Guest guest Posted June 21, 2007 Report Share Posted June 21, 2007 I spoke to several moms in here and was told it can be anywhere from a blood test to also a skin biopsy for testing. Of course I am sure someone can elaborate more, but this is what I got from talking to several moms here. Tracey Genetic Testing Hi, I have a question about what parents have experienced for genetic testing such as Marfans Syndrome. Max will be 2 years next month. All of his docs have recommended genetic testing. We have now decided this is something we would like to do. Does anyone know what is included in this test. Max is an active 2 year old. I am concerned he won't sit still for the necessary measurements. Any thoughts? Thank you, Aekta Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2007 Report Share Posted June 21, 2007 I spoke to several moms in here and was told it can be anywhere from a blood test to also a skin biopsy for testing. Of course I am sure someone can elaborate more, but this is what I got from talking to several moms here. Tracey Genetic Testing Hi, I have a question about what parents have experienced for genetic testing such as Marfans Syndrome. Max will be 2 years next month. All of his docs have recommended genetic testing. We have now decided this is something we would like to do. Does anyone know what is included in this test. Max is an active 2 year old. I am concerned he won't sit still for the necessary measurements. Any thoughts? Thank you, Aekta Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2007 Report Share Posted June 21, 2007 Genetic Testing Hi, I have a question about what parents have experienced for genetic testing such as Marfans Syndrome. Max will be 2 years next month. All of his docs have recommended genetic testing. We have now decided this is something we would like to do. Does anyone know what is included in this test. Max is an active 2 year old. I am concerned he won't sit still for the necessary measurements. Any thoughts? Thank you, Aekta Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2007 Report Share Posted June 21, 2007 Genetic Testing Hi, I have a question about what parents have experienced for genetic testing such as Marfans Syndrome. Max will be 2 years next month. All of his docs have recommended genetic testing. We have now decided this is something we would like to do. Does anyone know what is included in this test. Max is an active 2 year old. I am concerned he won't sit still for the necessary measurements. Any thoughts? Thank you, Aekta Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2007 Report Share Posted June 21, 2007 My daughter recently went through genetic testing with a neurogenetic specialist at the Children's Hospital here (Riley Hospital for Children in Indianapolis). Both the neurosurgeon and the paleontologist strongly suggested it. They took blood and urine, which was sent off to many different labs around the world for a long list of tests- some that can take 8-10 weeks to get back. I received a call this week that the test for Marfans Syndrome was negative (which is what they thought). We have a follow up appt next week but they may not have all of the test results back yet. Since she is still pretty young (almost 9 months), they said many symptoms in these rate syndromes don't present themselves until the kids are 2-3 years old or younger. If your insurance will cover it, you may want to consider it as an option. So far it has been pretty easy on her. Good luck and all the best to you and Max. Tina Genetic Testing Hi, I have a question about what parents have experienced for genetic testing such as Marfans Syndrome. Max will be 2 years next month. All of his docs have recommended genetic testing. We have now decided this is something we would like to do. Does anyone know what is included in this test. Max is an active 2 year old. I am concerned he won't sit still for the necessary measurements. Any thoughts? Thank you, Aekta Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2007 Report Share Posted June 21, 2007 My daughter recently went through genetic testing with a neurogenetic specialist at the Children's Hospital here (Riley Hospital for Children in Indianapolis). Both the neurosurgeon and the paleontologist strongly suggested it. They took blood and urine, which was sent off to many different labs around the world for a long list of tests- some that can take 8-10 weeks to get back. I received a call this week that the test for Marfans Syndrome was negative (which is what they thought). We have a follow up appt next week but they may not have all of the test results back yet. Since she is still pretty young (almost 9 months), they said many symptoms in these rate syndromes don't present themselves until the kids are 2-3 years old or younger. If your insurance will cover it, you may want to consider it as an option. So far it has been pretty easy on her. Good luck and all the best to you and Max. Tina Genetic Testing Hi, I have a question about what parents have experienced for genetic testing such as Marfans Syndrome. Max will be 2 years next month. All of his docs have recommended genetic testing. We have now decided this is something we would like to do. Does anyone know what is included in this test. Max is an active 2 year old. I am concerned he won't sit still for the necessary measurements. Any thoughts? Thank you, Aekta Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2007 Report Share Posted June 21, 2007 My daughter recently went through genetic testing with a neurogenetic specialist at the Children's Hospital here (Riley Hospital for Children in Indianapolis). Both the neurosurgeon and the paleontologist strongly suggested it. They took blood and urine, which was sent off to many different labs around the world for a long list of tests- some that can take 8-10 weeks to get back. I received a call this week that the test for Marfans Syndrome was negative (which is what they thought). We have a follow up appt next week but they may not have all of the test results back yet. Since she is still pretty young (almost 9 months), they said many symptoms in these rate syndromes don't present themselves until the kids are 2-3 years old or younger. If your insurance will cover it, you may want to consider it as an option. So far it has been pretty easy on her. Good luck and all the best to you and Max. Tina Genetic Testing Hi, I have a question about what parents have experienced for genetic testing such as Marfans Syndrome. Max will be 2 years next month. All of his docs have recommended genetic testing. We have now decided this is something we would like to do. Does anyone know what is included in this test. Max is an active 2 year old. I am concerned he won't sit still for the necessary measurements. Any thoughts? Thank you, Aekta Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2007 Report Share Posted June 21, 2007 I don't recall any measurements. There were blood tests, mouth swab, maybe a urine sample, and they did a muscle biopsy while she was under for casting. Our geneticist spent a great deal of time observing and touching, but she was also very active at the time (still is) and he didn't have to force her to sit still for anything, maybe he just measured here and there--we were with him talking and him watching for almost 2 hours. ________________________________ From: infantile_scoliosis [mailto:infantile_scoliosis ] On Behalf Of babymaxpd Sent: Wednesday, June 20, 2007 8:06 PM To: infantile_scoliosis Subject: Genetic Testing Hi, I have a question about what parents have experienced for genetic testing such as Marfans Syndrome. Max will be 2 years next month. All of his docs have recommended genetic testing. We have now decided this is something we would like to do. Does anyone know what is included in this test. Max is an active 2 year old. I am concerned he won't sit still for the necessary measurements. Any thoughts? Thank you, Aekta Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2007 Report Share Posted June 21, 2007 Hi Aekta My daughter has had genetic testing for " Connective Tissue Disorders " when she was about 2 years old, and Marfan Syndrome was confirmed on a follow up visit when she was 6 yrs old. From what I remember, there was a full examination, and it seems that EVERYTHING was measured and documented! We were sent for some blood work (nothing showed up), x-rays of her hands and feet (she does have very long bones), spine, where her scoliosis was first detected, an echo cardiogram (for any heart problems) and a special (slit lamp) eye exam. All this took a few months to schedule etc., then we went back to discuss the findings. The findings weren't conculsive, even though she exhibited many of the findings, the criteria for dx is very strict. We continued with the dx of a " connective tissue disorder/ probable Marfan Syndrome until things progressed, and as I said, the dx was confirmed a couple of years later. Be prepared for Max to get a lot of 'prodding and poking' - not painful, but time consuming! But if you are going to see a Pediatric Genetics Doctor, they'll be used to dealing with squirmy active toddlers! Hope this helps, and I haven't put you off going - LOL Let us know how it goes. Jacki and Siobhan > > Hi, > > I have a question about what parents have experienced for genetic > testing such as Marfans Syndrome. > > Max will be 2 years next month. All of his docs have recommended > genetic testing. We have now decided this is something we would like > to do. > > Does anyone know what is included in this test. Max is an active 2 > year old. I am concerned he won't sit still for the necessary > measurements. > > Any thoughts? > > Thank you, > Aekta > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2007 Report Share Posted June 23, 2007 My middle child, Chastain, has Down Syndrome and we had genetics testing done when she was a few days old. It consisted of only a blood test. My husband and I also had to have the same test done to see if we were carriers of Down Syndrome. (We weren't carriers). Anyway after she was diagnosed we were seen by a Genetics doctor in the hospital, then every 6 months to a year we have an appointment with a Genetic doctor. The genetics appointment was much like a regular check up with a pediatrician. And the genetics doctor would give us insight on what we could expect as she grew. Hope this helps. ~ Mother to Ethan 13months (infantile scoliosis) Chastain 5years (Down Syndrome) a 8years (super sister) > > Hi, > > I have a question about what parents have experienced for genetic > testing such as Marfans Syndrome. > > Max will be 2 years next month. All of his docs have recommended > genetic testing. We have now decided this is something we would like > to do. > > Does anyone know what is included in this test. Max is an active 2 > year old. I am concerned he won't sit still for the necessary > measurements. > > Any thoughts? > > Thank you, > Aekta > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2007 Report Share Posted June 23, 2007 My middle child, Chastain, has Down Syndrome and we had genetics testing done when she was a few days old. It consisted of only a blood test. My husband and I also had to have the same test done to see if we were carriers of Down Syndrome. (We weren't carriers). Anyway after she was diagnosed we were seen by a Genetics doctor in the hospital, then every 6 months to a year we have an appointment with a Genetic doctor. The genetics appointment was much like a regular check up with a pediatrician. And the genetics doctor would give us insight on what we could expect as she grew. Hope this helps. ~ Mother to Ethan 13months (infantile scoliosis) Chastain 5years (Down Syndrome) a 8years (super sister) > > Hi, > > I have a question about what parents have experienced for genetic > testing such as Marfans Syndrome. > > Max will be 2 years next month. All of his docs have recommended > genetic testing. We have now decided this is something we would like > to do. > > Does anyone know what is included in this test. Max is an active 2 > year old. I am concerned he won't sit still for the necessary > measurements. > > Any thoughts? > > Thank you, > Aekta > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2007 Report Share Posted June 23, 2007 My middle child, Chastain, has Down Syndrome and we had genetics testing done when she was a few days old. It consisted of only a blood test. My husband and I also had to have the same test done to see if we were carriers of Down Syndrome. (We weren't carriers). Anyway after she was diagnosed we were seen by a Genetics doctor in the hospital, then every 6 months to a year we have an appointment with a Genetic doctor. The genetics appointment was much like a regular check up with a pediatrician. And the genetics doctor would give us insight on what we could expect as she grew. Hope this helps. ~ Mother to Ethan 13months (infantile scoliosis) Chastain 5years (Down Syndrome) a 8years (super sister) > > Hi, > > I have a question about what parents have experienced for genetic > testing such as Marfans Syndrome. > > Max will be 2 years next month. All of his docs have recommended > genetic testing. We have now decided this is something we would like > to do. > > Does anyone know what is included in this test. Max is an active 2 > year old. I am concerned he won't sit still for the necessary > measurements. > > Any thoughts? > > Thank you, > Aekta > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2007 Report Share Posted July 18, 2007 It's mostly blood work. The newest test available is the micro-assay & I would inquire about that. - ksteltz77 <kmay77@...> wrote: Ugh. On top of having just received the Subclass 3 immune def. dx last week....we saw the Developmental Pediatrician today and she wants us to do genetic testing on my son b/c he has a few suspicious birthmarks (cafe au lait birth marks). I am wondering if any of you have done genetic testing and what is the first appt like? My husband doesn't really have contact with alot of his family so he doesn't have access to a lot of medical history. Will they just ask family history? What if you don't have access to it? Do they just draw blood then? We are anxious and have NO IDEA what to expect. thanks in advance, Kim --------------------------------- Get the toolbar and be alerted to new email wherever you're surfing. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2007 Report Share Posted July 18, 2007 The genetics appt was probably one of the easiest appt that we have had. jacob has 3 fairly large cafe au lait spots, and has started to get some other ones that are smaller. Cafe au lait can be a sign of Neurofibromatosis, but the size needs to be quite large. How many does he have? are they changing? We filled out as much information as we could. My husband's family is quite private as well, so we didn't have alot of info either. I would probably go ahead and meet with the genetic doctor....they did not draw anything on Jake....but all are different. He may feel the spots are nothing...or he may not... Hope that helps... , Mom to , PID, Not otherwise specified...NK cell defect, hypogam, selective antibody deficiency.....awaiting test results....on SCIG again.. and doing better... Quoting ksteltz77 <kmay77@...>: > Ugh. On top of having just received the Subclass 3 immune def. dx last > week....we saw the > Developmental Pediatrician today and she wants us to do genetic testing on my > son b/c he > has a few suspicious birthmarks (cafe au lait birth marks). I am wondering > if any of you have > done genetic testing and what is the first appt like? My husband doesn't > really have contact > with alot of his family so he doesn't have access to a lot of medical > history. Will they just ask > family history? What if you don't have access to it? Do they just draw > blood then? We are > anxious and have NO IDEA what to expect. thanks in advance, Kim > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2007 Report Share Posted July 18, 2007 hi kim we just had testing done it was blood work and pictures and questions. i hope all is well. ksteltz77 <kmay77@...> wrote: Ugh. On top of having just received the Subclass 3 immune def. dx last week....we saw the Developmental Pediatrician today and she wants us to do genetic testing on my son b/c he has a few suspicious birthmarks (cafe au lait birth marks). I am wondering if any of you have done genetic testing and what is the first appt like? My husband doesn't really have contact with alot of his family so he doesn't have access to a lot of medical history. Will they just ask family history? What if you don't have access to it? Do they just draw blood then? We are anxious and have NO IDEA what to expect. thanks in advance, Kim --------------------------------- Park yourself in front of a world of choices in alternative vehicles. Visit the Auto Green Center. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 19, 2007 Report Share Posted July 19, 2007 We did genetic testing - my husband and I had to fill out pages and pages of family medical history. My husband's family isn't so good at sharing the details about illnesses and what people died of - I got very sick of hearing about so many people that died of " old age " in his family - like that is a real illness - so we just shared what we knew for sure. They really concentrated on miscarriages, birth defects and those types of things. The did bloodwork on my son and then bloodwork on us. About a year later they also took bloodwork from our son to freeze for future genetic testing (don't really know what that was all about, but we did it). We haven't done bloodwork for our other kids - and may need to in the future when they have a more definite diagnosis for us. Kim, mom to age 5 with Hyper IgE (Job's Syndrome) >From: " ksteltz77 " <kmay77@...> >Reply- > >Subject: Genetic Testing >Date: Wed, 18 Jul 2007 23:43:09 -0000 > >Ugh. On top of having just received the Subclass 3 immune def. dx last >week....we saw the >Developmental Pediatrician today and she wants us to do genetic testing on >my son b/c he >has a few suspicious birthmarks (cafe au lait birth marks). I am wondering >if any of you have >done genetic testing and what is the first appt like? My husband doesn't >really have contact >with alot of his family so he doesn't have access to a lot of medical >history. Will they just ask >family history? What if you don't have access to it? Do they just draw >blood then? We are >anxious and have NO IDEA what to expect. thanks in advance, Kim > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 19, 2007 Report Share Posted July 19, 2007 hi kim im a mom of a 5 yr old with hyper ige aka(job syndrome) and degoerge syndrome my husbands mom was the same way and was always passing blame on my family,when all facts the doc said it was my husband with the genetic jean for job syndrome. we take it day by day with are son we also had a girls checked and they have a very mild case of the hyper ige. our son who has many many medical issues. can i ask where do you all live im in wisconsin and its hard to find ppl to talk to or even for are son to play with. did your son get his childhood shots? please email soon lilwildones@... take care hugss to all Kim MacEachern <kimmaceachern@...> wrote: We did genetic testing - my husband and I had to fill out pages and pages of family medical history. My husband's family isn't so good at sharing the details about illnesses and what people died of - I got very sick of hearing about so many people that died of " old age " in his family - like that is a real illness - so we just shared what we knew for sure. They really concentrated on miscarriages, birth defects and those types of things. The did bloodwork on my son and then bloodwork on us. About a year later they also took bloodwork from our son to freeze for future genetic testing (don't really know what that was all about, but we did it). We haven't done bloodwork for our other kids - and may need to in the future when they have a more definite diagnosis for us. Kim, mom to age 5 with Hyper IgE (Job's Syndrome) >From: " ksteltz77 " <kmay77@...> >Reply- > >Subject: Genetic Testing >Date: Wed, 18 Jul 2007 23:43:09 -0000 > >Ugh. On top of having just received the Subclass 3 immune def. dx last >week....we saw the >Developmental Pediatrician today and she wants us to do genetic testing on >my son b/c he >has a few suspicious birthmarks (cafe au lait birth marks). I am wondering >if any of you have >done genetic testing and what is the first appt like? My husband doesn't >really have contact >with alot of his family so he doesn't have access to a lot of medical >history. Will they just ask >family history? What if you don't have access to it? Do they just draw >blood then? We are >anxious and have NO IDEA what to expect. thanks in advance, Kim > --------------------------------- oneSearch: Finally, mobile search that gives answers, not web links. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 19, 2007 Report Share Posted July 19, 2007 We live in Pennsylvania and my son did get his shots up to 15mo of age. We always separated them (he only got one at a time seperated by weeks or months). He has not had one vaccine since 15mo old. I just discussed with his allergist possibly giving him the Pneumococcal vax and then running titers. It makes me nervous NOT to give him vaccines but I am an autism specialist by education and training. I'm not sure that I believe that vaccines " cause " autism. i do beilive it might be a contributing factor for SOME kids, not all. I do strongly feel that the pharm companies are SERIOUSLY driving the vaccine issue...our immune systems just don't have to work like they used to. we vaccinate against everything. there are no longitudinal studies to give us an idea of how this plays out in the immune system over time. Anyway, I don't sleep well at night EITHEr way. Either option is a risk. My son has some developmental delays (he seems to be testing age appropriate in most areas but....) in that he has sensory processing disorder (almost like early emerging ADHD) and what looks to be mild apraxia. So, this is another reason we are careful. I just do NOT believe that all of this is UNRELATED (immune issues, developmental issues etc). Kim >From: nancy kuhr <lilwildones@...> >Reply- > >Subject: RE: Genetic Testing >Date: Thu, 19 Jul 2007 11:09:09 -0700 (PDT) > >hi kim im a mom of a 5 yr old with hyper ige aka(job syndrome) and degoerge >syndrome my husbands mom was the same way and was always passing blame on >my family,when all facts the doc said it was my husband with the genetic >jean for job syndrome. we take it day by day with are son we also had a >girls checked and they have a very mild case of the hyper ige. our son who >has many many medical issues. can i ask where do you all live im in >wisconsin and its hard to find ppl to talk to or even for are son to play >with. did your son get his childhood shots? please email soon >lilwildones@... take care hugss to all > >Kim MacEachern <kimmaceachern@...> wrote: We did genetic >testing - my husband and I had to fill out pages and pages of >family medical history. My husband's family isn't so good at sharing the >details about illnesses and what people died of - I got very sick of >hearing >about so many people that died of " old age " in his family - like that is a >real illness - so we just shared what we knew for sure. They really >concentrated on miscarriages, birth defects and those types of things. > >The did bloodwork on my son and then bloodwork on us. About a year later >they also took bloodwork from our son to freeze for future genetic testing >(don't really know what that was all about, but we did it). We haven't done >bloodwork for our other kids - and may need to in the future when they have >a more definite diagnosis for us. > >Kim, mom to age 5 with Hyper IgE (Job's Syndrome) > > >From: " ksteltz77 " <kmay77@...> > >Reply- > > > >Subject: Genetic Testing > >Date: Wed, 18 Jul 2007 23:43:09 -0000 > > > >Ugh. On top of having just received the Subclass 3 immune def. dx last > >week....we saw the > >Developmental Pediatrician today and she wants us to do genetic testing >on > >my son b/c he > >has a few suspicious birthmarks (cafe au lait birth marks). I am >wondering > >if any of you have > >done genetic testing and what is the first appt like? My husband doesn't > >really have contact > >with alot of his family so he doesn't have access to a lot of medical > >history. Will they just ask > >family history? What if you don't have access to it? Do they just draw > >blood then? We are > >anxious and have NO IDEA what to expect. thanks in advance, Kim > > > > > > > > >--------------------------------- > oneSearch: Finally, mobile search that gives answers, not web >links. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 19, 2007 Report Share Posted July 19, 2007 We live in Pennsylvania and my son did get his shots up to 15mo of age. We always separated them (he only got one at a time seperated by weeks or months). He has not had one vaccine since 15mo old. I just discussed with his allergist possibly giving him the Pneumococcal vax and then running titers. It makes me nervous NOT to give him vaccines but I am an autism specialist by education and training. I'm not sure that I believe that vaccines " cause " autism. i do beilive it might be a contributing factor for SOME kids, not all. I do strongly feel that the pharm companies are SERIOUSLY driving the vaccine issue...our immune systems just don't have to work like they used to. we vaccinate against everything. there are no longitudinal studies to give us an idea of how this plays out in the immune system over time. Anyway, I don't sleep well at night EITHEr way. Either option is a risk. My son has some developmental delays (he seems to be testing age appropriate in most areas but....) in that he has sensory processing disorder (almost like early emerging ADHD) and what looks to be mild apraxia. So, this is another reason we are careful. I just do NOT believe that all of this is UNRELATED (immune issues, developmental issues etc). Kim >From: nancy kuhr <lilwildones@...> >Reply- > >Subject: RE: Genetic Testing >Date: Thu, 19 Jul 2007 11:09:09 -0700 (PDT) > >hi kim im a mom of a 5 yr old with hyper ige aka(job syndrome) and degoerge >syndrome my husbands mom was the same way and was always passing blame on >my family,when all facts the doc said it was my husband with the genetic >jean for job syndrome. we take it day by day with are son we also had a >girls checked and they have a very mild case of the hyper ige. our son who >has many many medical issues. can i ask where do you all live im in >wisconsin and its hard to find ppl to talk to or even for are son to play >with. did your son get his childhood shots? please email soon >lilwildones@... take care hugss to all > >Kim MacEachern <kimmaceachern@...> wrote: We did genetic >testing - my husband and I had to fill out pages and pages of >family medical history. My husband's family isn't so good at sharing the >details about illnesses and what people died of - I got very sick of >hearing >about so many people that died of " old age " in his family - like that is a >real illness - so we just shared what we knew for sure. They really >concentrated on miscarriages, birth defects and those types of things. > >The did bloodwork on my son and then bloodwork on us. About a year later >they also took bloodwork from our son to freeze for future genetic testing >(don't really know what that was all about, but we did it). We haven't done >bloodwork for our other kids - and may need to in the future when they have >a more definite diagnosis for us. > >Kim, mom to age 5 with Hyper IgE (Job's Syndrome) > > >From: " ksteltz77 " <kmay77@...> > >Reply- > > > >Subject: Genetic Testing > >Date: Wed, 18 Jul 2007 23:43:09 -0000 > > > >Ugh. On top of having just received the Subclass 3 immune def. dx last > >week....we saw the > >Developmental Pediatrician today and she wants us to do genetic testing >on > >my son b/c he > >has a few suspicious birthmarks (cafe au lait birth marks). I am >wondering > >if any of you have > >done genetic testing and what is the first appt like? My husband doesn't > >really have contact > >with alot of his family so he doesn't have access to a lot of medical > >history. Will they just ask > >family history? What if you don't have access to it? Do they just draw > >blood then? We are > >anxious and have NO IDEA what to expect. thanks in advance, Kim > > > > > > > > >--------------------------------- > oneSearch: Finally, mobile search that gives answers, not web >links. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2008 Report Share Posted March 26, 2008 You can go the fmf group at . They can explain all about how one or two genes affect a body good luck. ************** Create a Home Theater Like the Pros. Watch the video on AOL Home. (http://home.aol.com/diy/home-improvement-eric-stromer?video=15?ncid=aolhom00030\ 000000001) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2008 Report Share Posted March 26, 2008 Melody began these episodes of fever at 3 months, and it wasn't until she was 18 months that she was diagnosed. When all other test were negative, she was gentically tested. It was then discovered that she had one gene for FMF (Familiar Mediteranian Fever) In order for the fevers to be persistent she should have had two genes matching. So in Melody's case this didn't come about until every other possiblity was ruled out. My questions is, have any other parents gotten tested? It was suggested, but my husband saw no point since neither one of us suffer from any symptoms. Bronx, NY Melody fevering since 3 months Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2008 Report Share Posted March 26, 2008 I was just tested for TRAPS on Monday. Neither of us have fevers, but I have experienced several miscarriages and a still birth. Aiden's doctor believes that treatment might help us carry a child to term, if I am the carrier for TRAPS. We have to wait several weeks for the test results. I'm anxious for some answers. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2008 Report Share Posted March 26, 2008 I was just tested for TRAPS on Monday. Neither of us have fevers, but I have experienced several miscarriages and a still birth. Aiden's doctor believes that treatment might help us carry a child to term, if I am the carrier for TRAPS. We have to wait several weeks for the test results. I'm anxious for some answers. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2008 Report Share Posted March 26, 2008 I was just tested for TRAPS on Monday. Neither of us have fevers, but I have experienced several miscarriages and a still birth. Aiden's doctor believes that treatment might help us carry a child to term, if I am the carrier for TRAPS. We have to wait several weeks for the test results. I'm anxious for some answers. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2008 Report Share Posted March 28, 2008 Definitely check with the FMF group, but I THOUGHT that FMF works differently than most other genes because a person CAN be effected if they only have one gene for it. For us we went through all the PFS genetic tests, but the FMF took the longest to come back because Gene DX said that finding FMF takes a closer look because the genes for FMF behave differently thank the rest and it is sometimes tricky to identify. I know there is more info about this on the NIHs website, but I have a hard time following the terminology. Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.