Guest guest Posted October 16, 2001 Report Share Posted October 16, 2001 Hi , Welcome to the group. I am sorry to hear you have suffered with solar urticaria for so long. My daughter suffers from cold urticaria (and a host of others) and I think anything involving the weather is so hard to escape. What meds are you on? Love, ~Alena's Mom New Member > Hi everyone, > I have just finally found you. I have suffered from what the doctors call > " solar urticaria " for 13 years give or take a few, trying to get a > diagnosis. I am curious if there is anyone else here with the same thing > and what they do to cope. I've made many adustments in my life as I'm sure > you all have, but sometimes it still gets the better of me. > > > > > ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ > If you do wish to unsubscribe then you can click on the following link: > 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. Information provided in this forum is not to be taken as medical advice. Always consult your health professional before trying anything new. > > 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 October 16, 2001 Report Share Posted October 16, 2001 Hi , Welcome to the group. I am sorry to hear you have suffered with solar urticaria for so long. My daughter suffers from cold urticaria (and a host of others) and I think anything involving the weather is so hard to escape. What meds are you on? Love, ~Alena's Mom New Member > Hi everyone, > I have just finally found you. I have suffered from what the doctors call > " solar urticaria " for 13 years give or take a few, trying to get a > diagnosis. I am curious if there is anyone else here with the same thing > and what they do to cope. I've made many adustments in my life as I'm sure > you all have, but sometimes it still gets the better of me. > > > > > ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ > If you do wish to unsubscribe then you can click on the following link: > 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. Information provided in this forum is not to be taken as medical advice. Always consult your health professional before trying anything new. > > 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 October 16, 2001 Report Share Posted October 16, 2001 Hello and welcome, I have solar urticaria (among others) and I live in sunny California, having moved here from Texas (dreaming of Alaska), I stay out of the sun, if I have to go somewhere I take a towel with me in the car and cover any exposed skin, like if the sun is shining on my arm and if the sun is coming in the car on the drivers side window (my window) then I lower the window and put the towel in it and roll it back up to protect myself from it's rays. (if it comes to a ticket or a hive, I'll take the ticket). I'm currently looking to buy a parasol, a pretty one.... Cara, Cara's Poetry Cove http://www.snowcrest.net/cara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 2001 Report Share Posted October 16, 2001 Hello and welcome, I have solar urticaria (among others) and I live in sunny California, having moved here from Texas (dreaming of Alaska), I stay out of the sun, if I have to go somewhere I take a towel with me in the car and cover any exposed skin, like if the sun is shining on my arm and if the sun is coming in the car on the drivers side window (my window) then I lower the window and put the towel in it and roll it back up to protect myself from it's rays. (if it comes to a ticket or a hive, I'll take the ticket). I'm currently looking to buy a parasol, a pretty one.... Cara, Cara's Poetry Cove http://www.snowcrest.net/cara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2001 Report Share Posted December 9, 2001 Welcome, ! It's nice to have someone else from Dr. Schirmer here and contributing! In Charlottesville, VA Roux-en-Y with Gall Bladder Removal: March 31, 1999, 318 lb. July 26, 2001 -- 194 5'6.5 " Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2001 Report Share Posted December 21, 2001 , I have a 13 year-old daughter,, We also live in MD, Close to Towson.Her Email is stephanie2@... New Member Hello, my name is and I am a new member to this group. My 23 month old son (Reece) just got diagnosed with RSS. He was suspected to have some form of Dwarfism in-utero but we just found out this month a specific diagnosis. He was born at 31 weeks weighing 1 pound 6 ounces 12 inches long. He stayed in the NICU for 12 weeks and came home at 3 pounds 15 ounces. He now weighs approximately 19 pounds and is about 31 inches tall. Reece is the light of our family and has a very special personality. He has not had any problems with feeding but jsut does not gain weight. We need to find an Endocrinologist in the land/D.C. area. Does anyone know of a good doc? Is anyone living in the land area? We live in Lutherville, MD (real close to Towson). I am glad to have found this group and will be reading as much as possible. Look forward to talking with you, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2001 Report Share Posted December 21, 2001 , I am so glad that you have decided to join us here! (I'm the Jodi who responded to your email to MAGIC.) You are going to find a great group of people here, although the list may be quiet for a few days because of the Christmas season. Hang in there, though. You'll have lots of new friends fast enough! Again, please let me know if I can help you in any way. Jodi > >Reply-To: RSS-Support >To: RSS-Support >Subject: New Member >Date: Thu, 20 Dec 2001 23:54:00 -0000 > >Hello, my name is and I am a new member to this group. My 23 >month old son (Reece) just got diagnosed with RSS. He was suspected >to have some form of Dwarfism in-utero but we just found out this >month a specific diagnosis. He was born at 31 weeks weighing 1 pound >6 ounces 12 inches long. He stayed in the NICU for 12 weeks and came >home at 3 pounds 15 ounces. He now weighs approximately 19 pounds >and is about 31 inches tall. Reece is the light of our family and >has a very special personality. He has not had any problems with >feeding but jsut does not gain weight. We need to find an >Endocrinologist in the land/D.C. area. Does anyone know of a >good doc? Is anyone living in the land area? We live in >Lutherville, MD (real close to Towson). I am glad to have found this >group and will be reading as much as possible. >Look forward to talking with you, > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2001 Report Share Posted December 21, 2001 - Welcome! Your son sounds like such a blessing. And although from comparing him to peers at home he may seem small, his current size is pretty " average " for an untreated RSS child. That is good! Especially considering as you said he doesn't eat. Then again, not many general population 2-year-olds eat at all anyways!!!! HA!!! This listserve will be able to provide you with a great deal of practical and emotional support. In addition, many of us are members of the MAGIC Foundation, a large non-profit thatserves to support families with children with growth disorders. There is an RSS division with over 700 families, 250 or so current members. I am the current volunteer director. We have a new RSS brochure which has a great deal of medical information, written in layman terms. Plus,there is a library of medical articles on all types of subjects related to RSS, that members can get copies of any or all at no charge. You can find out more at www.magicfoundation.org, or email me or JodiZwain privately. Good luck!!!! Don't hestiate to ask any of us any questions whatsoever. (,age 5.11yrs, GH, 39lbs, 44 " ) > Hello, my name is and I am a new member to this group. My 23 > month old son (Reece) just got diagnosed with RSS. He was suspected > to have some form of Dwarfism in-utero but we just found out this > month a specific diagnosis. He was born at 31 weeks weighing 1 pound > 6 ounces 12 inches long. He stayed in the NICU for 12 weeks and came > home at 3 pounds 15 ounces. He now weighs approximately 19 pounds > and is about 31 inches tall. Reece is the light of our family and > has a very special personality. He has not had any problems with > feeding but jsut does not gain weight. We need to find an > Endocrinologist in the land/D.C. area. Does anyone know of a > good doc? Is anyone living in the land area? We live in > Lutherville, MD (real close to Towson). I am glad to have found this > group and will be reading as much as possible. > Look forward to talking with you, > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 26, 2001 Report Share Posted December 26, 2001 Dear , We live in andria, Virginia and our 22 month old son Jake also has RSS. Locally our son is followed by our pediatrician who is also a pediatric endocrinologist. She is in the Kaiser Permanente network of doctors and her name is Dr. Christie. We also travel up to NY to see Dr. Harbison () who is considered by many people on this list to be the leading expert on RSS in the country. I believe she has over 100 RSS patients. In fact we have an appointment with Dr. Harbison (Dr. H) this Friday. Jake has also seen many specialist at Children's Hospital in DC for various reasons, so please let me know if you need any additional referrals. (I am posting from another computer, but can normally be reached at alisonhoward@...) We don't live too far away, so maybe we can meet sometime. Best wishes, Alison (Jake, 22 months, 18 pounds) > Hello, my name is and I am a new member to this group. My 23 > month old son (Reece) just got diagnosed with RSS. He was suspected > to have some form of Dwarfism in-utero but we just found out this > month a specific diagnosis. He was born at 31 weeks weighing 1 pound > 6 ounces 12 inches long. He stayed in the NICU for 12 weeks and came > home at 3 pounds 15 ounces. He now weighs approximately 19 pounds > and is about 31 inches tall. Reece is the light of our family and > has a very special personality. He has not had any problems with > feeding but jsut does not gain weight. We need to find an > Endocrinologist in the land/D.C. area. Does anyone know of a > good doc? Is anyone living in the land area? We live in > Lutherville, MD (real close to Towson). I am glad to have found this > group and will be reading as much as possible. > Look forward to talking with you, > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2001 Report Share Posted December 30, 2001 Hi Annette, Where in California are you? I live in Fremont, about 40 miles south of San Francisco. There is a doctor at UCSF who is very knowledgable about RSS named Bruce Blumberg, a geneticist He also works at Kaiser. We also go to Stanford for my son's endos and other specialists. If you have any questions about them, let me know. (Mom to n, 17 months, 14 lbs.) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2001 Report Share Posted December 30, 2001 Hi Annette, Where in California are you? I live in Fremont, about 40 miles south of San Francisco. There is a doctor at UCSF who is very knowledgable about RSS named Bruce Blumberg, a geneticist He also works at Kaiser. We also go to Stanford for my son's endos and other specialists. If you have any questions about them, let me know. (Mom to n, 17 months, 14 lbs.) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2002 Report Share Posted March 24, 2002 hello chrissy! welcome to our site. My name is and I have a 18 mo. old RSS boy. I am sure you will find this site helpful whether for info. or for support. Have you checked out the magic website yet? very helpful. the web address is www. magicfoundation.org. Look into the conference coming up in july. look forward to hearing more about you and madison. (mom to (non-RSS), 4, and Christian (RSS), 18 mos., 14 lbs. 27 in. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2002 Report Share Posted March 25, 2002 Chrissy, I am in NJ, but we have taken Max to CHOP when he was a baby. Perhaps I have met some of the doctors you are talking about??? Is there a chance you could travel to NYC to see Dr. H.? It would take you about two hours at the most to get there and she is an expert on RSS. The other alternative is to go to the MAGIC Convention and see her there. It's in Chicago in July. By the way, I live in MADISON, just outside of town. Coincidence, huh? And my niece's middle name is Madison. Maybe we are " destined " to meet... Jodi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2002 Report Share Posted March 25, 2002 Chrissy, I am in NJ, but we have taken Max to CHOP when he was a baby. Perhaps I have met some of the doctors you are talking about??? Is there a chance you could travel to NYC to see Dr. H.? It would take you about two hours at the most to get there and she is an expert on RSS. The other alternative is to go to the MAGIC Convention and see her there. It's in Chicago in July. By the way, I live in MADISON, just outside of town. Coincidence, huh? And my niece's middle name is Madison. Maybe we are " destined " to meet... Jodi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2002 Report Share Posted March 28, 2002 Hello , Thank you for responding to my message. When did ur son first get diagnosed with RSS? i was wondering what ur experiences in the last 18 months have been like? chrisssy cb3gnr@... wrote: hello chrissy! welcome to our site. My name is and I have a 18 mo. old RSS boy. I am sure you will find this site helpful whether for info. or for support. Have you checked out the magic website yet? very helpful. the web address is www. magicfoundation.org. Look into the conference coming up in july. look forward to hearing more about you and madison. (mom to (non-RSS), 4, and Christian (RSS), 18 mos., 14 lbs. 27 in. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2002 Report Share Posted March 30, 2002 Chrissy, Sorry it took so long to respond. Have been busy preparing for the holiday. Christian was diagnosed just recently. (I've only been on this listserve for approx. 1 1/2 mos.) The last 18 mos. has been a long road uphill. I know that we are not at the end but at least I have a diagnosis and an idea of what to expect. That's what made the first 15 mos. so hard. Going from appt. to appt. and test to test. And the fear of what the outcome of the tests were going to be. It seems that now that we have our diagnosis we have been dealing with what seems to be pretty routine toddlerish stuff (getting into the garbage, etc.). Were do you live? I am in Chicago (or a suburb thereof). Have you thought about the conference in July? It will be our first one, but I am very excited. I can't wait to be around others who understand. Do you have any other children? Again I'm sorry it took so long to respond. Hope you have a happy Easter. (mom to (non-RSS), 4, and Christian (RSS), 18 mos. and into everything! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2002 Report Share Posted March 30, 2002 Chrissy, Sorry it took so long to respond. Have been busy preparing for the holiday. Christian was diagnosed just recently. (I've only been on this listserve for approx. 1 1/2 mos.) The last 18 mos. has been a long road uphill. I know that we are not at the end but at least I have a diagnosis and an idea of what to expect. That's what made the first 15 mos. so hard. Going from appt. to appt. and test to test. And the fear of what the outcome of the tests were going to be. It seems that now that we have our diagnosis we have been dealing with what seems to be pretty routine toddlerish stuff (getting into the garbage, etc.). Were do you live? I am in Chicago (or a suburb thereof). Have you thought about the conference in July? It will be our first one, but I am very excited. I can't wait to be around others who understand. Do you have any other children? Again I'm sorry it took so long to respond. Hope you have a happy Easter. (mom to (non-RSS), 4, and Christian (RSS), 18 mos. and into everything! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2002 Report Share Posted March 30, 2002 Jodi, wow that is funny guess your right must be destiny. We can't really afford to make the trip in July because Madison requires so much attention i am only able to work 12 hrs. a week and i JUST went back to work this week, so we are pretty much living off one income. Madison gets ssi but they say my husband makes too much so they are gonna be cutting her off real soon. I would appreciate it if you could send me info. on Dr. H so i can give a call and try to make an appointment to see her. Thanks so much for your letter and i look foward to speaking with you again sometime. Chrissy magicrss3 wrote: Chrissy, I am in NJ, but we have taken Max to CHOP when he was a baby. Perhaps I have met some of the doctors you are talking about??? Is there a chance you could travel to NYC to see Dr. H.? It would take you about two hours at the most to get there and she is an expert on RSS. The other alternative is to go to the MAGIC Convention and see her there. It's in Chicago in July. By the way, I live in MADISON, just outside of town. Coincidence, huh? And my niece's middle name is Madison. Maybe we are " destined " to meet... Jodi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2002 Report Share Posted March 30, 2002 Chrissy, Dr. Harbison's phone number is . I hope that you are able to take Madison to see her. I think you will be very happy with her methods and treatment. She is direct, to the point and for the kids all the way. Her bedside manner has needed work in the past, but I think she is really trying to soften her ways these days. I'll be taking Max to see her on Friday. If you would like Dr. H.'s email address, please email me privately and I will give it to you. She does not mind receiving emails from parents - especially those who are willing to try to get to her. In fact, she would probably prefer it so that she can get as much info in advance as possible. My email address is magicrss@.... I know that the whole email address will not be printed on this message. It is magicrss @ hotmail. Let's see if it works that way. There must be some way to beat the system! Jodi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2002 Report Share Posted April 1, 2002 , We were thinking about the confrence but we really don't have the money. I am going to give Dr. harbison a call tomorrow and see what happens. I have a son also his name is louis Jr and he is 2 1/2 and into everything. He keeps me on my toes!!! We are from philadelphia Pa. if u give me ur email address then i would be happy to send you some pictures. My address is chrissyd12479@... so how was your easter? ours was alright, i hate all the running around! Well write soon, Chrissy cb3gnr@... wrote: Chrissy, Sorry it took so long to respond. Have been busy preparing for the holiday. Christian was diagnosed just recently. (I've only been on this listserve for approx. 1 1/2 mos.) The last 18 mos. has been a long road uphill. I know that we are not at the end but at least I have a diagnosis and an idea of what to expect. That's what made the first 15 mos. so hard. Going from appt. to appt. and test to test. And the fear of what the outcome of the tests were going to be. It seems that now that we have our diagnosis we have been dealing with what seems to be pretty routine toddlerish stuff (getting into the garbage, etc.). Were do you live? I am in Chicago (or a suburb thereof). Have you thought about the conference in July? It will be our first one, but I am very excited. I can't wait to be around others who understand. Do you have any other children? Again I'm sorry it took so long to respond. Hope you have a happy Easter. (mom to (non-RSS), 4, and Christian (RSS), 18 mos. and into everything! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2002 Report Share Posted April 4, 2002 Chrissy, Were you able to get an appointment with Dr. H? I'd be interested to hear how it goes. I have never met her. We hope to see her at the conference. We are in the same boat as you: we can afford the conference (it is about 35 mi from my house), but can't afford Dr. H and NY, not just yet anyway. Our Easter was hectic. As every holiday is becoming. I'd love to see some pics of your kids. You can also post them on the group website. My email address is cb3gnr@.... Hope you have a great day. Gotta go make pbnj for the bigger child. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2002 Report Share Posted April 4, 2002 Chrissy, Were you able to get an appointment with Dr. H? I'd be interested to hear how it goes. I have never met her. We hope to see her at the conference. We are in the same boat as you: we can afford the conference (it is about 35 mi from my house), but can't afford Dr. H and NY, not just yet anyway. Our Easter was hectic. As every holiday is becoming. I'd love to see some pics of your kids. You can also post them on the group website. My email address is cb3gnr@.... Hope you have a great day. Gotta go make pbnj for the bigger child. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2002 Report Share Posted April 5, 2002 , I was able to get an appointment with Dr. H but not untill June 20th. I'm not sure how to post pics on the group page but i send them to you can u post them for me? Everyone here is sick i have strep throat for the Fith time since my daughter was born in August. Madison has a viral infection in her eyes and my son (2yrs.) has a horrible cough so i'm in real need of a vacation!!!! LOL Chrissy PS my email address is chrissyd12479@... please send me some photos cb3gnr@... wrote: Chrissy, Were you able to get an appointment with Dr. H? I'd be interested to hear how it goes. I have never met her. We hope to see her at the conference. We are in the same boat as you: we can afford the conference (it is about 35 mi from my house), but can't afford Dr. H and NY, not just yet anyway. Our Easter was hectic. As every holiday is becoming. I'd love to see some pics of your kids. You can also post them on the group website. My email address is cb3gnr@.... Hope you have a great day. Gotta go make pbnj for the bigger child. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2002 Report Share Posted July 24, 2002 Totr, When I was told that Lochie could not get a heart transplant if he had a mito disorder I was so scared for him. We waited nearly six months for the biopsy results which were inconclusive! That meant he could still be assessed for a new heart but porbably did have a mito disorder. At first I felt I didn't belong here because it wasn't absolute but now I am so glad I was able to get the support and advice. Sending you a big hug. Donna xx new member Hi, my name is Tori and my husband and I have three children. Lydia 6,beautiful and typical and Sophia 2 1/2 also beautiful and typical w/anattitude and then there is Mr. Noah. He is 11 months and just gorgeousbut not typical. At 2 1/2 months w/normal developement to that point,he started doing little sit ups as we called them. Mistakenly dx asreflux a common mistake for Infantile spasms. Long story short was dxand the gamut of test run. Every test at that time came back normalthey included: MRI, CT scan, urine organic acids, amino acids, lumbarpuncture or spinal tap and ekg. The only abnormal was the EEG but wenew that because we could see the seizures. We were told as much as wewanted an answer for why he was seizing, it was better not to have causethat he had a better chance of just growing out of them. Jump down theroad a bit to 6/2/02, that was his last clinical seizure w/the help ofACTH How ever bcause of the seizures (we were told) he has developementdelay. He just started rolling both ways on fathers day and has prettygood head control but he is not sitting on his own or holding/graspingfor toys in his hands and doesn't like to stand. When he is on hisbelly, his legs move like he wants to crawl but he doesn't push upperbody off floor w/arms and speech is delayed also. He gets all thetherapies.Thinking we were past all the bad stuff, (we were told his delays wouldcatch up after seizure control) Noah had an MRI on 7/15. It came backabnormal this time. Three things were showing, first there was abnormalsignal in deep grey, brain stem and cerebellum. Then increased fluidaround brain not sure if that is undersized brain or atrophy of brainfrom the ACTH. Neurologist said it was hard to say. Lastly,underdeverloped temporal regions. Her conclusions were a metabolicdisease, either mitochonrial or orga nic acidemia or unknown.So what we have done is repeat all those test that came back normalbefore like the organic acids and amino acids. There was a lactatesomething ordered and a serum something order. We meet w/the geneticisttomorrow and are not sure what we will find out. I guess we are justwondering if anyone out there has any advise on where to go from here.What kinds of questions should we be asking the dr. tomorrow? I had acompletely normal preg. and c-section birth due to previous c-sections.Noah looks completely normal besides his delay. I just can't believethis is happening to us again just when we thought we were out of thewoods. Everything I look up on the net about metabolic diseases is sobleek and I haven't even brought myself to look up mito diseases. Ionly know it effects the cell and my knowledge ends there. I do knowthey're not good things to have and that is why I have put off knowinganym ore about them. Depending on the results to these repeated test, wewill probably have a skin and muscle biopsy.Any advise would be appreciated. Sorry this is so long I just wanted togive as much history and background as possible.Do I need to subscribe to the email listed on the home page at yahoo oris joining the group enough to receive replys via email?Thanks so much,ToriPlease contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2002 Report Share Posted July 24, 2002 Deb, The reason I was given was that a new heart would probably turn back into the old heart due to the disorder!? Possibly another unsaid reason was that his future may not have been good anyway if you know what I mean. Thankfully with an inconclusive result he was still able to be assessed. Sadly - you know the rest. Donna x Re: new member When I was told that Lochie could not get a heart transplant if he had a mito disorder I was so scared for himDonnajust curious as to what thier reasoning for this would be...can you share?deb Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
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