Guest guest Posted June 13, 2001 Report Share Posted June 13, 2001 from Dale, Mom to Katy, CVID, age 17 Ursula, I'm soooooooooo sorry. You know we all understand. We're all wondering when our kid will cause us to cancel, too!!! Katy's drooping really badly, but we did blood work, urinalysis and stool studies yesterday -- so hopefully we can get her back on track quickly. Please give Macey a big hug and then have a good cry. Our kids are more important that meetings -- you know that. And there WILL be more conferences. Take care of yourself. Is this EBV related? I'll be glad to be the point person for you. I'm Dale Weatherford and I'll be at the Waterfront Hotel. Ask for my room number at the front desk and then come up and say hi! I'll try to figure out a time when we can all meet together and get a group picture to send Ursula. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2001 Report Share Posted June 13, 2001 from Dale, Mom to Katy, CVID, age 17 Ursula, I'm soooooooooo sorry. You know we all understand. We're all wondering when our kid will cause us to cancel, too!!! Katy's drooping really badly, but we did blood work, urinalysis and stool studies yesterday -- so hopefully we can get her back on track quickly. Please give Macey a big hug and then have a good cry. Our kids are more important that meetings -- you know that. And there WILL be more conferences. Take care of yourself. Is this EBV related? I'll be glad to be the point person for you. I'm Dale Weatherford and I'll be at the Waterfront Hotel. Ask for my room number at the front desk and then come up and say hi! I'll try to figure out a time when we can all meet together and get a group picture to send Ursula. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2001 Report Share Posted June 13, 2001 from Dale, Mom to Katy, CVID, age 17 Ursula, I'm soooooooooo sorry. You know we all understand. We're all wondering when our kid will cause us to cancel, too!!! Katy's drooping really badly, but we did blood work, urinalysis and stool studies yesterday -- so hopefully we can get her back on track quickly. Please give Macey a big hug and then have a good cry. Our kids are more important that meetings -- you know that. And there WILL be more conferences. Take care of yourself. Is this EBV related? I'll be glad to be the point person for you. I'm Dale Weatherford and I'll be at the Waterfront Hotel. Ask for my room number at the front desk and then come up and say hi! I'll try to figure out a time when we can all meet together and get a group picture to send Ursula. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2001 Report Share Posted June 13, 2001 Dale - thanks, I'm not sure if its EBV or anemia. I have the fatigue that I had with EBV but not the muscle aches or swollen glands or fevers. Probably just anemic. It's a weird type of fatigue. I'm good to go as long as I can close my eyes and take a few deep breaths. I can even sit and maintain a conversation, as long as my eyes are closed. I feel so fatigued at times my heart seems to catch in my throat, at other times I'm overcome with nausea I'm so tired. But not tired in the sense of being sleepy. There's a thought of postural hypotension but everything's still up in the air and I'm just going to try to get through these appointments of Macey's and midterms next week and then go see my internist. I truly feel sometimes like my hearts going to jump out of my throat. Ursula Holleman Macey's mom (6 yr. old with CVID, asthma, sinus disease, GERD, kidney reflux, Sensory Integration Disorder, Diabetes Insipidus) http://home.att.net/~maceyh/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2001 Report Share Posted June 13, 2001 Dale - thanks, I'm not sure if its EBV or anemia. I have the fatigue that I had with EBV but not the muscle aches or swollen glands or fevers. Probably just anemic. It's a weird type of fatigue. I'm good to go as long as I can close my eyes and take a few deep breaths. I can even sit and maintain a conversation, as long as my eyes are closed. I feel so fatigued at times my heart seems to catch in my throat, at other times I'm overcome with nausea I'm so tired. But not tired in the sense of being sleepy. There's a thought of postural hypotension but everything's still up in the air and I'm just going to try to get through these appointments of Macey's and midterms next week and then go see my internist. I truly feel sometimes like my hearts going to jump out of my throat. Ursula Holleman Macey's mom (6 yr. old with CVID, asthma, sinus disease, GERD, kidney reflux, Sensory Integration Disorder, Diabetes Insipidus) http://home.att.net/~maceyh/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2001 Report Share Posted June 13, 2001 Dale - thanks, I'm not sure if its EBV or anemia. I have the fatigue that I had with EBV but not the muscle aches or swollen glands or fevers. Probably just anemic. It's a weird type of fatigue. I'm good to go as long as I can close my eyes and take a few deep breaths. I can even sit and maintain a conversation, as long as my eyes are closed. I feel so fatigued at times my heart seems to catch in my throat, at other times I'm overcome with nausea I'm so tired. But not tired in the sense of being sleepy. There's a thought of postural hypotension but everything's still up in the air and I'm just going to try to get through these appointments of Macey's and midterms next week and then go see my internist. I truly feel sometimes like my hearts going to jump out of my throat. Ursula Holleman Macey's mom (6 yr. old with CVID, asthma, sinus disease, GERD, kidney reflux, Sensory Integration Disorder, Diabetes Insipidus) http://home.att.net/~maceyh/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2001 Report Share Posted June 14, 2001 Hi well looks like we are in for a long summer or atleast month. Lucas was exposed to Pertussis 10 days ago. The little boy had dinner with us and they played together. He has a positive culture. Today, Lucas is sick with a fever and cold symptoms. I went to the CDC site and it does not look hopeful for a short course. He was given the DTAP at 18 months and had a very severe reaction so we could not give him anymore. My daughter also had a reaction so could not be vaccinated. any suggestions? Barbie Lucas 5, Selective antibody deficiency, chronic sinusitis, otitis, sensory integration def. hypogamm and dysgammaglobulinemia. asthma Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2001 Report Share Posted June 14, 2001 Hi well looks like we are in for a long summer or atleast month. Lucas was exposed to Pertussis 10 days ago. The little boy had dinner with us and they played together. He has a positive culture. Today, Lucas is sick with a fever and cold symptoms. I went to the CDC site and it does not look hopeful for a short course. He was given the DTAP at 18 months and had a very severe reaction so we could not give him anymore. My daughter also had a reaction so could not be vaccinated. any suggestions? Barbie Lucas 5, Selective antibody deficiency, chronic sinusitis, otitis, sensory integration def. hypogamm and dysgammaglobulinemia. asthma Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2001 Report Share Posted June 14, 2001 Hi well looks like we are in for a long summer or atleast month. Lucas was exposed to Pertussis 10 days ago. The little boy had dinner with us and they played together. He has a positive culture. Today, Lucas is sick with a fever and cold symptoms. I went to the CDC site and it does not look hopeful for a short course. He was given the DTAP at 18 months and had a very severe reaction so we could not give him anymore. My daughter also had a reaction so could not be vaccinated. any suggestions? Barbie Lucas 5, Selective antibody deficiency, chronic sinusitis, otitis, sensory integration def. hypogamm and dysgammaglobulinemia. asthma Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2001 Report Share Posted June 15, 2001 - sorry to hear your also not going. I can't remember but has Abby been tested for immotile cilia? The diagnosis just came to mind when I think of CF-like patients. Ursula Holleman Macey's mom (6 yr. old with CVID, asthma, sinus disease, GERD, kidney reflux, Sensory Integration Disorder, Diabetes Insipidus) http://home.att.net/~maceyh/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2001 Report Share Posted June 15, 2001 Ursula- I am sorry to hear you are not feeling well. Please take care of yourself and see your dr. There will be other conferences. I had to cancel too, unforuately. Too much going on here. Abby has to see a new dr. I am really believing that she has Cystic Fibrosis. She really doesn't have a clear diagnosis. Besides that hubby can't come and help drive. When I canceled they said they would be selling tapes of the conference. Please take care of yourself. God Bless , Mom to: Evan 7, 5 (Shwachman Syndrome, CVID, Chronic Sinusitis, severe neutropenia, leukopenia, and kidney reflux) and Abby Rose 3 (Shwachman Syndrome) --------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2001 Report Share Posted June 15, 2001 Ursula- No she hasn't. At least that I know of. She is on enzymes for malabsorbion and up unti lthis fall lungs were so so. She has had pneumonia 3 times in 6 months and has a cough that won't go away. We also have a history of CF in the family. Can you tell me what that is? immotile cilia? She has been tested for celiac's disease and immune deficiencies. She has had 3 swet tests come back high borderline anything less than 39 is neg for CF and anything above 60 is positive Abbys scores were 49, 51 and 52. Our new ped said she would consider that positive for CF especially with family history. And that many times lung problems come along gradually. Who knows. Thanks , Mom to: Evan 7, 5 (Shwachman Syndrome, CVID, Chronic Sinusitis, severe neutropenia, leukopenia, and kidney reflux) and Abby Rose 3 (Shwachman Syndrome) --------------------------------- Quote Link to comment Share on other sites More sharing options...
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