Guest guest Posted August 12, 2002 Report Share Posted August 12, 2002 Hi Welcome to our group ! We have a great support group here and we are here to help each with all sorts of issues. They are a wonderful group of people that I honestly do not know what I would do without. We are all here to help you and look forward to hearing more about and your family. Whareabouts do you live ? We are in Blackpool in the UK. I'm sure there will be lots of other parents introducing themselves very soon. Judy (Mum to 9yrs mds) Introduction > My name is . My oldest daughter, , turned 8 years old > in May. We have known she had Mosaic DS since she was 10 months old. > We just happened upon a specialist because a heart murmer was found > who took one look at her and wanted us to have her checked for DS. > We knew something wasn't right from the beginning. I had a terrible > pregnancy and a was born with a type of blood poisoning she > had contracted from me. The doctors did not have an idea of why or > how. We were told it could affect her hearing and eye sight. I > still hear from doctors, " You were too young to have a child with DS " > I always just look at them and say nothing. > started school a year late and is going to go through first > grade again this year. She has progressed so much...but not enough > to survive the new state curriculum. (It is tough for a typical child) > But, we are thriving. She is now well, we have made it through almost > a year without any major illness and her speech has really improved > along with her hearing and eyesight. We now have hope that her ears > may be well enough to remove any left pt tubes and repair the whole > in her right eardrum. We also got a good report from the optometrist. > > It has been a tough year, my children have had to endure my > separation from their dad and moving to a new home. But they have > not only survived, but actually thrived. is a remarkable > child in that she loves computers, vcrs, stereos, karaoke, and cash > registers. She will work and watch until she figures her way into or > out of anything. > > Until my boss stumbled onto the Mosaic DS website I had never even > heard of another child with same condition. I had searched many > libraries after we learned about her Mosaic DS and found nothing. I > truly appreciate the opportunity to be able to communicate with other > people who face the same or similar situations. > > > > > > Won't you please consider adding your personal story on the MDS website today? http://www.mosaicdownsyndrome.com > ************************************************* > MDS MESSAGE BOARD - http://www.mosaicdownsyndrome.com/discus > ************************************************* > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2002 Report Share Posted August 12, 2002 Hi Judy I noticed you said you are in Blackpool, we are in Durham UK. Are there many others in the group from the UK? Helen (mum to Bobby 3) Introduction > My name is . My oldest daughter, , turned 8 years old > in May. We have known she had Mosaic DS since she was 10 months old. > We just happened upon a specialist because a heart murmer was found > who took one look at her and wanted us to have her checked for DS. > We knew something wasn't right from the beginning. I had a terrible > pregnancy and a was born with a type of blood poisoning she > had contracted from me. The doctors did not have an idea of why or > how. We were told it could affect her hearing and eye sight. I > still hear from doctors, " You were too young to have a child with DS " > I always just look at them and say nothing. > started school a year late and is going to go through first > grade again this year. She has progressed so much...but not enough > to survive the new state curriculum. (It is tough for a typical child) > But, we are thriving. She is now well, we have made it through almost > a year without any major illness and her speech has really improved > along with her hearing and eyesight. We now have hope that her ears > may be well enough to remove any left pt tubes and repair the whole > in her right eardrum. We also got a good report from the optometrist. > > It has been a tough year, my children have had to endure my > separation from their dad and moving to a new home. But they have > not only survived, but actually thrived. is a remarkable > child in that she loves computers, vcrs, stereos, karaoke, and cash > registers. She will work and watch until she figures her way into or > out of anything. > > Until my boss stumbled onto the Mosaic DS website I had never even > heard of another child with same condition. I had searched many > libraries after we learned about her Mosaic DS and found nothing. I > truly appreciate the opportunity to be able to communicate with other > people who face the same or similar situations. > > > > > > Won't you please consider adding your personal story on the MDS website today? http://www.mosaicdownsyndrome.com > ************************************************* > MDS MESSAGE BOARD - http://www.mosaicdownsyndrome.com/discus > ************************************************* > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2002 Report Share Posted August 12, 2002 Hello and Helen - Welcome to our little (or not so little) group. My daughter, , has MDS - she is 3. We didn't find out about the MDS until she was 4 months old. is a very lovable, social child who has no problems making friends and loves to be in the center of things. She also has no fear of strangers or situations. We live in Eastern PA in the US. There are many people here who can answer most of your questions. Many times they have already been through that. Welcome! Darlene (Mom to , 3 and , 5) Introduction My name is . My oldest daughter, , turned 8 years old in May. We have known she had Mosaic DS since she was 10 months old. We just happened upon a specialist because a heart murmer was found who took one look at her and wanted us to have her checked for DS. We knew something wasn't right from the beginning. I had a terrible pregnancy and a was born with a type of blood poisoning she had contracted from me. The doctors did not have an idea of why or how. We were told it could affect her hearing and eye sight. I still hear from doctors, " You were too young to have a child with DS " I always just look at them and say nothing. started school a year late and is going to go through first grade again this year. She has progressed so much...but not enough to survive the new state curriculum. (It is tough for a typical child) But, we are thriving. She is now well, we have made it through almost a year without any major illness and her speech has really improved along with her hearing and eyesight. We now have hope that her ears may be well enough to remove any left pt tubes and repair the whole in her right eardrum. We also got a good report from the optometrist. It has been a tough year, my children have had to endure my separation from their dad and moving to a new home. But they have not only survived, but actually thrived. is a remarkable child in that she loves computers, vcrs, stereos, karaoke, and cash registers. She will work and watch until she figures her way into or out of anything. Until my boss stumbled onto the Mosaic DS website I had never even heard of another child with same condition. I had searched many libraries after we learned about her Mosaic DS and found nothing. I truly appreciate the opportunity to be able to communicate with other people who face the same or similar situations. Won't you please consider adding your personal story on the MDS website today? http://www.mosaicdownsyndrome.com ************************************************* MDS MESSAGE BOARD - http://www.mosaicdownsyndrome.com/discus ************************************************* Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2002 Report Share Posted August 12, 2002 Hi Darlene and thanks for the welcome One thing I have been wondering is this....do many people find their kids with MDS are over active? Bobby just doesn't seem to understand the concept of sitting still, repeatedly empties cupboards/toy boxes/whatever he can. He is also VERY loud! I know I might need to be looking at a separate diagnosis possibly of ADHD here but wondered how common a trait this is amongst MDS kids Helen Introduction My name is . My oldest daughter, , turned 8 years old in May. We have known she had Mosaic DS since she was 10 months old. We just happened upon a specialist because a heart murmer was found who took one look at her and wanted us to have her checked for DS. We knew something wasn't right from the beginning. I had a terrible pregnancy and a was born with a type of blood poisoning she had contracted from me. The doctors did not have an idea of why or how. We were told it could affect her hearing and eye sight. I still hear from doctors, " You were too young to have a child with DS " I always just look at them and say nothing. started school a year late and is going to go through first grade again this year. She has progressed so much...but not enough to survive the new state curriculum. (It is tough for a typical child) But, we are thriving. She is now well, we have made it through almost a year without any major illness and her speech has really improved along with her hearing and eyesight. We now have hope that her ears may be well enough to remove any left pt tubes and repair the whole in her right eardrum. We also got a good report from the optometrist. It has been a tough year, my children have had to endure my separation from their dad and moving to a new home. But they have not only survived, but actually thrived. is a remarkable child in that she loves computers, vcrs, stereos, karaoke, and cash registers. She will work and watch until she figures her way into or out of anything. Until my boss stumbled onto the Mosaic DS website I had never even heard of another child with same condition. I had searched many libraries after we learned about her Mosaic DS and found nothing. I truly appreciate the opportunity to be able to communicate with other people who face the same or similar situations. Won't you please consider adding your personal story on the MDS website today? http://www.mosaicdownsyndrome.com ************************************************* MDS MESSAGE BOARD - http://www.mosaicdownsyndrome.com/discus ************************************************* Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2002 Report Share Posted August 12, 2002 Helen - loves to empty her toy boxes because she can - but she will also sit down with a book and " read " the book. Or sit at the table and " feed " her dolls - she is a very good mommy to them. She mostly likes to make a mess but will clean it up with prompting - she knows where everything goes. As for loud - is mostly non-verbal but will say NO at the top of her lungs and when that happens we just remind her that she needs to use indoor voice when she is in the house, her brother is sometimes loud too and we have to remind him as well. As for not sitting still, it is good that Bobby is active as I often worry about and the weight problems that some DS or MDS kids have. We put on music for her and she will dance, to anything including commercials. I have been thinking of enrolling her in a dance class but I think it may be too early - I will wait until next year when hopefully she will be more verbal. How is Bobby and Potty Training? I am going through that with right now - I hate potty training! Some kids on this list do have an ADHD diagnosis as well but luckily doesn't. My son also has ants in the pants but is could just be a boy thing. Darlene (Mom to , 5 and , 3 MDS) Re: Introduction Hi Darlene and thanks for the welcome One thing I have been wondering is this....do many people find their kids with MDS are over active? Bobby just doesn't seem to understand the concept of sitting still, repeatedly empties cupboards/toy boxes/whatever he can. He is also VERY loud! I know I might need to be looking at a separate diagnosis possibly of ADHD here but wondered how common a trait this is amongst MDS kids Helen Introduction My name is . My oldest daughter, , turned 8 years old in May. We have known she had Mosaic DS since she was 10 months old. We just happened upon a specialist because a heart murmer was found who took one look at her and wanted us to have her checked for DS. We knew something wasn't right from the beginning. I had a terrible pregnancy and a was born with a type of blood poisoning she had contracted from me. The doctors did not have an idea of why or how. We were told it could affect her hearing and eye sight. I still hear from doctors, " You were too young to have a child with DS " I always just look at them and say nothing. started school a year late and is going to go through first grade again this year. She has progressed so much...but not enough to survive the new state curriculum. (It is tough for a typical child) But, we are thriving. She is now well, we have made it through almost a year without any major illness and her speech has really improved along with her hearing and eyesight. We now have hope that her ears may be well enough to remove any left pt tubes and repair the whole in her right eardrum. We also got a good report from the optometrist. It has been a tough year, my children have had to endure my separation from their dad and moving to a new home. But they have not only survived, but actually thrived. is a remarkable child in that she loves computers, vcrs, stereos, karaoke, and cash registers. She will work and watch until she figures her way into or out of anything. Until my boss stumbled onto the Mosaic DS website I had never even heard of another child with same condition. I had searched many libraries after we learned about her Mosaic DS and found nothing. I truly appreciate the opportunity to be able to communicate with other people who face the same or similar situations. Won't you please consider adding your personal story on the MDS website today? http://www.mosaicdownsyndrome.com ************************************************* MDS MESSAGE BOARD - http://www.mosaicdownsyndrome.com/discus ************************************************* Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2002 Report Share Posted August 12, 2002 Helen, It is quite possible that Bobby has MDS. I would take Bobby to the doctor and Insist on having a karyotype done. This is where the doctors take a blood sample and check his cells. Also, I would ask for a skin sample too. The doctors can make a small rub on the inside of his cheek. When someone has MDS, sometimes the trisomy 21 cells show up in the skin and other times in the blood. It can also be present in both skin and blood. I suggest that you go back to our web site www.mosaicdownsyndrome.com and print out some of the MDS info. Dr. Len Leshin's essay on MDS may be enough information for the doctors to read on. Many doctors have never heard of MDS, so that is why it is often missed. You may have to be insistant on the blood and skin sample. But, be persistant if that is the case. I can't help but wonder if Bobby is receiving any therapy for his language delay? Also, are his motor skills delayed? If he is not receiving therapy for these, you definately need to have him evaluated for speech, fine and gross motor skills. Please let us know what comes out of the doctor. We are here to support you in any way we can. Kristy Colvin President IMDSA --- Helen G wrote: > Hi all > > My name is Helen and I have a son (just turned 3) > called Bobby. > > For some time I have been thinking he displays a few > " Down's " type > behaviours and suddenly last week I really noticed > his eyes properly and > realised he has the epicanthic fold, my partner has > often commented on the > basic shape of his eyes being odd. (I think I was > blinded to the problems so > much that I couldn't see what was right there in > front of me). > > Bobby's behaviour has become more unusual as he has > got older although he > has always been extremely over affectionate we > thought he would grow out of > it etc etc. He has a language delay and a few other > symptoms. > > I stumbled accidentally across > www.mosaicdownsyndrome.com and it all > suddenly became clear. > > I have noticed a few people have said their children > were diagnosed quite > late and I assume these are the ones with fewer > physical signs than others. > > Basically I need more information to be armed with > when we see the > paediatrician in a few weeks time and I also need to > get a better idea of > whether or not I am really on the right track or if > I am just clutching at > straws and making the answers fit. > > I am at the end of my tether with his behaviour and > very concerned for his > safety as he is a real houdini and likes to roam off > with no sign of fear of > anyone or anything. > > Helen > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 14, 2002 Report Share Posted August 14, 2002 Dear , Hi and welcome. My name is Kirsty husband Craig 2 boys on 5 and Wiliam 3 MDS. This website has been fantastic for us. Everyone is very nice and friendly it's like one big happy family. Until we found everyone we were pretty much on our own with not a lot of information available. We have a great dsoctor who has been reading up as much as he can on mds to help us. hopefully starts pre school next term. His speech is delayed but more and more words are coming. We live in Adelaide in Australia. Love Kirsty Introduction My name is . My oldest daughter, , turned 8 years old in May. We have known she had Mosaic DS since she was 10 months old.We just happened upon a specialist because a heart murmer was found who took one look at her and wanted us to have her checked for DS. We knew something wasn't right from the beginning. I had a terrible pregnancy and a was born with a type of blood poisoning she had contracted from me. The doctors did not have an idea of why or how. We were told it could affect her hearing and eye sight. I still hear from doctors, "You were too young to have a child with DS"I always just look at them and say nothing. started school a year late and is going to go through first grade again this year. She has progressed so much...but not enough to survive the new state curriculum. (It is tough for a typical child)But, we are thriving. She is now well, we have made it through almost a year without any major illness and her speech has really improved along with her hearing and eyesight. We now have hope that her ears may be well enough to remove any left pt tubes and repair the whole in her right eardrum. We also got a good report from the optometrist.It has been a tough year, my children have had to endure my separation from their dad and moving to a new home. But they have not only survived, but actually thrived. is a remarkable child in that she loves computers, vcrs, stereos, karaoke, and cash registers. She will work and watch until she figures her way into or out of anything. Until my boss stumbled onto the Mosaic DS website I had never even heard of another child with same condition. I had searched many libraries after we learned about her Mosaic DS and found nothing. I truly appreciate the opportunity to be able to communicate with other people who face the same or similar situations. Won't you please consider adding your personal story on the MDS website today? http://www.mosaicdownsyndrome.com*************************************************MDS MESSAGE BOARD - http://www.mosaicdownsyndrome.com/discus************************************************* Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2002 Report Share Posted September 9, 2002 Dear Helen, Boy, it sure seems like you may be on to something, and I don't really believe in accidents, so you were meant in my opinion (for what it is worth) to find the MDS site. If your general pediatrician, or family doctor does not wish to do a karotype which is a simple blood test for Trisomy 21, then go further to a genetics specialist. It sounds like there are enough traits that something could be going on to warrant the testing. I am so late in responding that I may be weeks out of the loop on this, but I am lifting you and your son Bobby up in prayer right now. I pray that your doctor has discernment in dealing with your son, and that he is lead to do what is best for your son. Perhaps you will find out he does not have MDS, but if you do, your son would certainly NOT be the oldest child ever diagnosed with this disorder. There have been adults diagnosed with MDS, and I am trying to track down the origin of an article on a brain surgeon who was diagnosed with MDS long after he was a practicing doctor. The range of abilities in folks who have MDS is pretty much the same as the range of abilities in people with DS, and some times I think, the general populace. You never quite know what to expect from any child, and MDS seemed, for me to make the questions even more diverse. Best wishes to you, and God Bless your family and especially Bobby! Barb Martz Mom to Jonas 22 mo. (MDS) & 7 introduction Hi all My name is Helen and I have a son (just turned 3) called Bobby. For some time I have been thinking he displays a few " Down's " type behaviours and suddenly last week I really noticed his eyes properly and realised he has the epicanthic fold, my partner has often commented on the basic shape of his eyes being odd. (I think I was blinded to the problems so much that I couldn't see what was right there in front of me). Bobby's behaviour has become more unusual as he has got older although he has always been extremely over affectionate we thought he would grow out of it etc etc. He has a language delay and a few other symptoms. I stumbled accidentally across www.mosaicdownsyndrome.com and it all suddenly became clear. I have noticed a few people have said their children were diagnosed quite late and I assume these are the ones with fewer physical signs than others. Basically I need more information to be armed with when we see the paediatrician in a few weeks time and I also need to get a better idea of whether or not I am really on the right track or if I am just clutching at straws and making the answers fit. I am at the end of my tether with his behaviour and very concerned for his safety as he is a real houdini and likes to roam off with no sign of fear of anyone or anything. Helen Won't you please consider adding your personal story on the MDS website today? http://www.mosaicdownsyndrome.com ************************************************* MDS MESSAGE BOARD - http://www.mosaicdownsyndrome.com/discus ************************************************* Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2002 Report Share Posted September 9, 2002 Dear , I am just reading your intro tonight, and may I say that I am so glad that you did find this group! sounds like my little guy Jonas already. He may have a straight path to somewhere, but he would rather tie himself in knots crawling under a chair rung, then under a small table and between my purse, to get to the hallway he could have easily gotten to without all the workout! Perhaps he will be tenacious in figuring things out like is. I am happy to hear that her hearing is progressing and also her eyesight. Jonas was diagnosed due to the finding of a heart murmur also, but he was diagnosed at 10 days old in the NICU. I am imagining that had to spend many days in a NICU also. For a child who is much older than mine in years, we have many things in common. Jonas was there because he was premature by 2 months. You can read his entire, and miraculous story at the www.mosacidownsyndrome.com site if you click on personal stories and go to the surname Martz. " Too young to have a child with Down syndrome... " This should tell us all that we have to trust ourselves sometimes when we get a feeling about our children, and take some of what the doctor says with a grain of salt. I was thinking that Gilda Raddner was " too young " to die from ovarian cancer too, but I seriously doubt that is of any solace to Gene Wilder. I am sorry that any of you had to go through the breakup of a marriage. That is hard for everyone. I am happy that you are here though, and I will pray that does really well with school this year, and that she continues to have improvements with her hearing and every other aspect of her development. My list of " Dear One " to pray for keeps getting longer here guys! This is a good thing though...it means we have more and more " dear ones " to bless us. Best wishes to you , and hugs to all your dear children. Barb Martz Mom to Jonas 22 mo (MDS) & 7 Introduction My name is . My oldest daughter, , turned 8 years old in May. We have known she had Mosaic DS since she was 10 months old. We just happened upon a specialist because a heart murmer was found who took one look at her and wanted us to have her checked for DS. We knew something wasn't right from the beginning. I had a terrible pregnancy and a was born with a type of blood poisoning she had contracted from me. The doctors did not have an idea of why or how. We were told it could affect her hearing and eye sight. I still hear from doctors, " You were too young to have a child with DS " I always just look at them and say nothing. started school a year late and is going to go through first grade again this year. She has progressed so much...but not enough to survive the new state curriculum. (It is tough for a typical child) But, we are thriving. She is now well, we have made it through almost a year without any major illness and her speech has really improved along with her hearing and eyesight. We now have hope that her ears may be well enough to remove any left pt tubes and repair the whole in her right eardrum. We also got a good report from the optometrist. It has been a tough year, my children have had to endure my separation from their dad and moving to a new home. But they have not only survived, but actually thrived. is a remarkable child in that she loves computers, vcrs, stereos, karaoke, and cash registers. She will work and watch until she figures her way into or out of anything. Until my boss stumbled onto the Mosaic DS website I had never even heard of another child with same condition. I had searched many libraries after we learned about her Mosaic DS and found nothing. I truly appreciate the opportunity to be able to communicate with other people who face the same or similar situations. Won't you please consider adding your personal story on the MDS website today? http://www.mosaicdownsyndrome.com ************************************************* MDS MESSAGE BOARD - http://www.mosaicdownsyndrome.com/discus ************************************************* Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2002 Report Share Posted September 9, 2002 GOD BLESS ALL POTTY TRAINING PARENTS! I AM PERSONALLY LOOKING FOR A BUY UP SERVICE TO POTTY TRAIN JONAS WHEN HE IS 3 YEARS (APPROX). SO I HAVE A YEAR TO TRY TO FIND OUT WHO (EXCEPT ME) CAN COME IN AND LIVE WITH US AND TRAIN JONAS ON MR POTTY! Can anyone read through the lines and see that was not exactly easy to potty train? Barb Martz Mom to Jonas 22 mo & 7 Introduction My name is . My oldest daughter, , turned 8 years old in May. We have known she had Mosaic DS since she was 10 months old. We just happened upon a specialist because a heart murmer was found who took one look at her and wanted us to have her checked for DS. We knew something wasn't right from the beginning. I had a terrible pregnancy and a was born with a type of blood poisoning she had contracted from me. The doctors did not have an idea of why or how. We were told it could affect her hearing and eye sight. I still hear from doctors, " You were too young to have a child with DS " I always just look at them and say nothing. started school a year late and is going to go through first grade again this year. She has progressed so much...but not enough to survive the new state curriculum. (It is tough for a typical child) But, we are thriving. She is now well, we have made it through almost a year without any major illness and her speech has really improved along with her hearing and eyesight. We now have hope that her ears may be well enough to remove any left pt tubes and repair the whole in her right eardrum. We also got a good report from the optometrist. It has been a tough year, my children have had to endure my separation from their dad and moving to a new home. But they have not only survived, but actually thrived. is a remarkable child in that she loves computers, vcrs, stereos, karaoke, and cash registers. She will work and watch until she figures her way into or out of anything. Until my boss stumbled onto the Mosaic DS website I had never even heard of another child with same condition. I had searched many libraries after we learned about her Mosaic DS and found nothing. I truly appreciate the opportunity to be able to communicate with other people who face the same or similar situations. Won't you please consider adding your personal story on the MDS website today? http://www.mosaicdownsyndrome.com ************************************************* MDS MESSAGE BOARD - http://www.mosaicdownsyndrome.com/discus ************************************************* Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2002 Report Share Posted September 9, 2002 Hi Barb and thanks for your mail. We got a letter today asking us to call the hospital to make an appointment for Bobby to see the consultant. We go on October 3rd at 9.30am !! I am so impressed that we will see a specialist so quickly as I have only recently moved to Durham (NE England) from Leicester (midlands) and had we stayed there we would have had to wait over a year for an appointment, this one has come through in 6 weeks from referal. Those in England will know how efficient that is for the NHS!! I don't know if the doctor will order the tests at the first appointment but the point is that MDS or not we are on the right road to finding out more about Bobby's problems and to getting him and ourselves the right help in dealing with him. Thanks once again to all one the list for the advice and support and I promise to keep you all posted. Helen (Bobby 3 possible MDS) introduction Hi all My name is Helen and I have a son (just turned 3) called Bobby. For some time I have been thinking he displays a few " Down's " type behaviours and suddenly last week I really noticed his eyes properly and realised he has the epicanthic fold, my partner has often commented on the basic shape of his eyes being odd. (I think I was blinded to the problems so much that I couldn't see what was right there in front of me). Bobby's behaviour has become more unusual as he has got older although he has always been extremely over affectionate we thought he would grow out of it etc etc. He has a language delay and a few other symptoms. I stumbled accidentally across www.mosaicdownsyndrome.com and it all suddenly became clear. I have noticed a few people have said their children were diagnosed quite late and I assume these are the ones with fewer physical signs than others. Basically I need more information to be armed with when we see the paediatrician in a few weeks time and I also need to get a better idea of whether or not I am really on the right track or if I am just clutching at straws and making the answers fit. I am at the end of my tether with his behaviour and very concerned for his safety as he is a real houdini and likes to roam off with no sign of fear of anyone or anything. Helen Won't you please consider adding your personal story on the MDS website today? http://www.mosaicdownsyndrome.com ************************************************* MDS MESSAGE BOARD - http://www.mosaicdownsyndrome.com/discus ************************************************* Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2006 Report Share Posted January 21, 2006 a, By all means, get a second opinion!!!! Rita G --- erozett wrote: > Hello everyone! I'm new and decided to post an > introduction. > > I'm 25 years old and was just diagnosed with Hashi's > this week. I've > been hypo for about five years now, but it has > always been easily > controlled with a small dose of synthroid. > Unfortunately, last year I > selected an HMO for my medical plan and they were > less than helpful > with the whole thyroid thing, and they ended up > pulling me completely > off my meds. > > So when a new year rolled around I specifically > chose a better medical > plan and just as soon as I could went skipping back > off to a doc. > > We did labs, and they came back with my TSH at 6.02 > (her normal said > .5-2.5), and my Free T4 at .96 (she didn't give me a > normal range). I > also tested positive for the Hashi's antibodies, but > I didn't get any > of those numbers. > > But I am now concerned because the doctor has > decided not to treat it > at all. She would rather not start meds, but > instead re-draw labs in > three and six months, then re-evaluate at the end of > the six months. > Is this normal? I do show many of the symptoms, > including an enlarged > thyroid, sluggishness, inability to lose weight > (even with strict diet > and exercize), etc. > > I have an apointment on Monday morning to discuss > this further. I am > not sure if I want to push the medication issue with > this doctor, or > if I should maybe look for a different doctor or see > an Endo. Is > sitting on this for another six months really a good > idea? > > I'm looking forward to catching up on previous > messages and learning > as much as possible. > > -a > > > > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2006 Report Share Posted January 21, 2006 You really need to ask her why on earth, if the TSH shows you as being Hypothyroid and you Have Hashi's, which is not going to get better by itself and will only get worse, and you have symtoms of Hypothyroidism, does she NOT want to TREAT you? Its awfully like be dx'd with cancer and being told we are just going to watch and wait..no point in treating you until it spreads everywhere!!!!!! If she won't treat you find another Doctor ASAP. laura c. Introduction Hello everyone! I'm new and decided to post an introduction.I'm 25 years old and was just diagnosed with Hashi's this week. I'vebeen hypo for about five years now, but it has always been easilycontrolled with a small dose of synthroid. Unfortunately, last year Iselected an HMO for my medical plan and they were less than helpfulwith the whole thyroid thing, and they ended up pulling me completelyoff my meds.So when a new year rolled around I specifically chose a better medicalplan and just as soon as I could went skipping back off to a doc.We did labs, and they came back with my TSH at 6.02 (her normal said.5-2.5), and my Free T4 at .96 (she didn't give me a normal range). Ialso tested positive for the Hashi's antibodies, but I didn't get anyof those numbers.But I am now concerned because the doctor has decided not to treat itat all. She would rather not start meds, but instead re-draw labs inthree and six months, then re-evaluate at the end of the six months. Is this normal? I do show many of the symptoms, including an enlargedthyroid, sluggishness, inability to lose weight (even with strict dietand exercize), etc.I have an apointment on Monday morning to discuss this further. I amnot sure if I want to push the medication issue with this doctor, orif I should maybe look for a different doctor or see an Endo. Issitting on this for another six months really a good idea?I'm looking forward to catching up on previous messages and learningas much as possible.-a Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2006 Report Share Posted January 21, 2006 hi erica, if i were you i would look for a new doc, an endo if possible. you need a really good doc who will treat you properly. if you have to twist her arm to even start meds i would be leary of her monitoring you and making necessary med adjustments when needed. i had the wrong doc at one time that took me off my meds for 2 weeks and my TSH went to 73.....since then its been a 3 yr rollercoaster ride.....run to another doc. -- Re: Introduction You really need to ask her why on earth, if the TSH shows you as being Hypothyroid and you Have Hashi's, which is not going to get better by itself and will only get worse, and you have symtoms of Hypothyroidism, does she NOT want to TREAT you? Its awfully like be dx'd with cancer and being told we are just going to watch and wait..no point in treating you until it spreads everywhere!!!!!! If she won't treat you find another Doctor ASAP. laura c. Introduction Hello everyone! I'm new and decided to post an introduction.I'm 25 years old and was just diagnosed with Hashi's this week. I'vebeen hypo for about five years now, but it has always been easilycontrolled with a small dose of synthroid. Unfortunately, last year Iselected an HMO for my medical plan and they were less than helpfulwith the whole thyroid thing, and they ended up pulling me completelyoff my meds.So when a new year rolled around I specifically chose a better medicalplan and just as soon as I could went skipping back off to a doc.We did labs, and they came back with my TSH at 6.02 (her normal said.5-2.5), and my Free T4 at .96 (she didn't give me a normal range). Ialso tested positive for the Hashi's antibodies, but I didn't get anyof those numbers.But I am now concerned because the doctor has decided not to treat itat all. She would rather not start meds, but instead re-draw labs inthree and six months, then re-evaluate at the end of the six months. Is this normal? I do show many of the symptoms, including an enlargedthyroid, sluggishness, inability to lose weight (even with strict dietand exercize), etc.I have an apointment on Monday morning to discuss this further. I amnot sure if I want to push the medication issue with this doctor, orif I should maybe look for a different doctor or see an Endo. Issitting on this for another six months really a good idea?I'm looking forward to catching up on previous messages and learningas much as possible.-a Copyright ©2003 LongBraid Designs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2006 Report Share Posted January 23, 2006 If you're having symptoms, then push the medication issue! Emphasize your symptoms, and that you were doing much better on Synthroid before. If that doctor won't treat you, then get a second opinion. I'm shocked your HMO would take you off a medication that was working! What was their rationale? > > > Hello everyone! I'm new and decided to post an > > introduction. > > > > I'm 25 years old and was just diagnosed with Hashi's > > this week. I've > > been hypo for about five years now, but it has > > always been easily > > controlled with a small dose of synthroid. > > Unfortunately, last year I > > selected an HMO for my medical plan and they were > > less than helpful > > with the whole thyroid thing, and they ended up > > pulling me completely > > off my meds. > > > > So when a new year rolled around I specifically > > chose a better medical > > plan and just as soon as I could went skipping back > > off to a doc. > > > > We did labs, and they came back with my TSH at 6.02 > > (her normal said > > .5-2.5), and my Free T4 at .96 (she didn't give me a > > normal range). I > > also tested positive for the Hashi's antibodies, but > > I didn't get any > > of those numbers. > > > > But I am now concerned because the doctor has > > decided not to treat it > > at all. She would rather not start meds, but > > instead re-draw labs in > > three and six months, then re-evaluate at the end of > > the six months. > > Is this normal? I do show many of the symptoms, > > including an enlarged > > thyroid, sluggishness, inability to lose weight > > (even with strict diet > > and exercize), etc. > > > > I have an apointment on Monday morning to discuss > > this further. I am > > not sure if I want to push the medication issue with > > this doctor, or > > if I should maybe look for a different doctor or see > > an Endo. Is > > sitting on this for another six months really a good > > idea? > > > > I'm looking forward to catching up on previous > > messages and learning > > as much as possible. > > > > -a > > > > > > > > > > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2009 Report Share Posted January 29, 2009 Hi everyone. I'm new to this group. I'm 56 yrs. & diagnosed with RA (rheumatoid arthritis) almost 1 yr. ago. I have read some in The Miracle of MSM the Natural Solution for Pain. We (dh & I) have no experience with MSM or DMSO. But the dh is going shopping at Whole Foods today after work & I'm wondering if WF carries a good quality brand of MSM (crystals, gels, lotions etc.). Is this something we should order online? A band name or websites would be very helpful. Thanks, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2009 Report Share Posted January 29, 2009 Have you looked into CMO (cetylmyristoleate), there seems to be quite a bit of anecdotal evidence for it. ( " The plural of anecdote is data " ) http://www.fmsyndrome.com/feedback.html > > Hi everyone. I'm new to this group. I'm 56 yrs. & diagnosed with RA > (rheumatoid arthritis) almost 1 yr. ago. > I have read some in The Miracle of MSM the Natural Solution for Pain. > We (dh & I) have no experience with MSM or DMSO. But the dh is going > shopping at Whole Foods today after work & I'm wondering if WF carries > a good quality brand of MSM (crystals, gels, lotions etc.). > Is this something we should order online? A band name or websites would > be very helpful. > > Thanks, > Quote Link to comment Share on other sites More sharing options...
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