Guest guest Posted April 24, 2006 Report Share Posted April 24, 2006 Genetic tests are done when a child or adult has fevers of unknown origin along with other symptoms... some of those other symptoms are abdomen pain, hives, joint pain or swelling, canker sores, lab data such as high sed rate or crp, elevated WBCs etc.... some of these or all.... the docs need to get a " clinical " picture to determine if genetic studies should be done. ID or rheumie or infectious dis docs can order the tests and get done if your insurance company allows. NIH has the most cumulative experience with all the fever disorders so I tend to recommend parents to go there. We continue to find specialists and pediatricians with little or no knowledge of the different disorders because some are so so rare. Prednisone works with and it also works with TRAPS and HIDs.... so it is NOT true that if it works your child has . Not sure what it means for ...(not working Prednisone and helpful Cimetidine) ... but Cimetidine does have an auto-immune regulatory effect... so something is regulating!! Indocin is an NSAID so yes for inflammation. Tagamet is NOT. It works as an auto-immune regulator.... Unknown etiology! Not sure why neg SED rate. Was sed rate checked during or after fever?? ANA positive.... does NOT always mean something. Also depends on the level of abnormality... and in conjunction with other tests..... people have positive ANA and walk around with no problems. Again... it is the WHOLE picture.... physical and clinical. Not sure if I am helping!! Fran Fran A Bulone Mom to ph 6 yrs old Waxhaw, NC Owner & Moderator Group Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2006 Report Share Posted April 24, 2006 yes, this gives me more to think and ask about. Thank you Fran, Gretchen Fran Bulone <fbulone@...> wrote: Genetic tests are done when a child or adult has fevers of unknown origin along with other symptoms... some of those other symptoms are abdomen pain, hives, joint pain or swelling, canker sores, lab data such as high sed rate or crp, elevated WBCs etc.... some of these or all.... the docs need to get a " clinical " picture to determine if genetic studies should be done. ID or rheumie or infectious dis docs can order the tests and get done if your insurance company allows. NIH has the most cumulative experience with all the fever disorders so I tend to recommend parents to go there. We continue to find specialists and pediatricians with little or no knowledge of the different disorders because some are so so rare. Prednisone works with and it also works with TRAPS and HIDs.... so it is NOT true that if it works your child has . Not sure what it means for ...(not working Prednisone and helpful Cimetidine) ... but Cimetidine does have an auto-immune regulatory effect... so something is regulating!! Indocin is an NSAID so yes for inflammation. Tagamet is NOT. It works as an auto-immune regulator.... Unknown etiology! Not sure why neg SED rate. Was sed rate checked during or after fever?? ANA positive.... does NOT always mean something. Also depends on the level of abnormality... and in conjunction with other tests..... people have positive ANA and walk around with no problems. Again... it is the WHOLE picture.... physical and clinical. Not sure if I am helping!! Fran Fran A Bulone Mom to ph 6 yrs old Waxhaw, NC Owner & Moderator Group Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2006 Report Share Posted June 7, 2006 Ummm did it again not sure why oh well will sort it out tomorrow Cheers Jaxx (New Zealand) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2006 Report Share Posted June 8, 2006 got your test Stef Texas TESTING Just a test, my account was bouncing Di Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 26, 2006 Report Share Posted July 26, 2006 If one has had all those ****viruses, in active form, in the past, but has taken Transfer Factor, which seemed to be effective for the flu-like symptoms, by eradicating those symptoms, would Dr. Lerner's use of Antiviral medication be effective for that said person on helping the Cardiac situation? Thank you, Amelia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 26, 2006 Report Share Posted July 26, 2006 Hi, Edy. Generally speaking, high IgM titers indicate that an infection is recent or ongoing, while elevated IgG titers by themselves indicate that there was exposure in the past. So getting both IgG and IgM titers for the viruses would be a good idea. If you want to check for viral cardiomyopathy of the type that Dr. Lerner has found in CFS, then it's important to get the full set of antibody tests for Epstein-- Barr, including the nuclear antibody, the viral coat antigen, and the others, as well as the ones available for CMV. Rich > > Hi folks, > > I'm seeing my doc next week and want to order some tests. Years ago I > did one through Immunosciences for antibodies to a ton of stuff and > the ones that stood out were EBV, HHV-6 IgG, HHV-6IgM, 1 herpes virus > IgG and cytomegalovirus IgG. The antibody number were pretty high, > but I wonder if that means I had an active infection or that just the > antibodies were left. What would I ask for now as far as testing to > see if these infections are active or not? Thanks, I think I may be > asking Rich or possibly Blake? > Edy > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 26, 2006 Report Share Posted July 26, 2006 Thanks Rich, Will print this out and take to my doc. rvankonynen <richvank@...> wrote: Hi, Edy. Generally speaking, high IgM titers indicate that an infection is recent or ongoing, while elevated IgG titers by themselves indicate that there was exposure in the past. So getting both IgG and IgM titers for the viruses would be a good idea. If you want to check for viral cardiomyopathy of the type that Dr. Lerner has found in CFS, then it's important to get the full set of antibody tests for Epstein-- Barr, including the nuclear antibody, the viral coat antigen, and the others, as well as the ones available for CMV. Rich > > Hi folks, > > I'm seeing my doc next week and want to order some tests. Years ago I > did one through Immunosciences for antibodies to a ton of stuff and > the ones that stood out were EBV, HHV-6 IgG, HHV-6IgM, 1 herpes virus > IgG and cytomegalovirus IgG. The antibody number were pretty high, > but I wonder if that means I had an active infection or that just the > antibodies were left. What would I ask for now as far as testing to > see if these infections are active or not? Thanks, I think I may be > asking Rich or possibly Blake? > Edy > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2006 Report Share Posted November 12, 2006 -- testing Still not on Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2007 Report Share Posted January 19, 2007 I remember watching them test Noah one time. They were having him point to things on a page like. " shoe " " hat " etc. When they got to " gift " he just sat there so I said " present " and he pointed to the right one. they said it didn't count. That's when I told them their test was stupid and didn't mean a thing to me. That is the exact same situation that happened to . She called the " gift " a " present " , and was counted wrong. That is what started my looking into testing, and prompted the long conversations with a wonderful school psychologist. Sharon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2007 Report Share Posted January 19, 2007 The example I recall from 's IQ test was that she was asked " what day were you born? " which she could not answer. The school psych said she so much wanted to rephrase the question, but the rules didn't allow it, so didn't get credit for that one. Of course, after the test, the school psych (who did a fabulous job in getting the most out of during her assesments last year) said " what is your birthday " and of course, replied " January 16th! " That is part of the problem with these tests is that those administering them cannot modify questions, and sometimes it would be as simple as changing a single word. , mom to (11), (9 DS), and Sammy (7) Sharon wrote: > I remember watching them test Noah one time. They were having him point > to > things on a page like. " shoe " " hat " etc. When they got to " gift " he > just > > sat there so I said " present " and he pointed to the right one. they > said > it > didn't count. That's when I told them their test was stupid and didn't > mean > a thing to me. > > That is the exact same situation that happened to . She called > the " gift " a " present " , and was counted wrong. That is what started > my looking into testing, and prompted the long conversations with a > wonderful school psychologist. > > Sharon > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2007 Report Share Posted January 19, 2007 The example I recall from 's IQ test was that she was asked " what day were you born? " which she could not answer. The school psych said she so much wanted to rephrase the question, but the rules didn't allow it, so didn't get credit for that one. Of course, after the test, the school psych (who did a fabulous job in getting the most out of during her assesments last year) said " what is your birthday " and of course, replied " January 16th! " That is part of the problem with these tests is that those administering them cannot modify questions, and sometimes it would be as simple as changing a single word. , mom to (11), (9 DS), and Sammy (7) Sharon wrote: > I remember watching them test Noah one time. They were having him point > to > things on a page like. " shoe " " hat " etc. When they got to " gift " he > just > > sat there so I said " present " and he pointed to the right one. they > said > it > didn't count. That's when I told them their test was stupid and didn't > mean > a thing to me. > > That is the exact same situation that happened to . She called > the " gift " a " present " , and was counted wrong. That is what started > my looking into testing, and prompted the long conversations with a > wonderful school psychologist. > > Sharon > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2007 Report Share Posted January 19, 2007 Good example of why these tests are often misleading. Children respond with what they know from their experience, not the " accepted " response. When my oldest (nda) was in preschool, her teacher pulled me aside to ask about her response to a question on the K readiness test-the only one she got " wrong. " She was supposed to put a set of cards in the right sequence to show the eating of an ice cream cone, but she put the empty cone FIRST instead of third (full, half eaten ice cream, empty cone, cone almost all gone). The teacher was a little confused that she would do that, but it made perfect sense to me. This was when we only had 2 kids, but that was enough that they needed something to keep them occupied when I filled ice cream cones-so, I always started the process by giving them each an empty cone to hold then had the one waiting continue to hold the empty while I was filling for the other's cone. So, it wasn't the wrong answer, just a different answer based on different experience. Whether it's a verbal or non-verbal test, some language (which is always open to misinterpretation) is probably going to get used. The tests don't account for differently experienced children (especially younger ones) and don't allow sufficient time for them to process and form a response, an accommodation many children with learning issues (not just ds) need as an accommodation. The best way to look at the results is that they give a floor of the child's abilities, but the abilities are probably higher than the results would indicate. That's why much of the research cautions against trying to predict future outcomes based on such tests. Unfortunately, that's what many educators/ professionals do, and THAT'S one of the main reasons why most parents don't like the tests. There can be some value to the tests if they are not so abused. Qualifying for services is one. Determining if cognitive skills are better in some areas is another, along with finding the areas of need. Comparing the cognitive ability score with achievement and with, say, language scores, is another still. The " wonderful " professionals will be mining for information from the test about what the child can do beyond just the score. That information can be a great help in determining needs and services. Judi _____ From: [mailto: ] On Behalf Of Sharon Sent: Friday, January 19, 2007 10:26 PM Subject: re: testing I remember watching them test Noah one time. They were having him point to things on a page like. " shoe " " hat " etc. When they got to " gift " he just sat there so I said " present " and he pointed to the right one. they said it didn't count. That's when I told them their test was stupid and didn't mean a thing to me. That is the exact same situation that happened to . She called the " gift " a " present " , and was counted wrong. That is what started my looking into testing, and prompted the long conversations with a wonderful school psychologist. Sharon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2007 Report Share Posted January 19, 2007 Good example of why these tests are often misleading. Children respond with what they know from their experience, not the " accepted " response. When my oldest (nda) was in preschool, her teacher pulled me aside to ask about her response to a question on the K readiness test-the only one she got " wrong. " She was supposed to put a set of cards in the right sequence to show the eating of an ice cream cone, but she put the empty cone FIRST instead of third (full, half eaten ice cream, empty cone, cone almost all gone). The teacher was a little confused that she would do that, but it made perfect sense to me. This was when we only had 2 kids, but that was enough that they needed something to keep them occupied when I filled ice cream cones-so, I always started the process by giving them each an empty cone to hold then had the one waiting continue to hold the empty while I was filling for the other's cone. So, it wasn't the wrong answer, just a different answer based on different experience. Whether it's a verbal or non-verbal test, some language (which is always open to misinterpretation) is probably going to get used. The tests don't account for differently experienced children (especially younger ones) and don't allow sufficient time for them to process and form a response, an accommodation many children with learning issues (not just ds) need as an accommodation. The best way to look at the results is that they give a floor of the child's abilities, but the abilities are probably higher than the results would indicate. That's why much of the research cautions against trying to predict future outcomes based on such tests. Unfortunately, that's what many educators/ professionals do, and THAT'S one of the main reasons why most parents don't like the tests. There can be some value to the tests if they are not so abused. Qualifying for services is one. Determining if cognitive skills are better in some areas is another, along with finding the areas of need. Comparing the cognitive ability score with achievement and with, say, language scores, is another still. The " wonderful " professionals will be mining for information from the test about what the child can do beyond just the score. That information can be a great help in determining needs and services. Judi _____ From: [mailto: ] On Behalf Of Sharon Sent: Friday, January 19, 2007 10:26 PM Subject: re: testing I remember watching them test Noah one time. They were having him point to things on a page like. " shoe " " hat " etc. When they got to " gift " he just sat there so I said " present " and he pointed to the right one. they said it didn't count. That's when I told them their test was stupid and didn't mean a thing to me. That is the exact same situation that happened to . She called the " gift " a " present " , and was counted wrong. That is what started my looking into testing, and prompted the long conversations with a wonderful school psychologist. Sharon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2007 Report Share Posted January 20, 2007 In a message dated 1/19/2007 10:32:25 PM Eastern Standard Time, huie@... writes: That is the exact same situation that happened to . It also happened with Micah and his Speech therapist said she thought it was ridiculous as well but that they had to count it wrong. that's when I knew that testing our kids for the most part is a crock!! Loree Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2007 Report Share Posted February 4, 2007 Medically there is not anything wrong with him...all tests are normal and dr.'s have no clue. Life with my son is hell...I love him so much but this life is not human anymore...not for him and not for me. Please guide me... Oh,Mandy, I'm so sorry to hear that things are so hard for you and your son. Please know that you aren't alone, so many others have been right where you are and seen the quality of their child's life improve dramatically. Please hang in there, honey, it will get better, you won't find a miracle overnight cure but things will get better for your son and for you. It may take time for you to find the things that really help your son so prepare yourself for the long haul and please, ask for help when you don't know what to do or just send an SOS out to the group, there's probably someone whose shoulder you can cry on when you feel like giving up. It's so hard when you first start because, of course, you have new hope in the biomedical interventions and we want to see progress straight away because we are tired of watching our kids suffer - just give it some time and take it small steps and keep notes of your son and his behaviour. My thoughts are with you and your son, believe me, I know those long lonely nights of trying to just get by and pass the hours, it's so deeply painful, more painful than anything. Thinking of you and your son tonight, Take care, Darla Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2007 Report Share Posted February 4, 2007 Mandy my son just screamed and head banged for yrs, and I mean yrs. We were just surviving no quality of life at all, he got so sick from constant diahrea, he was and is non verbal, so no way of telling us other than screaming and self injury. He would fall asleep through exhaustion and wake with the pain. The biggest impact for him was enzymes, with everything that crossed his mouth. He is now a healthy and pain free child, I believe the gut is the key issue for our kids. Dietary restrictions were just not enough for him, he seemed to be unable to digest anything at all. Using the enzymes and watching out for any intolerances cracked the problem for us, his diet is a mixture of CF/SCD and enzymes, it's specific for him in that he can have small amounts of cassein and some carbs and low sugar so long as enzymes are used, he eats very well these days and is happy. Sometimes it's worth going right back to basics and taking a note of everything. Vicky Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2007 Report Share Posted February 4, 2007 Hi Mandy My heart and thaughts are with you and I am crying as I dont know where to start as I know when their is no sleep at night and you dont know if it will ever gets better but you know what it will when my son was doing that I would play music he showed likness to take him for walks all hours of the night but your son wont go out give lots of water less juice and if you give juice water it down keep incouraging him to use the toilet even after hes wet himself still take him to the toilet he will get there do you get help from social services Love you my sister and wish you will sleep tonight as your son will sleep tonight [ SMILES] Mandy wrote: Please I need some advise... I had my son tested...finally...by a biomed dr. He had stool and urine and blood tests. His stool and urine and blood did not show anti-bodies for gluten or casien. It did show some bad bacterias for which he will be getting probiotica. No insufficiency for vitamins...it only showed he had a big inflammation and they did found mercury, aluminium and lead. My son is 4.10 years old. Had severe seizures for 2,5 years. Is now seizure free but with slight abnormal EEG, he is non-verbal, not potty trained and does not play. He just cries all day (and I really mean cry and cry and cry). He is obsessed with balls and vacume cleaners and screems hell if we want to take him any where. Basically I sit in the house all day long waiting for the night and during the night he does not sleep thouhg the night and wakes up several times. My son was fine and normal and so sweet until 4 months, until his 3rd shot of DKTP/HIB. I just started him on the GF/CF diet with all supplements (Omega, vitamine E, b1, b6, b12, C, selenium, zinc, glutamine, carnosine, magnesium, calcium). We are doing this for 2 weeks now...no change. Medically there is not anything wrong with him...all tests are normal and dr.'s have no clue. Life with my son is hell...I love him so much but this life is not human anymore...not for him and not for me. Please guide me... Mandy New is the ultimate force in competitive emailing. Find out more at the Championships. Plus: play games and win prizes. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2007 Report Share Posted February 4, 2007 Mandy, Whereabouts are you? I thought it might be worth mentioning to us in case one of us lives near you. it sounds as though your son is in a bad way and your life sounds impossible. Are you going to the conference? If so you’ll meet us and get tons of support. Here’s my phone number, I am not sure I have any answers for you but sometimes it helps just to talk to someone else. 01752 265085 My son’s not had seizures and I have no experience there but a bit of experience with some of the other stuff you mention. Have you considered ABA/VB? That would help with some of the stuff for sure. You can ask me about that. Sara x Testing Please I need some advise... I had my son tested...finally...by a biomed dr. He had stool and urine and blood tests. His stool and urine and blood did not show anti-bodies for gluten or casien. It did show some bad bacterias for which he will be getting probiotica. No insufficiency for vitamins...it only showed he had a big inflammation and they did found mercury, aluminium and lead. My son is 4.10 years old. Had severe seizures for 2,5 years. Is now seizure free but with slight abnormal EEG, he is non-verbal, not potty trained and does not play. He just cries all day (and I really mean cry and cry and cry). He is obsessed with balls and vacume cleaners and screems hell if we want to take him any where. Basically I sit in the house all day long waiting for the night and during the night he does not sleep thouhg the night and wakes up several times. My son was fine and normal and so sweet until 4 months, until his 3rd shot of DKTP/HIB. I just started him on the GF/CF diet with all supplements (Omega, vitamine E, b1, b6, b12, C, selenium, zinc, glutamine, carnosine, magnesium, calcium). We are doing this for 2 weeks now...no change. Medically there is not anything wrong with him...all tests are normal and dr.'s have no clue. Life with my son is hell...I love him so much but this life is not human anymore...not for him and not for me. Please guide me... Mandy -- No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.5.432 / Virus Database: 268.17.19/663 - Release Date: 01/02/2007 14:28 -- No virus found in this outgoing message. Checked by AVG Free Edition. Version: 7.5.432 / Virus Database: 268.17.19/663 - Release Date: 01/02/2007 14:28 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2007 Report Share Posted February 4, 2007 Hi Mandy, My heart goes out to you and your son. Do you think that he could be crying because he is any pain? I realise that it might be hard to tell. Anyway I don’t know if you have the book Autism- effective biomedical treatments. There is a section in the book written by Judy Gorman whose son was not progressing as she would have hoped on DAN programme. Anyway she found the Specific Carbohydrate Diet and has never looked back. We too are on SCD and have found too that it was a great intervention for . It might be worth reading this section to see if it would be beneficial. e-mail me offline if you need more information. Elaine From: Autism Treatment [mailto:Autism Treatment ] On Behalf Of Mandy Sent: 04 February 2007 19:03 Autism Treatment Subject: Testing Please I need some advise... I had my son tested...finally...by a biomed dr. He had stool and urine and blood tests. His stool and urine and blood did not show anti-bodies for gluten or casien. It did show some bad bacterias for which he will be getting probiotica. No insufficiency for vitamins...it only showed he had a big inflammation and they did found mercury, aluminium and lead. My son is 4.10 years old. Had severe seizures for 2,5 years. Is now seizure free but with slight abnormal EEG, he is non-verbal, not potty trained and does not play. He just cries all day (and I really mean cry and cry and cry). He is obsessed with balls and vacume cleaners and screems hell if we want to take him any where. Basically I sit in the house all day long waiting for the night and during the night he does not sleep thouhg the night and wakes up several times. My son was fine and normal and so sweet until 4 months, until his 3rd shot of DKTP/HIB. I just started him on the GF/CF diet with all supplements (Omega, vitamine E, b1, b6, b12, C, selenium, zinc, glutamine, carnosine, magnesium, calcium). We are doing this for 2 weeks now...no change. Medically there is not anything wrong with him...all tests are normal and dr.'s have no clue. Life with my son is hell...I love him so much but this life is not human anymore...not for him and not for me. Please guide me... Mandy -- No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.5.432 / Virus Database: 268.17.24/668 - Release Date: 04/02/2007 01:30 -- No virus found in this outgoing message. Checked by AVG Free Edition. Version: 7.5.432 / Virus Database: 268.17.24/668 - Release Date: 04/02/2007 01:30 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2007 Report Share Posted February 4, 2007 Mandy, your post is very up setting to read, you have found good people on this site tho, not everything works for every one and when you are in the the 'thick of the woods' caring as much as you can (with the energy you have left) about your son, it is hard to see a way out, but help is here, I promise you. Thinking of you Lara x Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2007 Report Share Posted February 4, 2007 Hi Mandy I am sure many parents on the list have been in the same situation.. wondering if there is a way through this. You can get through this.. he will improve and one day you will all get a good nights sleep. Best place to start is the gut. Most kids have loaded or impacted bowels. Whats his poos like . If it was me I would think about getting some oxypowder from Mandi www.mandimart.com If doing the diet also remove corn (maize) and soya.. If you want help with diet info email me joanne @ burkehouse . wanadoo . co. uk (no spaces in address) Hopefully your practitioner will guide you through the maze. Diet / Oxypowder / Treat Gut first. Joanne > > Please I need some advise... > > I had my son tested...finally...by a biomed dr. > He had stool and urine and blood tests. His stool and urine and blood did not show anti-bodies for gluten or casien. It did show some bad bacterias for which he will be getting probiotica. No insufficiency for vitamins...it only showed he had a big inflammation and they did found mercury, aluminium and lead. > > My son is 4.10 years old. Had severe seizures for 2,5 years. Is now seizure free but with slight abnormal EEG, he is non-verbal, not potty trained and does not play. He just cries all day (and I really mean cry and cry and cry). He is obsessed with balls and vacume cleaners and screems hell if we want to take him any where. Basically I sit in the house all day long waiting for the night and during the night he does not sleep thouhg the night and wakes up several times. > > My son was fine and normal and so sweet until 4 months, until his 3rd shot of DKTP/HIB. > > I just started him on the GF/CF diet with all supplements (Omega, vitamine E, b1, b6, b12, C, selenium, zinc, glutamine, carnosine, magnesium, calcium). We are doing this for 2 weeks now...no change. > > Medically there is not anything wrong with him...all tests are normal and dr.'s have no clue. > > Life with my son is hell...I love him so much but this life is not human anymore...not for him and not for me. > > Please guide me... > > Mandy > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2007 Report Share Posted February 4, 2007 Mandy, I know how long you've been trying to help your little boy. I remember your first post. Know that we're going to try to help you get through this. Not too long ago I saw a presentation from a doctor at Thoughtful House in the States. Among other things, he talked to us about a boy who tore gouges out of his own face and was covered in self-inflicted bruises because of the pain in his gut. This pain was caused by inflammation. Within a week of the right treatments, the boy was back to a smiling child--still covered in scabs, but none of them were new. He was out of pain. Does your son hold his belly, or push his belly against things? Does he sleep curled up, or pressing his belly against a pillow? Does he have diarrhea? Constipation? Does he seem to eat a normal amount at any one time? What foods would you be feeding him mostly now that he is GFCF and what foods was he eating mostly before? Please let me know the answers to these questions as there may be some other ideas that I have. I know it would be highly unlikely that you could travel to Thoughtful House, but maybe someone at Thoughtful House could recommend a physician where you live who could scope your son or maybe even guide your DAN in prescribing the necessary medications to deal with inflammation. Thoughtful House website is here: http://www.thoughtfulhouse.org/ Please hang in there. We will help you find the help you and your son need. Anita > > Please I need some advise... > > I had my son tested...finally...by a biomed dr. > He had stool and urine and blood tests. His stool and urine and blood did not show anti-bodies for gluten or casien. It did show some bad bacterias for which he will be getting probiotica. No insufficiency for vitamins...it only showed he had a big inflammation and they did found mercury, aluminium and lead. > > My son is 4.10 years old. Had severe seizures for 2,5 years. Is now seizure free but with slight abnormal EEG, he is non-verbal, not potty trained and does not play. He just cries all day (and I really mean cry and cry and cry). He is obsessed with balls and vacume cleaners and screems hell if we want to take him any where. Basically I sit in the house all day long waiting for the night and during the night he does not sleep thouhg the night and wakes up several times. > > My son was fine and normal and so sweet until 4 months, until his 3rd shot of DKTP/HIB. > > I just started him on the GF/CF diet with all supplements (Omega, vitamine E, b1, b6, b12, C, selenium, zinc, glutamine, carnosine, magnesium, calcium). We are doing this for 2 weeks now...no change. > > Medically there is not anything wrong with him...all tests are normal and dr.'s have no clue. > > Life with my son is hell...I love him so much but this life is not human anymore...not for him and not for me. > > Please guide me... > > Mandy > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2007 Report Share Posted February 4, 2007 Hi Mandy, I am so sorry to hear about what you and your boy are going through. I agree with Elaine and Anita, thinking that his gut might be the source of pain and the reason for crying. My son was pretty much like that. He cried from the moment he was born until almost two years later when we started SCD diet. If you suspect it could be his stomach, please do give this a try first of all. What are his other symptoms, do you suspect reflux - did he or does he still prefer to be in an upright position? This was a huge problem for my son, and it caused him sleep problems, he was simply in too much pain and would be trying to sit upright in bed. Also caused him waking up at night all the time, every night. This was helped a bit when we stopped giving him milk before bed, but SCDiet was what really helped to start his gut heal (the battle is not over yet, but he is not in pain and that is number one). Also, if that is the case, you may want to add a good probiotic, as well as digestive enzymes (Houston brand). Natasa > > > > Please I need some advise... > > > > I had my son tested...finally...by a biomed dr. > > He had stool and urine and blood tests. His stool and urine and > blood did not show anti-bodies for gluten or casien. It did show some > bad bacterias for which he will be getting probiotica. No > insufficiency for vitamins...it only showed he had a big inflammation > and they did found mercury, aluminium and lead. > > > > My son is 4.10 years old. Had severe seizures for 2,5 years. Is now > seizure free but with slight abnormal EEG, he is non-verbal, not > potty trained and does not play. He just cries all day (and I really > mean cry and cry and cry). He is obsessed with balls and vacume > cleaners and screems hell if we want to take him any where. Basically > I sit in the house all day long waiting for the night and during the > night he does not sleep thouhg the night and wakes up several times. > > > > My son was fine and normal and so sweet until 4 months, until his > 3rd shot of DKTP/HIB. > > > > I just started him on the GF/CF diet with all supplements (Omega, > vitamine E, b1, b6, b12, C, selenium, zinc, glutamine, carnosine, > magnesium, calcium). We are doing this for 2 weeks now...no change. > > > > Medically there is not anything wrong with him...all tests are > normal and dr.'s have no clue. > > > > Life with my son is hell...I love him so much but this life is not > human anymore...not for him and not for me. > > > > Please guide me... > > > > Mandy > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2007 Report Share Posted February 4, 2007 hi mandy what sort of levels of metal does ur son have in his results and if they r above normal chelation maybe something ur doctor will discuss with you once every thing is in place.i know how difficult things can be (havnt dealt with seizures but every thing else)and my heart goes out to you but maybe supplements need a little longer to work properly . it took about 4/5 weeks b4 i started noticing the change beginning and once it started it carried on getting better every day. if u ever need a friend im here love nikki xxx Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2007 Report Share Posted February 4, 2007 -Mandy, My heart goes out to you and your little boy.You have been offered great advise by these experienced and caring Mums. My daughter has found some relief with the use of diet and natural anti inflammatories such as Aloe Vera and Slippery elm. I remember the lack of sleep and the pain of seeing your child so distressed.It will get better. Love and Best wishes , Sharon xx -- In Autism Treatment , " Mandy " wrote: > > Please I need some advise... > > I had my son tested...finally...by a biomed dr. > He had stool and urine and blood tests. His stool and urine and blood did not show anti-bodies for gluten or casien. It did show some bad bacterias for which he will be getting probiotica. No insufficiency for vitamins...it only showed he had a big inflammation and they did found mercury, aluminium and lead. > > My son is 4.10 years old. Had severe seizures for 2,5 years. Is now seizure free but with slight abnormal EEG, he is non-verbal, not potty trained and does not play. He just cries all day (and I really mean cry and cry and cry). He is obsessed with balls and vacume cleaners and screems hell if we want to take him any where. Basically I sit in the house all day long waiting for the night and during the night he does not sleep thouhg the night and wakes up several times. > > My son was fine and normal and so sweet until 4 months, until his 3rd shot of DKTP/HIB. > > I just started him on the GF/CF diet with all supplements (Omega, vitamine E, b1, b6, b12, C, selenium, zinc, glutamine, carnosine, magnesium, calcium). We are doing this for 2 weeks now...no change. > > Medically there is not anything wrong with him...all tests are normal and dr.'s have no clue. > > Life with my son is hell...I love him so much but this life is not human anymore...not for him and not for me. > > Please guide me... > > Mandy > Quote Link to comment Share on other sites More sharing options...
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