Guest guest Posted July 25, 2004 Report Share Posted July 25, 2004 Not only is it common for family members of a PID patient to have an autoimmune disease (or 2), it's very common for a PID patient to develop an autoimmune disease. It's like what little system is there fights with itself. Ursula Holleman mom to (11 yrs old) and Macey (9 yr. old with CVID, Diabetes Insipidus, colonic inertia) http://members.cox.net/maceyh Immune Deficiency Foundation - Peer Contact for GA http://www.primaryimmune.org / Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2004 Report Share Posted July 25, 2004 In a message dated 7/25/2004 8:26:12 PM Eastern Daylight Time, pmork@... writes: Lupus is an autoimmune disease and needless to say, they screen her for it every year! Can you tell me how they screen for Lupus? I have a positive ANA, and other signs of Lupus, but my DR, not Brittany's, said I don't have Lupus. Janet, mom to Brittany, CVID, age 13 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2004 Report Share Posted July 25, 2004 In a message dated 7/25/2004 8:26:12 PM Eastern Daylight Time, pmork@... writes: Lupus is an autoimmune disease and needless to say, they screen her for it every year! Can you tell me how they screen for Lupus? I have a positive ANA, and other signs of Lupus, but my DR, not Brittany's, said I don't have Lupus. Janet, mom to Brittany, CVID, age 13 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2004 Report Share Posted July 25, 2004 In a message dated 7/25/2004 9:09:32 PM Eastern Daylight Time, pmork@... writes: Fast forward to now: we now get comments from people who knew her when she was so sick about how wonderful she looks! She is tanned and energetic and has a personality (finally). That is WONDERFUL!!!!!!!!!! I'm happy to hear this about Rebekah. This really helps me to think positive about all of this:) Janet, mom to Brittany,CVID, age 13 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2004 Report Share Posted July 25, 2004 In a message dated 7/25/2004 9:41:38 PM Eastern Daylight Time, mgt66@... writes: I've seen him look good just a few times, one being when he has a good fluid level after getting IV fluids Hmm, that is funny. Brittany looks much better after IV fluids too. Wonder why? Janet, mom to Brittany, CVID, age 13 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2004 Report Share Posted July 25, 2004 In a message dated 7/25/2004 9:46:26 PM Eastern Daylight Time, pmork@... writes: Well, I can tell you that I didn't think she'd ever look healthy! There were some tremendously scary days there for a long while! And a lot of frustration, too! Pam, believe me, I know those feeling!! Janet, mom to Brittany, CVID, age 13 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2004 Report Share Posted July 25, 2004 In a message dated 7/25/2004 9:46:26 PM Eastern Daylight Time, pmork@... writes: Well, I can tell you that I didn't think she'd ever look healthy! BTW Pam, I would love to see pictures? Janet, mom to Brittany, CVID, age 13 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2004 Report Share Posted July 25, 2004 My is IgA Deficient, with asthma and chronic ear problems, and she is also porcelain white, with big, black circles under her eyes. Everyone always comments that she hasn't had enough sleep, but that isn't it. They also think she is sick all the time, even when she is well. She has platinum blonde hair, so her skin color is consistent with her hair, but she always has the deep, dark circles, which are much worse when she is sick. I have a little bit of the dark circles, but nothing like 's (and I can cover mine with makeup)! .Oh, and Katy was also porcelain white -- until the last few years. Now, she can actually keep a tan for a while, but in the winter, she'll go back to pure white. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2004 Report Share Posted July 25, 2004 In a message dated 7/25/2004 10:47:50 PM Eastern Daylight Time, kkrt1@... writes: but huge puppy dog eyes... AWW, Pretty I bet. What color are they? Britt's are big also and green. Janet, mom to Brittany, CVID, age 13 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2004 Report Share Posted July 25, 2004 I do!! Rebekah was white with the big black circles for most of her life before CVID. We noticed that she wasn't as sick as often as soon as we started the IVIG, but she wasn't healthy by a long shot. Both our ped and our immuno commented that she had had a lot of healing to do, especially since all of her illnesses had been written off as viruses and she had had no antibiotics! Fast forward to now: we now get comments from people who knew her when she was so sick about how wonderful she looks! She is tanned and energetic and has a personality (finally). Pam wife to (17 years) mother to , 10, Hannah, 8, Rebekah, 4, and Leah, 3 Do you think that the sicker they are the longer IVIG takes to start working? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2004 Report Share Posted July 25, 2004 I do!! Rebekah was white with the big black circles for most of her life before CVID. We noticed that she wasn't as sick as often as soon as we started the IVIG, but she wasn't healthy by a long shot. Both our ped and our immuno commented that she had had a lot of healing to do, especially since all of her illnesses had been written off as viruses and she had had no antibiotics! Fast forward to now: we now get comments from people who knew her when she was so sick about how wonderful she looks! She is tanned and energetic and has a personality (finally). Pam wife to (17 years) mother to , 10, Hannah, 8, Rebekah, 4, and Leah, 3 Do you think that the sicker they are the longer IVIG takes to start working? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2004 Report Share Posted July 25, 2004 We have three blood relatives with lupus, including a 7yo boy who died from it. Lupus is an autoimmune disease and needless to say, they screen her for it every year! Our immuno was interested in the fact that rheumatoid arthritis and iron deficiency ran throughout both sides of the family, too. I think he was just developing a thorough family history to help him know what to watch for. Pam wife to (17 years) mother to , 10, Hannah, 8, Rebekah, 4, and Leah, 3 The immunologist was asking us about family history of autoimmune disorders. I told him that her grandfather, on her fathers side, died from myasthenia gravis. (I think I spelled that correctly) Is that common for other families to have histories of autoimmune disorders? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2004 Report Share Posted July 25, 2004 We have three blood relatives with lupus, including a 7yo boy who died from it. Lupus is an autoimmune disease and needless to say, they screen her for it every year! Our immuno was interested in the fact that rheumatoid arthritis and iron deficiency ran throughout both sides of the family, too. I think he was just developing a thorough family history to help him know what to watch for. Pam wife to (17 years) mother to , 10, Hannah, 8, Rebekah, 4, and Leah, 3 The immunologist was asking us about family history of autoimmune disorders. I told him that her grandfather, on her fathers side, died from myasthenia gravis. (I think I spelled that correctly) Is that common for other families to have histories of autoimmune disorders? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2004 Report Share Posted July 25, 2004 Ursula - He has been on it for about a year now. He gets the occasional break from it when he has certain tests and a lot recently as he has been having a bunch of testing for allergies. It is an anti-histimine, so he cannot be on it for a while before any allergy testing. Our GI says it works best when you are able to take occasional breaks from it as it tends to lose it's effectiveness over time. It has worked VERY well for him, but it has not recently as he has had so much trouble with diarrhea and was also taking Metronidazole for a suspected bacterial overgrowth. Those 2 things have really put him off eating, but we are slowly working back up to eating more orally. I am hoping the Immuno will be able to help us figure out what is going on with him! Hope this helps you. Good luck! Melody, mom to 20 mo old - GERD, DGE, MSPI, RAD, Tube fed, awaiting appt with Immuno for possible immunodeficiency. Re: new member Melody - how long has he been on the Periactin? Does he take breaks from using it or has he been on it continuously? We have it on hand if needs it again but I'm scared that she would develop some type of dependency. Ursula Holleman mom to (11 yrs old) and Macey (9 yr. old with CVID, Diabetes Insipidus, colonic inertia) http://members.cox.net/maceyh Immune Deficiency Foundation - Peer Contact for GA http://www.primaryimmune.org / This forum is open to parents and caregivers of children diagnosed with a Primary Immune Deficiency. Opinions or medical advice stated here are the sole responsibility of the poster and should not be taken as professional advice. To unsubscribe -unsubscribegroups (DOT) To search group archives go to: /messages Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2004 Report Share Posted July 25, 2004 Ursula - He has been on it for about a year now. He gets the occasional break from it when he has certain tests and a lot recently as he has been having a bunch of testing for allergies. It is an anti-histimine, so he cannot be on it for a while before any allergy testing. Our GI says it works best when you are able to take occasional breaks from it as it tends to lose it's effectiveness over time. It has worked VERY well for him, but it has not recently as he has had so much trouble with diarrhea and was also taking Metronidazole for a suspected bacterial overgrowth. Those 2 things have really put him off eating, but we are slowly working back up to eating more orally. I am hoping the Immuno will be able to help us figure out what is going on with him! Hope this helps you. Good luck! Melody, mom to 20 mo old - GERD, DGE, MSPI, RAD, Tube fed, awaiting appt with Immuno for possible immunodeficiency. Re: new member Melody - how long has he been on the Periactin? Does he take breaks from using it or has he been on it continuously? We have it on hand if needs it again but I'm scared that she would develop some type of dependency. Ursula Holleman mom to (11 yrs old) and Macey (9 yr. old with CVID, Diabetes Insipidus, colonic inertia) http://members.cox.net/maceyh Immune Deficiency Foundation - Peer Contact for GA http://www.primaryimmune.org / This forum is open to parents and caregivers of children diagnosed with a Primary Immune Deficiency. Opinions or medical advice stated here are the sole responsibility of the poster and should not be taken as professional advice. To unsubscribe -unsubscribegroups (DOT) To search group archives go to: /messages Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2004 Report Share Posted July 25, 2004 > Hmm, I have a question? How many kids are thin, pale, and have dark circles > under their eyes? > Britt is age 13, about 5 " 4 weighs 85 lbs, very pale and has dark circles > under her eyes. > > Janet Zachary is pale, sometimes more gray then pale, and also has dark circles-and very veiny skin around the eyes. His eyes definately sink in alot when he isn't feeling well. I sometimes get the comment that he must have horrible allergies- which all the testing(skin and RAST) has always been negative too, and he is very thin. Each time we take him to see a new dr, we always seem to end up screening for leukemia due to his horrible bruising problems and how pale he is. I've seen him look good just a few times, one being when he has a good fluid level after getting IV fluids, and a couple of times after IVIG-but it usually wears off quickly.~MG & Zachary-IgG total deficiency,IgG subclass 1 & 4 deficiency, IgA Deficiency, Antibody Dysfunction,GERD,Asthma and quite a few other chronic problems Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2004 Report Share Posted July 25, 2004 > Hmm, I have a question? How many kids are thin, pale, and have dark circles > under their eyes? > Britt is age 13, about 5 " 4 weighs 85 lbs, very pale and has dark circles > under her eyes. > > Janet Zachary is pale, sometimes more gray then pale, and also has dark circles-and very veiny skin around the eyes. His eyes definately sink in alot when he isn't feeling well. I sometimes get the comment that he must have horrible allergies- which all the testing(skin and RAST) has always been negative too, and he is very thin. Each time we take him to see a new dr, we always seem to end up screening for leukemia due to his horrible bruising problems and how pale he is. I've seen him look good just a few times, one being when he has a good fluid level after getting IV fluids, and a couple of times after IVIG-but it usually wears off quickly.~MG & Zachary-IgG total deficiency,IgG subclass 1 & 4 deficiency, IgA Deficiency, Antibody Dysfunction,GERD,Asthma and quite a few other chronic problems Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2004 Report Share Posted July 25, 2004 > Hmm, I have a question? How many kids are thin, pale, and have dark circles > under their eyes? > Britt is age 13, about 5 " 4 weighs 85 lbs, very pale and has dark circles > under her eyes. > > Janet Zachary is pale, sometimes more gray then pale, and also has dark circles-and very veiny skin around the eyes. His eyes definately sink in alot when he isn't feeling well. I sometimes get the comment that he must have horrible allergies- which all the testing(skin and RAST) has always been negative too, and he is very thin. Each time we take him to see a new dr, we always seem to end up screening for leukemia due to his horrible bruising problems and how pale he is. I've seen him look good just a few times, one being when he has a good fluid level after getting IV fluids, and a couple of times after IVIG-but it usually wears off quickly.~MG & Zachary-IgG total deficiency,IgG subclass 1 & 4 deficiency, IgA Deficiency, Antibody Dysfunction,GERD,Asthma and quite a few other chronic problems Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2004 Report Share Posted July 25, 2004 Well, I can tell you that I didn't think she'd ever look healthy! There were some tremendously scary days there for a long while! And a lot of frustration, too! Pam wife to (17 years) mother to , 10, Hannah, 8, Rebekah, 4, and Leah, 3 Re: new member In a message dated 7/25/2004 9:09:32 PM Eastern Daylight Time, pmork@... writes: Fast forward to now: we now get comments from people who knew her when she was so sick about how wonderful she looks! She is tanned and energetic and has a personality (finally). That is WONDERFUL!!!!!!!!!! I'm happy to hear this about Rebekah. This really helps me to think positive about all of this:) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2004 Report Share Posted July 25, 2004 Well, I can tell you that I didn't think she'd ever look healthy! There were some tremendously scary days there for a long while! And a lot of frustration, too! Pam wife to (17 years) mother to , 10, Hannah, 8, Rebekah, 4, and Leah, 3 Re: new member In a message dated 7/25/2004 9:09:32 PM Eastern Daylight Time, pmork@... writes: Fast forward to now: we now get comments from people who knew her when she was so sick about how wonderful she looks! She is tanned and energetic and has a personality (finally). That is WONDERFUL!!!!!!!!!! I'm happy to hear this about Rebekah. This really helps me to think positive about all of this:) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2004 Report Share Posted July 25, 2004 my son is 19 months old and also has super pale skin.. I actually have put sunscreen on, and let him play in the pool hoping for some color..To no avail.. still ghostly white... /gray. no dark circles.. but huge puppy dog eyes... Re: new member > Hmm, I have a question? How many kids are thin, pale, and have dark circles > under their eyes? > Britt is age 13, about 5 " 4 weighs 85 lbs, very pale and has dark circles > under her eyes. > > Janet Zachary is pale, sometimes more gray then pale, and also has dark circles-and very veiny skin around the eyes. His eyes definately sink in alot when he isn't feeling well. I sometimes get the comment that he must have horrible allergies- which all the testing(skin and RAST) has always been negative too, and he is very thin. Each time we take him to see a new dr, we always seem to end up screening for leukemia due to his horrible bruising problems and how pale he is. I've seen him look good just a few times, one being when he has a good fluid level after getting IV fluids, and a couple of times after IVIG-but it usually wears off quickly.~MG & Zachary-IgG total deficiency,IgG subclass 1 & 4 deficiency, IgA Deficiency, Antibody Dysfunction,GERD,Asthma and quite a few other chronic problems This forum is open to parents and caregivers of children diagnosed with a Primary Immune Deficiency. Opinions or medical advice stated here are the sole responsibility of the poster and should not be taken as professional advice. To unsubscribe -unsubscribegroups (DOT) To search group archives go to: /messages<PedP\ ID/messages> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 26, 2004 Report Share Posted July 26, 2004 Hi , What city and State are you in? Crista Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 27, 2004 Report Share Posted July 27, 2004 Boston Mass HOME To THe DNC this weekcristab@... wrote: Hi ,What city and State are you in?Crista __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 27, 2004 Report Share Posted July 27, 2004 Hi here also, who is 8, is also very thin, pale( milk white) with the circles under her eyes as well. She also bruises very easily and big ones too, she has been tested for leukemia as well. She also gets a petechial rash sometimes (clusters of very tiny dark red spots,) usually over her chest and trunk . mom to - CVID, asthma GERD Re: new member > Hmm, I have a question? How many kids are thin, pale, and have dark circles > under their eyes? > Britt is age 13, about 5 " 4 weighs 85 lbs, very pale and has dark circles > under her eyes. > > Janet Zachary is pale, sometimes more gray then pale, and also has dark circles-and very veiny skin around the eyes. His eyes definately sink in alot when he isn't feeling well. I sometimes get the comment that he must have horrible allergies- which all the testing(skin and RAST) has always been negative too, and he is very thin. Each time we take him to see a new dr, we always seem to end up screening for leukemia due to his horrible bruising problems and how pale he is. I've seen him look good just a few times, one being when he has a good fluid level after getting IV fluids, and a couple of times after IVIG-but it usually wears off quickly.~MG & Zachary-IgG total deficiency,IgG subclass 1 & 4 deficiency, IgA Deficiency, Antibody Dysfunction,GERD,Asthma and quite a few other chronic problems Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 27, 2004 Report Share Posted July 27, 2004 My DD is , she is 2 1/2 years old with Congenital Scoliosis, Klippel Feil Syndrome, VATER (Vertebrae and Renal - she has one kidney) Syndrome, Torticollis, minor kyphosis, fused ribs, hemivertabrae, and facial asymmetry. We were looking into the VEPTR (aka: Titanium Rib) for her - hence our trip to Boston. But she is not eligible. Now we are looking into growth rods for her. Dr. Crawford at Cincinnati Children's Hospital is her primary dr when it comes to ortho and he wants to submit her name to be put into a study that he is a part of. I should know by our next visit in Sept. if they are accepting her. Gail Re: new member Boston Mass HOME To THe DNC this weekcristab@... wrote: Hi ,What city and State are you in?Crista __________________________________________________ Quote Link to comment Share on other sites More sharing options...
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