Guest guest Posted April 20, 2001 Report Share Posted April 20, 2001 Hi Welcome to the group. You've found a great place, and as you've mentioned, you learn so much from here. My son Adam, is 8 and in Grade 3 here in Canada. He is terribly small compared to his peers but I can honestly say that what the other kids say is not an issue. First, most of " our " kids seem to have these incredibly resilient personalities, which I have always felt was God's gift to them. They are also extremely warm and affectionate which pulls on the heart strings of whomever they meet. Those two things combined make them irresistible!! I can not begin to even count how many times I have heard someone say " he is so cute " when referring to Adam. Supermarket, school, Church, you name it, I hear it. Part of their resilience comes from this ability to stand up for themselves. Adam doesn't have problems with his peers, but often with adults. They don't mean any harm but I have often heard an adult say " you are such a polite little boy " or " you are such a cute little boy " (the key word being little) and these people mean well. But Adam will very firmly say " I am NOT little I am 8 " and that's that. He doesn't seem to carry any type of stigma from that but is very (I mean very!!) outspoken when he wants or needs something. He is not shy to tell someone exactly what he thinks--and he believes he has every right to correct people and then it's forgotten. I can't describe it any better than that. But that is definitely not our worry. Time will tell for you, but I bet some of the phrases I've used above to describe Adam, you were probably nodding your head and saying " same as my son " . They all seem to be terrific, special kids. Take everything one day at a time is my best advice. Being a teacher, I would add that it probably isn't a good idea to keep him back a year. I know exactly what you are saying, I was offered the same when Adam was in J.K. (age 4) to be held back a second year. Everyone at the school said due to his size he wouldn't " stand out " (which is true). I was worried he would be bored a second time through the curriculum and didn't keep him back. I am so glad I didn't!!! Now that he is older, age is something all the kids talk about. Yes he is the smallest but he can say " I am 8 too!! " if he had to say " I am 9 " and the others were 8; he'd probably then feel really " different " . He's the same age as all his peers and, for kids, age is the comparison (more than size)! Just my humble opinion, but our school system is a firm believer in age appropriate placements. Now if in your school system it is common to " repeat " grades or start late, well then he has a chance of not being the only kid a year older than everyone else and yet, much smaller. Good luck on your journey. And please write often with any questions, comments etc. etc. you may have. Debby wilkinsonz@... wrote: > Hello, > > My name is Wilkinson, and I'm a new member of this group > (thanks to our friends and Finlay here in Wellington, NZ). Our > son Tyler was born on 1/29/99 at 31 weeks with severe IUGR. He > weighed 1 lb 8 oz and was 12 " long - very scary start to life, but we > are happy to say that he is a very healthy, happy little boy now and > our only concern is his growth/weight. > > He was " supposed " to catch up by age 2, but it's now apparent that > that did not happen! He's still under the 3rd percentile at 31.5 " > tall and 18.5 lbs. We've seen a pediatric endocrinologist who has > performed several tests, although we won't know the results for a > couple of months. Regardless of whether he has RSS, the doctor made > it pretty clear that he thought that Tyler will most likely start on > GHT sometime this year. > > I'm really glad we've found this group because I've already learned a > bit through reading lots and lots of messages. We discontinued the > Periactin because Tyler's appetite didn't seem to be affected at > all. Thanks to your messages, I'm now determined to give it another > really good chance. > > Apart from the medical intervention, I'm most concerned with how > he'll be affected at school. At age 2, he and the other kids are > still unaware that Tyler is " different. " But by age 3 (when he > starts kindergarten here in New Zealand), I'm worried that his > personality might be affected by what other people say. > > Does anyone have any experience or advice about the pros and cons of > holding children back a year at school? By his " due date " he would > be one of the youngest children in the class if we don't hold him > back. But based on his actual birthdate, they might be reluctant to > keep him back. It might seem early to start thinking about it now, > but he'll start kindergarten in 8 months. > > My husband is a New Zealander, but I'm American (with parents in > Milwaukee) - so hopefully, next year we'll be able to plan a trip to > Chicago to go to the annual MAGIC convention. 25 hours on a plane > with two small children is not very fun - but it sounds like it would > be well worth it!!! > > Many thanks, > > (mom to Tyler, 2 (IUGR/RSS?) and , 10 months) > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2001 Report Share Posted April 20, 2001 , My son Storm is the youngest in his Kindergarten class. Sept. 1 is the cut-off date and he turned 5 Aug. 28th so barely made it! We seriously considered waiting, but his pre-K teacher assured us that he was ready. He is a really smart little guy and Although he is younger and smaller has kept up quite well! Just thought I would let you know! Glad to have you aboard! Carmen, Mom to Storm, 5yr7mo. 30 lbs.(I hope) and 39 " , RSS, zantac, periactin and hopefully gh soon! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2001 Report Share Posted April 20, 2001 , My son Storm is the youngest in his Kindergarten class. Sept. 1 is the cut-off date and he turned 5 Aug. 28th so barely made it! We seriously considered waiting, but his pre-K teacher assured us that he was ready. He is a really smart little guy and Although he is younger and smaller has kept up quite well! Just thought I would let you know! Glad to have you aboard! Carmen, Mom to Storm, 5yr7mo. 30 lbs.(I hope) and 39 " , RSS, zantac, periactin and hopefully gh soon! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 2001 Report Share Posted April 21, 2001 Hi, ! Welcome to our group. I hope that you are able to find answers to some of your questions and the support that you are seeking. We can be a lively bunch, so I am sure you will learn a lot. It does not matter if Tyler has RSS or not. It appears you are facing some of the same issues as we do and the " answers/solutions/support " are the same no matter what. Since you have been reading the posts for a bit of time, you probably already know that I am one of the " senior " members of the group, with a son Maxwell who is almost 13. (I cannot believe it!!!!!) We have been through a lot with Max, some related to RSS and some not. I am also a special ed teacher, so I can look at a lot of issues from another point of view as well. You have posed a question that many of us have asked regarding whether or not to hold back our child from kindergarten. I don't know what things are like in New Zealand; however, here, in the US, it is a major trend whether or not the child is small or IUGR or RSS or whatever. We did not hold our now 15 year old daughter back when she was ready for kindergarten (by age). She was starting to read, able to separate and we knew she would be one of the youngest because of her August birthday, but we thought it did not matter. I have to tell you - we made a big mistake. She could have used that extra year to mature a little bit. She also HATES it that she is one of the youngest and will be the last to drive. I have to admit that she would have been better off in many areas if we had just held off for one measly year. As for Max, we did the right thing. We waited that extra year.. It was a good thing. He is still the smallest in his grade, but he is a bit immature, so his behavior is better tolerated among his classmates. I look at the kids that he would have been in school with if we had not waited and he never would have fit in. But because of his older age, he will be the first to do some major things in his life (bar mitzvah, driving, voting, ect.), so that will help his self-esteem a bit. Does he get teased about his size? Not really. He never really has, to my knowledge. The kids see that he is smaller, but they are used to it. The issues while he was in public school (I forgot to tell you that we moved him to a private school when he was in 4th grade because of educational issues) were more because of behavior/learning, not size. Max had ADHD. I don't want to go on any longer because this post is lengthy enough as is. If you have more questions, please feel free to ask. I am pretty open about our experiences. Just keep one thing in mind - there is no real right or wrong answer. Follow your heart. And there is usually a way to correct any mistake that is made along the way. Jodi New Member > Hello, > > My name is Wilkinson, and I'm a new member of this group > (thanks to our friends and Finlay here in Wellington, NZ). Our > son Tyler was born on 1/29/99 at 31 weeks with severe IUGR. He > weighed 1 lb 8 oz and was 12 " long - very scary start to life, but we > are happy to say that he is a very healthy, happy little boy now and > our only concern is his growth/weight. > > He was " supposed " to catch up by age 2, but it's now apparent that > that did not happen! He's still under the 3rd percentile at 31.5 " > tall and 18.5 lbs. We've seen a pediatric endocrinologist who has > performed several tests, although we won't know the results for a > couple of months. Regardless of whether he has RSS, the doctor made > it pretty clear that he thought that Tyler will most likely start on > GHT sometime this year. > > I'm really glad we've found this group because I've already learned a > bit through reading lots and lots of messages. We discontinued the > Periactin because Tyler's appetite didn't seem to be affected at > all. Thanks to your messages, I'm now determined to give it another > really good chance. > > Apart from the medical intervention, I'm most concerned with how > he'll be affected at school. At age 2, he and the other kids are > still unaware that Tyler is " different. " But by age 3 (when he > starts kindergarten here in New Zealand), I'm worried that his > personality might be affected by what other people say. > > Does anyone have any experience or advice about the pros and cons of > holding children back a year at school? By his " due date " he would > be one of the youngest children in the class if we don't hold him > back. But based on his actual birthdate, they might be reluctant to > keep him back. It might seem early to start thinking about it now, > but he'll start kindergarten in 8 months. > > My husband is a New Zealander, but I'm American (with parents in > Milwaukee) - so hopefully, next year we'll be able to plan a trip to > Chicago to go to the annual MAGIC convention. 25 hours on a plane > with two small children is not very fun - but it sounds like it would > be well worth it!!! > > Many thanks, > > (mom to Tyler, 2 (IUGR/RSS?) and , 10 months) > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2001 Report Share Posted April 25, 2001 Warm welcome to the group!!!! My daughter is 2 1/2 and we often have to change her combo of meds. Seems like they just stop working so we alter the combo a bit. I have been told that there is a chance her body will stop responding to what is available as far as antihistimines and if things don't change she will have to be put back on Prednisolne and that I REFUSE to do!! I wish you the best in the search for your cause. ~Alena's Mom new member > > ----- Original Message ----- > > To: > Sent: Wednesday, April 25, 2001 12:21 PM > > > > Hi > > > > I too have hives (5 years now) and I am glad to find this site. > > I get hives twice a year between thanksgiving and christmas and the last > > week of march > > and the first 10 days of april. I itch on my scalp and extremities for > > a week without seeing > > any hives and then in 24 hours I progress from seeing small hives to > > giant hives with > > angioedema. I have had to use an epi pen because I had sunburn and didn't > > realize I had > > hives too. > > I have gone through every antihistamine, I can think of and it doesn't > > even touch it. So > > prednisone is the only thing that works but this last time I was on 40 > > mg and broke > > through and started progressing. 60 mg worked and now I am almost off > > the prednisone > > (yeh!) > > > > I also that anH2 blocker but I am not sure it is working, but it helps > > my stomach from the > > prednisone > > > > I am lucky it is not year round as some are. > > > > I have gone through the fifty tests and the biopsy too. I have a mildly > > elevated ANA and a > > positive C reactive protien. I still don't understand all the physiology > > and pathophysiology, > > but I haven't worked on it much. I am graduating from school with my > > masters. I will now > > that I am getting out. > > > > The allergy doctor that I have says it is one of those diseases no one > > likes to treat because > > the treatments tend to quit working. Has any one tried to rotate > antihistamines > > regularly to > > decrease tolerance? > > > > It seems to me that we have enough information to make a data bank on > > symptoms, > > treatments, and disease course, which is more than I have seen in the > > medical literature. > > I don't know how to do that (data base) but it would sure be interesting > > to see case > > studies > > > > Also I have read of anyone using beta-adrenergic drugs like terbutaline > > and what the > > results are from article in the Journal of Allergy and Clinical Immunology > > Dec. 1996 part > > 3, Vol 98 number 6 Chronic urticaria: Pathophysiology and treatment > approaches > > by > > Tharp MD. > > > > I have a medical background and a really personal interest in this. > > > > Thank you for listening > > > > Eileen Reilly- FNP almost > > > > -- > > eileen mitchell > > eileenmitchell@... - email > > x7209 - voicemail/fax > > > > > > > > __________________________________________________ > > FREE voicemail, email, and fax...all in one place. > > Sign Up Now! http://www.onebox.com > > > > > > > > ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ > If you do wish to unsubscribe then you can click on the following link: > <mailto:urticaria-unsubscribeegroups> > ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ > > This list is in the service of those who suffer from Chronic Urticaria (hives). We strive to support and lift each other as a worldwide cyber-family. > > We share whatever needs to be shared to help one another in our struggle with Chronic Urticria. > > Any posting that is off the main topic of Chronic Urticaria, we post with a prefix of NCU -. This is done out of respect for those who do not wish to read such postings. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2001 Report Share Posted April 25, 2001 Warm welcome to the group!!!! My daughter is 2 1/2 and we often have to change her combo of meds. Seems like they just stop working so we alter the combo a bit. I have been told that there is a chance her body will stop responding to what is available as far as antihistimines and if things don't change she will have to be put back on Prednisolne and that I REFUSE to do!! I wish you the best in the search for your cause. ~Alena's Mom new member > > ----- Original Message ----- > > To: > Sent: Wednesday, April 25, 2001 12:21 PM > > > > Hi > > > > I too have hives (5 years now) and I am glad to find this site. > > I get hives twice a year between thanksgiving and christmas and the last > > week of march > > and the first 10 days of april. I itch on my scalp and extremities for > > a week without seeing > > any hives and then in 24 hours I progress from seeing small hives to > > giant hives with > > angioedema. I have had to use an epi pen because I had sunburn and didn't > > realize I had > > hives too. > > I have gone through every antihistamine, I can think of and it doesn't > > even touch it. So > > prednisone is the only thing that works but this last time I was on 40 > > mg and broke > > through and started progressing. 60 mg worked and now I am almost off > > the prednisone > > (yeh!) > > > > I also that anH2 blocker but I am not sure it is working, but it helps > > my stomach from the > > prednisone > > > > I am lucky it is not year round as some are. > > > > I have gone through the fifty tests and the biopsy too. I have a mildly > > elevated ANA and a > > positive C reactive protien. I still don't understand all the physiology > > and pathophysiology, > > but I haven't worked on it much. I am graduating from school with my > > masters. I will now > > that I am getting out. > > > > The allergy doctor that I have says it is one of those diseases no one > > likes to treat because > > the treatments tend to quit working. Has any one tried to rotate > antihistamines > > regularly to > > decrease tolerance? > > > > It seems to me that we have enough information to make a data bank on > > symptoms, > > treatments, and disease course, which is more than I have seen in the > > medical literature. > > I don't know how to do that (data base) but it would sure be interesting > > to see case > > studies > > > > Also I have read of anyone using beta-adrenergic drugs like terbutaline > > and what the > > results are from article in the Journal of Allergy and Clinical Immunology > > Dec. 1996 part > > 3, Vol 98 number 6 Chronic urticaria: Pathophysiology and treatment > approaches > > by > > Tharp MD. > > > > I have a medical background and a really personal interest in this. > > > > Thank you for listening > > > > Eileen Reilly- FNP almost > > > > -- > > eileen mitchell > > eileenmitchell@... - email > > x7209 - voicemail/fax > > > > > > > > __________________________________________________ > > FREE voicemail, email, and fax...all in one place. > > Sign Up Now! http://www.onebox.com > > > > > > > > ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ > If you do wish to unsubscribe then you can click on the following link: > <mailto:urticaria-unsubscribeegroups> > ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ > > This list is in the service of those who suffer from Chronic Urticaria (hives). We strive to support and lift each other as a worldwide cyber-family. > > We share whatever needs to be shared to help one another in our struggle with Chronic Urticria. > > Any posting that is off the main topic of Chronic Urticaria, we post with a prefix of NCU -. This is done out of respect for those who do not wish to read such postings. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2001 Report Share Posted April 25, 2001 Warm welcome to the group!!!! My daughter is 2 1/2 and we often have to change her combo of meds. Seems like they just stop working so we alter the combo a bit. I have been told that there is a chance her body will stop responding to what is available as far as antihistimines and if things don't change she will have to be put back on Prednisolne and that I REFUSE to do!! I wish you the best in the search for your cause. ~Alena's Mom new member > > ----- Original Message ----- > > To: > Sent: Wednesday, April 25, 2001 12:21 PM > > > > Hi > > > > I too have hives (5 years now) and I am glad to find this site. > > I get hives twice a year between thanksgiving and christmas and the last > > week of march > > and the first 10 days of april. I itch on my scalp and extremities for > > a week without seeing > > any hives and then in 24 hours I progress from seeing small hives to > > giant hives with > > angioedema. I have had to use an epi pen because I had sunburn and didn't > > realize I had > > hives too. > > I have gone through every antihistamine, I can think of and it doesn't > > even touch it. So > > prednisone is the only thing that works but this last time I was on 40 > > mg and broke > > through and started progressing. 60 mg worked and now I am almost off > > the prednisone > > (yeh!) > > > > I also that anH2 blocker but I am not sure it is working, but it helps > > my stomach from the > > prednisone > > > > I am lucky it is not year round as some are. > > > > I have gone through the fifty tests and the biopsy too. I have a mildly > > elevated ANA and a > > positive C reactive protien. I still don't understand all the physiology > > and pathophysiology, > > but I haven't worked on it much. I am graduating from school with my > > masters. I will now > > that I am getting out. > > > > The allergy doctor that I have says it is one of those diseases no one > > likes to treat because > > the treatments tend to quit working. Has any one tried to rotate > antihistamines > > regularly to > > decrease tolerance? > > > > It seems to me that we have enough information to make a data bank on > > symptoms, > > treatments, and disease course, which is more than I have seen in the > > medical literature. > > I don't know how to do that (data base) but it would sure be interesting > > to see case > > studies > > > > Also I have read of anyone using beta-adrenergic drugs like terbutaline > > and what the > > results are from article in the Journal of Allergy and Clinical Immunology > > Dec. 1996 part > > 3, Vol 98 number 6 Chronic urticaria: Pathophysiology and treatment > approaches > > by > > Tharp MD. > > > > I have a medical background and a really personal interest in this. > > > > Thank you for listening > > > > Eileen Reilly- FNP almost > > > > -- > > eileen mitchell > > eileenmitchell@... - email > > x7209 - voicemail/fax > > > > > > > > __________________________________________________ > > FREE voicemail, email, and fax...all in one place. > > Sign Up Now! http://www.onebox.com > > > > > > > > ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ > If you do wish to unsubscribe then you can click on the following link: > <mailto:urticaria-unsubscribeegroups> > ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ > > This list is in the service of those who suffer from Chronic Urticaria (hives). We strive to support and lift each other as a worldwide cyber-family. > > We share whatever needs to be shared to help one another in our struggle with Chronic Urticria. > > Any posting that is off the main topic of Chronic Urticaria, we post with a prefix of NCU -. This is done out of respect for those who do not wish to read such postings. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2001 Report Share Posted May 4, 2001 - I won't go into a whole bunch, because Jodi does that for me!!!! I am the RSS division consultant for MAGIC, and I have a 5-year-old daughter with RSS. At 2 years old, the average weight and height (approx) for the 120 RSS kids in our networking database is about what you daughter is now - so that is good news! My daughter also does not have the 5th finger clinod., although I guesttimate that about 80% of RSS children do have it. Like with all the characteristics of RSS, some have them, some do not. MAGIC and this listserve want to provide parents of RSS children or children with undiagnosed etiology SGA/IUGR the support, emotionally and medically, that is needed. So you have found the two great places!!! If you would like more information on the networking database, please contact me and I can email you the info and questionnaire. Also, you may already know that MAGIC offers a 3-day convention in July in Chicago for all the divisions (each division is focused on a different growth disorder). Our RSS division is there in full power! On Friday, we will have Dr. Harbison (considered an RSS expert in the US) presenting for several hours on medical treatments, new info coming out in the last year, new stuff on GH, etc., and then two academic doctors will be presenting on the educational system and the RSS child - what are our rights, etc. Dr. Getch is also the parent of an RSS child. After the presentations on Friday, we will have several hours of open networking among the parents - focused on specific topics picked from ones submitted by attendees prior to the convention, and then an " open " brainstorming. Each night there are social functions, and the parents and the kids get to meet each other (tables are labeled RSS so we can " find " each other - although it isn't too hard because you can usually pick! ! the RSS kids out!). Each RSS child also has the opportunity to be evaluated by Dr. Harbison during the course of the convention, at no charge!!! If you are interested, contact MAGIC. If you would need financial support in order to attend, you can contact me privately at MagicRSS@..., as I have some scholarship monies available, and can provide you with assistance on how easy it is to fundraise the remaining money. Jodi and others will write the more important stuff, so watch for their emails! I am happy you found us, - WELCOME! Salem (, 5.3yrs, GHT & Periactin since 10/00, now a whopping 42 inches tall & almost 34 pounds). RSS-Support wrote: > Hi, my name is and I live in the Seattle area. I was referred to > this site by a friend who suggested that my 2 year old daughter may be > suffering from this condition. She was born at 30 weeks by c-section due to > severe IUGR. She weighed 1lb 6oz at birth and was 13inches long. Today she > is 2 years old, is 29 inches tall and weighs only 18lbs. In the last year > we have seen several specialist and have done lots of testing with no real > answers. We will be returning to the endo at Childrens in 3 weeks for > another bone x-ray (last one showed bone delay in her wrists). And then we > see a genetic specialist in Jun and I plan on showing the Magic Foundation > paper to them to see if she fits in the group. Even though she is a picky > eater, she does eat farely well and she doesnt have the fifth finger > clinodactly but everything else fits. She does have advanced fine motor > skills but is delayed in her gross motor skills. She has reoccuring ear > infections and her facial features fit the criteria. Not that I'm wishing > for anything to be wrong with her but it would be nice to find out what is > causing her small stature. > > I hope every one is doing fine. > > C > Want to see how our family is doing? > Visit my website > www.geocities.com/valjcox/ > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2001 Report Share Posted May 4, 2001 - I won't go into a whole bunch, because Jodi does that for me!!!! I am the RSS division consultant for MAGIC, and I have a 5-year-old daughter with RSS. At 2 years old, the average weight and height (approx) for the 120 RSS kids in our networking database is about what you daughter is now - so that is good news! My daughter also does not have the 5th finger clinod., although I guesttimate that about 80% of RSS children do have it. Like with all the characteristics of RSS, some have them, some do not. MAGIC and this listserve want to provide parents of RSS children or children with undiagnosed etiology SGA/IUGR the support, emotionally and medically, that is needed. So you have found the two great places!!! If you would like more information on the networking database, please contact me and I can email you the info and questionnaire. Also, you may already know that MAGIC offers a 3-day convention in July in Chicago for all the divisions (each division is focused on a different growth disorder). Our RSS division is there in full power! On Friday, we will have Dr. Harbison (considered an RSS expert in the US) presenting for several hours on medical treatments, new info coming out in the last year, new stuff on GH, etc., and then two academic doctors will be presenting on the educational system and the RSS child - what are our rights, etc. Dr. Getch is also the parent of an RSS child. After the presentations on Friday, we will have several hours of open networking among the parents - focused on specific topics picked from ones submitted by attendees prior to the convention, and then an " open " brainstorming. Each night there are social functions, and the parents and the kids get to meet each other (tables are labeled RSS so we can " find " each other - although it isn't too hard because you can usually pick! ! the RSS kids out!). Each RSS child also has the opportunity to be evaluated by Dr. Harbison during the course of the convention, at no charge!!! If you are interested, contact MAGIC. If you would need financial support in order to attend, you can contact me privately at MagicRSS@..., as I have some scholarship monies available, and can provide you with assistance on how easy it is to fundraise the remaining money. Jodi and others will write the more important stuff, so watch for their emails! I am happy you found us, - WELCOME! Salem (, 5.3yrs, GHT & Periactin since 10/00, now a whopping 42 inches tall & almost 34 pounds). RSS-Support wrote: > Hi, my name is and I live in the Seattle area. I was referred to > this site by a friend who suggested that my 2 year old daughter may be > suffering from this condition. She was born at 30 weeks by c-section due to > severe IUGR. She weighed 1lb 6oz at birth and was 13inches long. Today she > is 2 years old, is 29 inches tall and weighs only 18lbs. In the last year > we have seen several specialist and have done lots of testing with no real > answers. We will be returning to the endo at Childrens in 3 weeks for > another bone x-ray (last one showed bone delay in her wrists). And then we > see a genetic specialist in Jun and I plan on showing the Magic Foundation > paper to them to see if she fits in the group. Even though she is a picky > eater, she does eat farely well and she doesnt have the fifth finger > clinodactly but everything else fits. She does have advanced fine motor > skills but is delayed in her gross motor skills. She has reoccuring ear > infections and her facial features fit the criteria. Not that I'm wishing > for anything to be wrong with her but it would be nice to find out what is > causing her small stature. > > I hope every one is doing fine. > > C > Want to see how our family is doing? > Visit my website > www.geocities.com/valjcox/ > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2001 Report Share Posted May 4, 2001 Hi , Where in the Seattle area do you live? We are from Bellingham, WA and I also have a two year old. Josh was born at 38 weeks and only weighed 4lbs, 15oz and was 17 " tall. We met with a Children's geneticist in Bellingham last year at an outreach clinic. The geneticist was pretty certain that Josh has RSS, mainly because of his small stature and developmental delays. We will be meeting with the geneticist again on May 16th in Bellingham at another outreach clinic. She wanted to see Josh again to see if he had grown any or " caught up " with his peers. Who are you meeting with at Childrens? Rita (mom of Josh 2yrs old) ---------- > > To: RSS-Support > Subject: New Member > Date: Thursday, May 03, 2001 9:47 PM > > Hi, my name is and I live in the Seattle area. I was referred to > this site by a friend who suggested that my 2 year old daughter may be > suffering from this condition. She was born at 30 weeks by c-section due to > severe IUGR. She weighed 1lb 6oz at birth and was 13inches long. Today she > is 2 years old, is 29 inches tall and weighs only 18lbs. In the last year > we have seen several specialist and have done lots of testing with no real > answers. We will be returning to the endo at Childrens in 3 weeks for > another bone x-ray (last one showed bone delay in her wrists). And then we > see a genetic specialist in Jun and I plan on showing the Magic Foundation > paper to them to see if she fits in the group. Even though she is a picky > eater, she does eat farely well and she doesnt have the fifth finger > clinodactly but everything else fits. She does have advanced fine motor > skills but is delayed in her gross motor skills. She has reoccuring ear > infections and her facial features fit the criteria. Not that I'm wishing > for anything to be wrong with her but it would be nice to find out what is > causing her small stature. > > I hope every one is doing fine. > > C > Want to see how our family is doing? > Visit my website > www.geocities.com/valjcox/ > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2001 Report Share Posted May 6, 2001 Hi , Welcome to the group. Your daughter and my son, Tyler, sound very similar (born on 29 Jan 1999 at 31 weeks by c-section, 1 lb 8 oz at birth, now 18.5 lbs and 31 " at 2 years old, no curved 5th finger but several other symptoms). We're still awaiting results of the tests ... but it might be interesting to see if some of their tests come back with similar results. I'm sure you'll learn a lot in a very short time by reading about other people's experiences. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2001 Report Share Posted May 6, 2001 Hi , Welcome to the group. Your daughter and my son, Tyler, sound very similar (born on 29 Jan 1999 at 31 weeks by c-section, 1 lb 8 oz at birth, now 18.5 lbs and 31 " at 2 years old, no curved 5th finger but several other symptoms). We're still awaiting results of the tests ... but it might be interesting to see if some of their tests come back with similar results. I'm sure you'll learn a lot in a very short time by reading about other people's experiences. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2001 Report Share Posted May 6, 2001 Hi , One more quick note that I thought of after reading your webpage (great photos of your girls!) where you said that Kirsten was starting to sleep through the night at 4 months. Please read the messages on hypoglycemia - it's really important!!! We just found out about it 2 weeks ago and have now taken action (like cornstarch and night feedings). Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2001 Report Share Posted May 6, 2001 Hi , One more quick note that I thought of after reading your webpage (great photos of your girls!) where you said that Kirsten was starting to sleep through the night at 4 months. Please read the messages on hypoglycemia - it's really important!!! We just found out about it 2 weeks ago and have now taken action (like cornstarch and night feedings). Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2004 Report Share Posted April 19, 2004 Dear Renarda, Welcome to the group. These people are real, they are caring sapportive and not mention quite knowledgable. I was diagnosed with sarc in the lung in 1994 through lung biopsy . I have been sick since last Feb. I had an mri done( just noisy no big deal) which showed inflammation but all other clinal test came back normal. They just did another MRI and now that shows no more inflammation so there went the DX for NS, however I feel that this is the most logical and sensible explanation of why Ive been sick. I am text book although The Dx will not clinically declare it. I dont care it makes sense to me and if they dont want to call it NS then give me another explanation for all of this. Anyway welcome to the group and if there is anything at antime you need just log on. Kim Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2004 Report Share Posted April 19, 2004 Dear Renarda, Welcome to the group. These people are real, they are caring sapportive and not mention quite knowledgable. I was diagnosed with sarc in the lung in 1994 through lung biopsy . I have been sick since last Feb. I had an mri done( just noisy no big deal) which showed inflammation but all other clinal test came back normal. They just did another MRI and now that shows no more inflammation so there went the DX for NS, however I feel that this is the most logical and sensible explanation of why Ive been sick. I am text book although The Dx will not clinically declare it. I dont care it makes sense to me and if they dont want to call it NS then give me another explanation for all of this. Anyway welcome to the group and if there is anything at antime you need just log on. Kim Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2004 Report Share Posted April 19, 2004 -Since I have brain MRI's very 3 months I have learned to fine tune them. In the beginning, 2 yrs ago, I could pshyce myself out and visualize I was elsewhere during the procedure. But after about 5 of them I was getting more clausterphobic (mine are enclosed) One of the techs told me that that is not uncommon. There was a med. student who had several for research and didn't have a problem in the beginning but got worse as time went by. So now when I have one I take valium before hand and bring my own CD for them to play, usually Les Miserables. One trick to to have a cloth put over the cage like structure that clamps your head in plus a cushion under your knees for back support. And the biggest trick of all is NEVER open your eyes. This has made all the difference for me. Glenda -- In Neurosarcoidosis , " nadaallmon " <nadaallmon@y...> wrote: > HI MY NAME IS RENARDA. THIS IS MY FIRST TIME JOINING A SUPPORT > GROUP. I HAVE BEEN SEEING A ENDOCRINE DOCTOR AND HE INFORMED ME THAT > HE THINKS THAT I HAVE NEUROSARCOIDOSIS. I HAD SARCOIDOSIS IN MY LUNGS > ABOUT 5 YEARS AGO. (NO ONE TOLD ME UNTIL NOW THAT THIS DISEASE CAN > SHOW UP IN OTHER AREAS OF YOUR BODY). I WILL BE HAVING A MRI, FOR > THE FIRST TIME IN MY LIFE, ON JUNE 30TH. I AM VERY NERVOUS ABOUT THE > MRI. BUT I WILL BE GLAD WHEN IT IS OVER. AND I WILL KNOW IF A > NEUROSARCOID IS EXERTING PRESSURE ON MY PITUTARY GLAND IN MY BRAIN > AND CAUSING MY ADRENAL GLANDS NOT TO WORK. I HAVE BEEN TAKING CORTEF > (HYDROCORTISONE)TO REPLACE THE CORTISOL MY BODY NEEDS TO COPE WITH > PHYSICAL AND MENTAL STRESSES. I WAS TOLD THAT I MAY BE TAKING CORTEF > FOR THE REST OF MY LIFE. THIS HAS BEEN A VERY TRYING TIME FOR ME, I > AM ONLY 28 YEARS OLD AND I HAVE A FIVE YEAR OLD SON. I WOULD EXPECT > A SICKNESS SUCH AS THIS TO COME UPON ME AT A LATER AGE ( BECAUSE > THERE IS STILL SO MUCH THAT I WANT TO ACCOMPLISH AND THE DISEASE IS > SLOWING ME DOWN). I AM SO GLAD THAT I FOUND A PLACE WHERE I CAN VENT. > THANKS FOR LISTENING. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2004 Report Share Posted April 19, 2004 -Since I have brain MRI's very 3 months I have learned to fine tune them. In the beginning, 2 yrs ago, I could pshyce myself out and visualize I was elsewhere during the procedure. But after about 5 of them I was getting more clausterphobic (mine are enclosed) One of the techs told me that that is not uncommon. There was a med. student who had several for research and didn't have a problem in the beginning but got worse as time went by. So now when I have one I take valium before hand and bring my own CD for them to play, usually Les Miserables. One trick to to have a cloth put over the cage like structure that clamps your head in plus a cushion under your knees for back support. And the biggest trick of all is NEVER open your eyes. This has made all the difference for me. Glenda -- In Neurosarcoidosis , " nadaallmon " <nadaallmon@y...> wrote: > HI MY NAME IS RENARDA. THIS IS MY FIRST TIME JOINING A SUPPORT > GROUP. I HAVE BEEN SEEING A ENDOCRINE DOCTOR AND HE INFORMED ME THAT > HE THINKS THAT I HAVE NEUROSARCOIDOSIS. I HAD SARCOIDOSIS IN MY LUNGS > ABOUT 5 YEARS AGO. (NO ONE TOLD ME UNTIL NOW THAT THIS DISEASE CAN > SHOW UP IN OTHER AREAS OF YOUR BODY). I WILL BE HAVING A MRI, FOR > THE FIRST TIME IN MY LIFE, ON JUNE 30TH. I AM VERY NERVOUS ABOUT THE > MRI. BUT I WILL BE GLAD WHEN IT IS OVER. AND I WILL KNOW IF A > NEUROSARCOID IS EXERTING PRESSURE ON MY PITUTARY GLAND IN MY BRAIN > AND CAUSING MY ADRENAL GLANDS NOT TO WORK. I HAVE BEEN TAKING CORTEF > (HYDROCORTISONE)TO REPLACE THE CORTISOL MY BODY NEEDS TO COPE WITH > PHYSICAL AND MENTAL STRESSES. I WAS TOLD THAT I MAY BE TAKING CORTEF > FOR THE REST OF MY LIFE. THIS HAS BEEN A VERY TRYING TIME FOR ME, I > AM ONLY 28 YEARS OLD AND I HAVE A FIVE YEAR OLD SON. I WOULD EXPECT > A SICKNESS SUCH AS THIS TO COME UPON ME AT A LATER AGE ( BECAUSE > THERE IS STILL SO MUCH THAT I WANT TO ACCOMPLISH AND THE DISEASE IS > SLOWING ME DOWN). I AM SO GLAD THAT I FOUND A PLACE WHERE I CAN VENT. > THANKS FOR LISTENING. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2004 Report Share Posted April 28, 2004 Renarda, The MRI is painless and I find that if I close my eyes through it all it is better. Good luck. Cheryl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 2004 Report Share Posted May 12, 2004 Welcome to the group. I also have not been diagnosed with neurosarc but the people in this group are great at helping with information and support. Have a good day PJ NEW MEMBER HI Everyone !! I am a new member here...My name is Joleen. I was diagnosed with Sarcoidosis about a year ago... I'm hoping I can learn alot about this from those of you whom have had this for some time. Even though I don't have Neurosarcoidosis, I'm hoping I can still join this group and learn from others. I feel the more info I can get the better aware I am... so, I'd like to say a big "HELLO" To everyone out there !! j:) MSN Toolbar provides one-click access to Hotmail from any Web page – FREE download! ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityLive Group Chat:-Mondays & Fridays 10pm EST USAhttp://health.groups.yahoo.com/group/Neurosarcoidosis/chat.phpMessage Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 5, 2004 Report Share Posted July 5, 2004 Hi I just joined today so I thought I would say hi to everyone. please excuse the yahoo name " Drdoom " it is my sons. He loves comic books although I have met several doctors over the past year that would fit that name also. I was diagnosed with neurosarcoidosis one year ago. It was a nightmare of a misdiagnosis and changing doctors, multiple hospitalizations and cranial nerve palsys, double vision and everything that goes with neurosarcoidosis. I currently have a great neuro doctor who I am forever greatful in helping me. I currently still take prednisone (which I really really hate) and I also take Immuron as an imune suppressor . I would really like to hear from others with this disease as I do not know a single person with it. My aunt has sarcoidosis in her lungs but no neuro. I have had several bouts of headaches that last weeks and then go away. Anyone else had that? Of course the last time I had an MRI to be sure and it was just a side effect headache thank goodness. My neuro was diagnosed through symptoms, MRI and spinal taps. Love that angiotension enzyme. I find it hard to believe how many diagnostic tests a person can undergo in a few days. I had 4 CT scans, 4 MRI, 1 spinal tap, 1 bone scan, 1 angiogram and a chest x ray. Followed three weeks later by more MRI and another spinal tap. I must have donated at least 2 gallons of blood to the lab. I would love to hear from fellow mis-diagnosed patients. (My orignal family physician told me I was just fat and had high blood pressure and neck and back pain from my weight). Of course I fired him since it ended up I had meningitis and vasculitis. Anyway I seem to be rambling. Would love to hear from anyone out there. Is everyone in some type of remission or has anyone had reoccurrance of symptoms? Thanks Quote Link to comment Share on other sites More sharing options...
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