. Have you had a immune panel done on her. IgG, IgA, IgM? Also should consider Laundau-Kleffner or a variant. Pamela From: mb12 valtrex [mailto:mb12 valtrex ] On Behalf Of ChristySent: Tuesday, June 08, 2010 8:37 AMTo: mb12 valtrex Subject: New group in Florida Okay, my story is long but I'll just write the basics, she was born on time, had major feeding issues, 9 years old and still has major feeding issues - her soft spot closed early - first seizure at 3 months - developmentally delayed - Carnitine deficient at 14 months and put on L carnitine - seizures continued with abnormal EEG's, BUT normal IQ and sweet kid, tells eveyrone she loves them and hugs them, told she has autism at 2 but very social and good eye contact, speech was poor, but a loving child, she has a carbohydrate transporter disorder 271.9diagnosis by age 7 her IQ had fallen to 62 it's 58 now and she's 9. Seizures keep hitting hard. Doctor says - not autism Lennox Gastaut Syndrome - now her right leg is longer than the left, she can't run or jump or play and lays still most of the time. had the CGH microarray came back partial duplication on the short arm 16 at 11.2 Daddy has the same so it means nothing they say and then VLCAD comes back off and the lab results read 'probable mitochondrial in origins' BUT no test done to confirm that YET! In the mean time, she's sick all the time just spent a week in PICU with a prolapsed rectum and c-diff and she's still sick, we see the doctors again today. She's alway sick. She misses more school than she attends. We love her so much, she is our whole world but we're afraid we're going to lose her. We're going to pay a doctor private to look at all her tests and records and tell us what we need to do. Our insurance has referrals in for 5 months now and NO appointment YET. We're too scared to keep waiting. Anyone else have a similar story? I hope not! Christy mother to Amy 9 years old Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2010 Report Share Posted June 8, 2010 My daughter has a true mito disease (oxphos). Finding a Dan doc , Dr Dan Rossignol, Dr VanDyke, and Dr Usman have ALL been way better than any mito specialist we have Ever been to. Yes I've paid out of pocket but my child is on the road to recovery because of it!!!!KristiSent from my Verizon Wireless BlackBerryDate: Tue, 8 Jun 2010 13:36:02 -0400To: <mb12 valtrex >Subject: Re: New group in Florida I agree. Our DAN is a regular MD pediatrician. He just specializes in ADHD, Autism and dietary intervention. If you think it is metabolic and willing to pay out of pocket, I suppose you could look into Yasko?On Tue, Jun 8, 2010 at 1:12 PM, Pamela P <pamelaleigh99verizon (DOT) net> wrote: Metabolic and Mito issues would be areas of knowledge for areputable DAN! doctor with or without an Autism label. Pamela -- Toni------Mind like a steel trap...Rusty and illegal in 37 states. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2010 Report Share Posted June 8, 2010 Amy has Lennox Gastaut syndrome – of that we’re certain do to the findings on all her EEG’s…We’re going to be seeing Dr. Kendall in Atlanta. I was hoping someone could help with the carbohydrate transporter disorder in explaining that and in the carnitine and in her decline in health in the past two years. Christy " Let not your heart be troubled, " His tender words I hear. And resting on His goodness, I lose all doubt and fears. Though by the path He leadth, one step is all I see. But His eye is on the sparrow, so I know He watches me. http://www.youtube.com/watch?v=s9NALyRQjJM http://www.caringbridge.org/visit/amybac/guestbook From: mb12 valtrex [mailto:mb12 valtrex ] On Behalf Of Christel King Sent: Tuesday, June 08, 2010 12:58 PM To: mb12 valtrex Subject: Re: New group in Florida i was thinking the same thing with laundau- kleffner ----- Original Message ----- From: Pamela P To: mb12 valtrex Sent: Tuesday, June 08, 2010 12:38 PM Subject: RE: New group in Florida Do you have a DAN! doc? You mentioned you were in Florida. I highly recommend Dr. Rossignol. www.icdrc.org She mentioned she is sick all the time. Have you had a immune panel done on her. IgG, IgA, IgM? Also should consider Laundau-Kleffner or a variant. Pamela From: mb12 valtrex [mailto:mb12 valtrex ] On Behalf Of Christy Sent: Tuesday, June 08, 2010 8:37 AM To: mb12 valtrex Subject: New group in Florida Okay, my story is long but I'll just write the basics, she was born on time, had major feeding issues, 9 years old and still has major feeding issues - her soft spot closed early - first seizure at 3 months - developmentally delayed - Carnitine deficient at 14 months and put on L carnitine - seizures continued with abnormal EEG's, BUT normal IQ and sweet kid, tells eveyrone she loves them and hugs them, told she has autism at 2 but very social and good eye contact, speech was poor, but a loving child, she has a carbohydrate transporter disorder 271.9diagnosis by age 7 her IQ had fallen to 62 it's 58 now and she's 9. Seizures keep hitting hard. Doctor says - not autism Lennox Gastaut Syndrome - now her right leg is longer than the left, she can't run or jump or play and lays still most of the time. had the CGH microarray came back partial duplication on the short arm 16 at 11.2 Daddy has the same so it means nothing they say and then VLCAD comes back off and the lab results read 'probable mitochondrial in origins' BUT no test done to confirm that YET! In the mean time, she's sick all the time just spent a week in PICU with a prolapsed rectum and c-diff and she's still sick, we see the doctors again today. She's alway sick. She misses more school than she attends. We love her so much, she is our whole world but we're afraid we're going to lose her. We're going to pay a doctor private to look at all her tests and records and tell us what we need to do. Our insurance has referrals in for 5 months now and NO appointment YET. We're too scared to keep waiting. Anyone else have a similar story? I hope not! Christy mother to Amy 9 years old Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2010 Report Share Posted June 8, 2010 I guess I should have explained better – we know Amy has Lennox Gastaut syndrome – what we don’t understand is how her carnitine deficiency plays into her medical health issues and the carbohydrate transporter disorder. Christy " Let not your heart be troubled, " His tender words I hear. And resting on His goodness, I lose all doubt and fears. Though by the path He leadth, one step is all I see. But His eye is on the sparrow, so I know He watches me. http://www.youtube.com/watch?v=s9NALyRQjJM http://www.caringbridge.org/visit/amybac/guestbook From: mb12 valtrex [mailto:mb12 valtrex ] On Behalf Of Christel King Sent: Tuesday, June 08, 2010 12:44 PM To: mb12 valtrex Subject: Re: New group in Florida DAN just means they look at things differently and approach medicine differently. they are looking at symptoms and what they point to as going wrong. and then treat to those system to restore long term health.... OUR DANs have all be speialist in other things, LYME, ALlergies and nutriton ----- Original Message ----- From: Girlchristian To: mb12 valtrex Sent: Tuesday, June 08, 2010 12:48 PM Subject: RE: New group in Florida No, we don’t want a DAN doctor – our daughter isn’t autistic J. Her problem is metabolic with possible mitochondrial. Thanks though we really don’t want a DAN doctor our insurance won’t cover that, it won’t even cover for mito testing.Thanks though. Christy " Let not your heart be troubled, " His tender words I hear. And resting on His goodness, I lose all doubt and fears. Though by the path He leadth, one step is all I see. But His eye is on the sparrow, so I know He watches me. http://www.youtube.com/watch?v=s9NALyRQjJM http://www.caringbridge.org/visit/amybac/guestbook From: mb12 valtrex [mailto:mb12 valtrex ] On Behalf Of Pamela P Sent: Tuesday, June 08, 2010 11:39 AM To: mb12 valtrex Subject: RE: New group in Florida Do you have a DAN! doc? You mentioned you were in Florida. I highly recommend Dr. Rossignol. www.icdrc.org She mentioned she is sick all the time. Have you had a immune panel done on her. IgG, IgA, IgM? Also should consider Laundau-Kleffner or a variant. Pamela From: mb12 valtrex [mailto:mb12 valtrex ] On Behalf Of Christy Sent: Tuesday, June 08, 2010 8:37 AM To: mb12 valtrex Subject: New group in Florida Okay, my story is long but I'll just write the basics, she was born on time, had major feeding issues, 9 years old and still has major feeding issues - her soft spot closed early - first seizure at 3 months - developmentally delayed - Carnitine deficient at 14 months and put on L carnitine - seizures continued with abnormal EEG's, BUT normal IQ and sweet kid, tells eveyrone she loves them and hugs them, told she has autism at 2 but very social and good eye contact, speech was poor, but a loving child, she has a carbohydrate transporter disorder 271.9diagnosis by age 7 her IQ had fallen to 62 it's 58 now and she's 9. Seizures keep hitting hard. Doctor says - not autism Lennox Gastaut Syndrome - now her right leg is longer than the left, she can't run or jump or play and lays still most of the time. had the CGH microarray came back partial duplication on the short arm 16 at 11.2 Daddy has the same so it means nothing they say and then VLCAD comes back off and the lab results read 'probable mitochondrial in origins' BUT no test done to confirm that YET! In the mean time, she's sick all the time just spent a week in PICU with a prolapsed rectum and c-diff and she's still sick, we see the doctors again today. She's alway sick. She misses more school than she attends. We love her so much, she is our whole world but we're afraid we're going to lose her. We're going to pay a doctor private to look at all her tests and records and tell us what we need to do. Our insurance has referrals in for 5 months now and NO appointment YET. We're too scared to keep waiting. Anyone else have a similar story? I hope not! Christy mother to Amy 9 years old Quote Link to comment Share on other sites More sharing options...
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