Guest guest Posted March 4, 1999 Report Share Posted March 4, 1999 Donna, The doctor I wrote you about is Dr. Hostoffer, that Autumn sees. Sorry I spelled his name wrong. Gail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 1999 Report Share Posted March 4, 1999 Couldn't you do a culture swab over the area and do a fungal test? We've tested areas of Macey's hands and arms this way before. We swipe over it with a sterile culture q-tip and send it in for fungal testing. Ursula Holleman Re: (no subject) From: WNo5039051@... Mathers, How could he be tested for yeast in the anal area? Urine has been tested for yeast but none was found. He uses hemoroid cream at least once a week. Thanks, Donna ------------------------------------------------------------------------ Have you visited our new web site? http://www.onelist.com Onelist: Helping to create Internet communities ------------------------------------------------------------------------ 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. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 1999 Report Share Posted March 4, 1999 Couldn't you do a culture swab over the area and do a fungal test? We've tested areas of Macey's hands and arms this way before. We swipe over it with a sterile culture q-tip and send it in for fungal testing. Ursula Holleman Re: (no subject) From: WNo5039051@... Mathers, How could he be tested for yeast in the anal area? Urine has been tested for yeast but none was found. He uses hemoroid cream at least once a week. Thanks, Donna ------------------------------------------------------------------------ Have you visited our new web site? http://www.onelist.com Onelist: Helping to create Internet communities ------------------------------------------------------------------------ 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. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 1999 Report Share Posted March 4, 1999 Donna, Zach's had anal itching, his was yeast. At 07:10 PM 3/4/99 EST, you wrote: >From: WNo5039051@... > >Gail, > What is Giardi? What are the symptoms so I can mention it to the >immunologist? One other question. Have any children(mine being a boy) had any >problems with blood in the urine??? My son at least once a week tells me or >shows me he has passed blood while using the restroom. Docs took urine samples >but nothing was found(no bacteria or yeast inf). He also complains constantly >about (sorry....) " anal " itching. No hemmoroids were found but hem cream >helps! Thanks, Donna > >------------------------------------------------------------------------ >Come check out our brand new web site! >http://www.onelist.com >Onelist: Making the Internet intimate >------------------------------------------------------------------------ >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. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 1999 Report Share Posted March 4, 1999 The nice wonderful " extra " Macey had from antibiotic therapy was bacterial overgrowth of the small intestine. It was found with a breath test and she had to take oral gentamicin for 10 days. I think she's got it again now because she's having 2-3 soft stools a day and they stink to high heaven (as they did before) plus she's complaining all day today of stomach pain. We'll check into it tomorrow. Ursula Macey's mom (3 yr old with CVID, Asthma, GERD, anemia, grade I left kidney reflux, hypertension (undiagnosed), sinus disease) Re: (no subject) From: MATHERS313@... I am a student nurse at JPS Institute for Health Career Development and one of the side effects/adverse reactions to antibiotic therapy is what they call " super-infections " which are like thrush, yeast, sudomembranous colitis (raging diarrhea). When Adam had it, the doctor did routine stool cultures and treated him with Acidophilus to replace the good bacteria in his intestinal tract (you can by it at health food stores) and there was a prescription medication. I don't remember the name right off but it caused a bad metalic taste in his mouth and he would gag and spit it up every time we gave it to him because the taste was so bad (it was purple...can anyone think what it's called?). Anyway, he was better after about 2 rounds of the prescription med and we kept him on the Acidophilus to prevent future episodes. His only problem in that area now is stomach aches and light fatty clay stools. ------------------------------------------------------------------------ We have a new web site! http://www.onelist.com Onelist: The leading provider of free email community services ------------------------------------------------------------------------ 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. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 1999 Report Share Posted March 7, 1999 Anne , I hope the testing of your son goes well. My daughter was diagnosed last September at 13mos with Selective IgA deficiency and what they hope is transient hypogammaglobulinemia (whew that's a long word!). Her levels were IgA 3 and IgG was 273. She is doing really well though she has bad allergies and is showing signs of developing asthma. I know the testing period was very stressful for us and I hope that yours goes quickly and you get an answer to your questions. Married to Steve 12/30/95 Mommy to Grace 8/14/97 " Nothing is really over....until you stop trying " Re: (no subject) >From: AReckling@... > >Hi - sorry about the blank e-mail. I'm new to all of this -PID and E-mail. >I've just been diagnosed with CVID and my 2.5 year old is in the middle of the >testing process. For now, I'm just kind of hanging on until we have a better >idea of what we're dealing with in my son. It's not easy. And, I'm trying to >get as much info. as possible, so I'll be listening in... >Thanks, Anne > >------------------------------------------------------------------------ >Have you visited our new web site? >http://www.onelist.com >Onelist: Helping to create Internet communities >------------------------------------------------------------------------ >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. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 1999 Report Share Posted March 7, 1999 Anne , I hope the testing of your son goes well. My daughter was diagnosed last September at 13mos with Selective IgA deficiency and what they hope is transient hypogammaglobulinemia (whew that's a long word!). Her levels were IgA 3 and IgG was 273. She is doing really well though she has bad allergies and is showing signs of developing asthma. I know the testing period was very stressful for us and I hope that yours goes quickly and you get an answer to your questions. Married to Steve 12/30/95 Mommy to Grace 8/14/97 " Nothing is really over....until you stop trying " Re: (no subject) >From: AReckling@... > >Hi - sorry about the blank e-mail. I'm new to all of this -PID and E-mail. >I've just been diagnosed with CVID and my 2.5 year old is in the middle of the >testing process. For now, I'm just kind of hanging on until we have a better >idea of what we're dealing with in my son. It's not easy. And, I'm trying to >get as much info. as possible, so I'll be listening in... >Thanks, Anne > >------------------------------------------------------------------------ >Have you visited our new web site? >http://www.onelist.com >Onelist: Helping to create Internet communities >------------------------------------------------------------------------ >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. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 1999 Report Share Posted March 7, 1999 Hi - sorry about the blank e-mail. I'm new to all of this -PID and E-mail. I've just been diagnosed with CVID and my 2.5 year old is in the middle of the testing process. For now, I'm just kind of hanging on until we have a better idea of what we're dealing with in my son. It's not easy. And, I'm trying to get as much info. as possible, so I'll be listening in... Thanks, Anne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 1999 Report Share Posted March 7, 1999 Hi - sorry about the blank e-mail. I'm new to all of this -PID and E-mail. I've just been diagnosed with CVID and my 2.5 year old is in the middle of the testing process. For now, I'm just kind of hanging on until we have a better idea of what we're dealing with in my son. It's not easy. And, I'm trying to get as much info. as possible, so I'll be listening in... Thanks, Anne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 1999 Report Share Posted March 7, 1999 Anne, First let me say WELCOME!! You have come to the right place for information. I feel sorry for the docs when we all go next time. I personally have learned so much from " our group " . I have searched for 5 1/2yrs for info on PID and this has been the only place I have found so far that gives honest (or any for that matter!) info on any of the PID's. My son was diagnosed at 10mo of IGA absent but I have always thought there to be more. After listening to alot of the group I am now sure there is. My thanks to Ursula, who told me how to find this. Thanks Ursula! You have been a true lifesaver!!! Welcome again and I hope you find what you are looking for within our group. Good luck to you and to your child and as always...my prayers are with you all! Donna & Walt-IGA absent-asthma-8wk preemie p.s. before signing off we like to add who we are and what we have so people know who they are talking with. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 1999 Report Share Posted April 23, 1999 Sandy, How scary!!!! As a parent, that would have terrified me.... glad they are doing the testing. It's odd, but I've been getting the IVIG for 2 months now with little reactions (mild headache, chills, and sometimes a headache a few days after) and feel lucky about this. My doctor told me I was at high risk for a bad reaction so I am infused in the infusion center at a major hospital with him just down the hall. They had epinephrine ready at my side the first few times. I asked the doctor today (I was dropping off my son's blood to be tested) if he ever tested me for anti-IgA antibodies and he said, no, but that he'd frozen some of my blood in case I developed further problems. I didn't ask what he meant by this. I suppose he'd send the testing to Duke since that's where he trained in immunology. Also, my IgA levels are less than the least amount possible to detect, so I think they are 'virtually 0', but I don't know if they are absolutely 0. The same with my son's IgA level. Good luck with your son. I hope that treatment becomes available. Anne - CVID, mother of Sam (IgA deficient, ?CVID, ?specific antibody deficiency) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 1999 Report Share Posted April 23, 1999 Sandy, How scary!!!! As a parent, that would have terrified me.... glad they are doing the testing. It's odd, but I've been getting the IVIG for 2 months now with little reactions (mild headache, chills, and sometimes a headache a few days after) and feel lucky about this. My doctor told me I was at high risk for a bad reaction so I am infused in the infusion center at a major hospital with him just down the hall. They had epinephrine ready at my side the first few times. I asked the doctor today (I was dropping off my son's blood to be tested) if he ever tested me for anti-IgA antibodies and he said, no, but that he'd frozen some of my blood in case I developed further problems. I didn't ask what he meant by this. I suppose he'd send the testing to Duke since that's where he trained in immunology. Also, my IgA levels are less than the least amount possible to detect, so I think they are 'virtually 0', but I don't know if they are absolutely 0. The same with my son's IgA level. Good luck with your son. I hope that treatment becomes available. Anne - CVID, mother of Sam (IgA deficient, ?CVID, ?specific antibody deficiency) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 1999 Report Share Posted April 27, 1999 Ursula, All of your concerns are valid. Check with your immunologist to see if he/she can give the school staff a talk. When Zach was in school last year, Our immu. did this. Sorry to say though, it still didn't seem to help much. The ignorance of the staff with the attitude, " he looks fine " really got to me. They also all become dr.'s and had all sorts of solutions for something they knew nothing about. Can you tell you struck a sore spot with this issue? But anyways, I think that you're off to a good start. Hopefully they'll cooperate. My biggest problem retrospectively, was that I was wishey washey about the whole thing. If you present yourself as a concerned parent and not a crazed, over protective mom, you might have better luck. My problem, I felt, was that no body believed that he was truly sick. You know how the behavior issues act up when they're really sick? well they just kept saying that he needs psychological help. I am not saying all of this to scare you, I know that plenty of PID kids go to school, but just prepare yourself. Which it sounds like you are doing. Thanks for letting me vent... Keep us posted, Wife to Tom, Mom to 6 yr Zach, ???(don't know the specific type) PID, GERD, chronic sinusitis, IVIG, At 08:40 PM 4/27/99 -0400, you wrote: > > >Ursula - & Macey (CVID) mom > >Thursday we'll meet with Macey's IEP team. We will begin to work on her >plan for next year. We'll meet again 3 days before school start. But we're >meeting now because it will take them all summer to contract for certain >needs Macey has for attending school. Of course all this is contingent on >her able to go in the fall. We will be asking to be able to sign her up >next month for a slot and then be able to structure her school days next >year and still be able to keep the slot. Macey will start school half days >for two to three days a week. Then go full time after a month or so. That >may upset the school or other parents who weren't able to get a slot in the >program. There are only 40 pre-k slots at this elementary. goes here >also and will be in the 1st grade. Her current kindergarten teacher and >other staff know of Macey has a PID and other health issues. So it would be >an easier transition at this school. > >I thought I'd ask the members who have school age PID children what extra >needs they've asked for at school. I have a few concerns that I think need >to be written into her plan. Let me know if these sound off base. Autumn, >I'm especially interested in your opinion. > >1. Since a patient can react for IVIG for up to 2 days after I feel that >someone in the school, in proximity to Macey, should be trained in pediatric >CPR and know how to administer the Epi-pen that she has prescribed for her. >I am though going to try and schedule as many infusions for Friday as I can. > >2. Macey needs filtered water available to her. Some elementary schools >here are already using bottled water to give medications so there's already >a contract for that. I thought a large tank (you know the one turned upside >down) would be good. There are already water fountains installed in every >classroom, I think that Macey should also have her own continuous water >source. Our County water supply is questionable and on top of that there is >a chicken processing plant being built and starting to operate in the >county. It has a drop-off into the water source for the county water. >That's a really hot debate here locally. > >3. Macey is on a low-sodium diet. I can't even begin to imagine how her >lunch and snack options will be approached. > >I'm sure I'll think of a ton of other things over the summer and once we're >closer to the school year her doctors said they will tell us what she needs >particularly. They won't contribute to the list now because they say " We'll >cross that bridge when we come to it " . What they don't understand is that >if I go in there 3 days before school start and start throwing all these >special needs at them then they'll say that they don't have time to set it >all up before school starts. This might delay her starting. So if I give >them some now and then the more doctor specific ones at the first of the >year then things might go smoother. I'm also going to make sure I have her >medical alert necklace ordered by then. > >See, aren't I an optimistic mommy. > > > > >------------------------------------------------------------------------ >New hobbies? New curiosities? New enthusiasms? >http://www.ONElist.com >Sign up for a new e-mail list today! >------------------------------------------------------------------------ >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. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 1999 Report Share Posted April 27, 1999 Ursula, All of your concerns are valid. Check with your immunologist to see if he/she can give the school staff a talk. When Zach was in school last year, Our immu. did this. Sorry to say though, it still didn't seem to help much. The ignorance of the staff with the attitude, " he looks fine " really got to me. They also all become dr.'s and had all sorts of solutions for something they knew nothing about. Can you tell you struck a sore spot with this issue? But anyways, I think that you're off to a good start. Hopefully they'll cooperate. My biggest problem retrospectively, was that I was wishey washey about the whole thing. If you present yourself as a concerned parent and not a crazed, over protective mom, you might have better luck. My problem, I felt, was that no body believed that he was truly sick. You know how the behavior issues act up when they're really sick? well they just kept saying that he needs psychological help. I am not saying all of this to scare you, I know that plenty of PID kids go to school, but just prepare yourself. Which it sounds like you are doing. Thanks for letting me vent... Keep us posted, Wife to Tom, Mom to 6 yr Zach, ???(don't know the specific type) PID, GERD, chronic sinusitis, IVIG, At 08:40 PM 4/27/99 -0400, you wrote: > > >Ursula - & Macey (CVID) mom > >Thursday we'll meet with Macey's IEP team. We will begin to work on her >plan for next year. We'll meet again 3 days before school start. But we're >meeting now because it will take them all summer to contract for certain >needs Macey has for attending school. Of course all this is contingent on >her able to go in the fall. We will be asking to be able to sign her up >next month for a slot and then be able to structure her school days next >year and still be able to keep the slot. Macey will start school half days >for two to three days a week. Then go full time after a month or so. That >may upset the school or other parents who weren't able to get a slot in the >program. There are only 40 pre-k slots at this elementary. goes here >also and will be in the 1st grade. Her current kindergarten teacher and >other staff know of Macey has a PID and other health issues. So it would be >an easier transition at this school. > >I thought I'd ask the members who have school age PID children what extra >needs they've asked for at school. I have a few concerns that I think need >to be written into her plan. Let me know if these sound off base. Autumn, >I'm especially interested in your opinion. > >1. Since a patient can react for IVIG for up to 2 days after I feel that >someone in the school, in proximity to Macey, should be trained in pediatric >CPR and know how to administer the Epi-pen that she has prescribed for her. >I am though going to try and schedule as many infusions for Friday as I can. > >2. Macey needs filtered water available to her. Some elementary schools >here are already using bottled water to give medications so there's already >a contract for that. I thought a large tank (you know the one turned upside >down) would be good. There are already water fountains installed in every >classroom, I think that Macey should also have her own continuous water >source. Our County water supply is questionable and on top of that there is >a chicken processing plant being built and starting to operate in the >county. It has a drop-off into the water source for the county water. >That's a really hot debate here locally. > >3. Macey is on a low-sodium diet. I can't even begin to imagine how her >lunch and snack options will be approached. > >I'm sure I'll think of a ton of other things over the summer and once we're >closer to the school year her doctors said they will tell us what she needs >particularly. They won't contribute to the list now because they say " We'll >cross that bridge when we come to it " . What they don't understand is that >if I go in there 3 days before school start and start throwing all these >special needs at them then they'll say that they don't have time to set it >all up before school starts. This might delay her starting. So if I give >them some now and then the more doctor specific ones at the first of the >year then things might go smoother. I'm also going to make sure I have her >medical alert necklace ordered by then. > >See, aren't I an optimistic mommy. > > > > >------------------------------------------------------------------------ >New hobbies? New curiosities? New enthusiasms? >http://www.ONElist.com >Sign up for a new e-mail list today! >------------------------------------------------------------------------ >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. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 1999 Report Share Posted April 27, 1999 Ursula, All of your concerns are valid. Check with your immunologist to see if he/she can give the school staff a talk. When Zach was in school last year, Our immu. did this. Sorry to say though, it still didn't seem to help much. The ignorance of the staff with the attitude, " he looks fine " really got to me. They also all become dr.'s and had all sorts of solutions for something they knew nothing about. Can you tell you struck a sore spot with this issue? But anyways, I think that you're off to a good start. Hopefully they'll cooperate. My biggest problem retrospectively, was that I was wishey washey about the whole thing. If you present yourself as a concerned parent and not a crazed, over protective mom, you might have better luck. My problem, I felt, was that no body believed that he was truly sick. You know how the behavior issues act up when they're really sick? well they just kept saying that he needs psychological help. I am not saying all of this to scare you, I know that plenty of PID kids go to school, but just prepare yourself. Which it sounds like you are doing. Thanks for letting me vent... Keep us posted, Wife to Tom, Mom to 6 yr Zach, ???(don't know the specific type) PID, GERD, chronic sinusitis, IVIG, At 08:40 PM 4/27/99 -0400, you wrote: > > >Ursula - & Macey (CVID) mom > >Thursday we'll meet with Macey's IEP team. We will begin to work on her >plan for next year. We'll meet again 3 days before school start. But we're >meeting now because it will take them all summer to contract for certain >needs Macey has for attending school. Of course all this is contingent on >her able to go in the fall. We will be asking to be able to sign her up >next month for a slot and then be able to structure her school days next >year and still be able to keep the slot. Macey will start school half days >for two to three days a week. Then go full time after a month or so. That >may upset the school or other parents who weren't able to get a slot in the >program. There are only 40 pre-k slots at this elementary. goes here >also and will be in the 1st grade. Her current kindergarten teacher and >other staff know of Macey has a PID and other health issues. So it would be >an easier transition at this school. > >I thought I'd ask the members who have school age PID children what extra >needs they've asked for at school. I have a few concerns that I think need >to be written into her plan. Let me know if these sound off base. Autumn, >I'm especially interested in your opinion. > >1. Since a patient can react for IVIG for up to 2 days after I feel that >someone in the school, in proximity to Macey, should be trained in pediatric >CPR and know how to administer the Epi-pen that she has prescribed for her. >I am though going to try and schedule as many infusions for Friday as I can. > >2. Macey needs filtered water available to her. Some elementary schools >here are already using bottled water to give medications so there's already >a contract for that. I thought a large tank (you know the one turned upside >down) would be good. There are already water fountains installed in every >classroom, I think that Macey should also have her own continuous water >source. Our County water supply is questionable and on top of that there is >a chicken processing plant being built and starting to operate in the >county. It has a drop-off into the water source for the county water. >That's a really hot debate here locally. > >3. Macey is on a low-sodium diet. I can't even begin to imagine how her >lunch and snack options will be approached. > >I'm sure I'll think of a ton of other things over the summer and once we're >closer to the school year her doctors said they will tell us what she needs >particularly. They won't contribute to the list now because they say " We'll >cross that bridge when we come to it " . What they don't understand is that >if I go in there 3 days before school start and start throwing all these >special needs at them then they'll say that they don't have time to set it >all up before school starts. This might delay her starting. So if I give >them some now and then the more doctor specific ones at the first of the >year then things might go smoother. I'm also going to make sure I have her >medical alert necklace ordered by then. > >See, aren't I an optimistic mommy. > > > > >------------------------------------------------------------------------ >New hobbies? New curiosities? New enthusiasms? >http://www.ONElist.com >Sign up for a new e-mail list today! >------------------------------------------------------------------------ >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. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 14, 1999 Report Share Posted May 14, 1999 I thought maybe everyone can help my cousin's friend. You will need to email her direct because she is not on our list yet...... In a message dated 5/13/99 10:59:16 PM Central Daylight Time, dmoore@... writes: << My name is Tonia , Laurie Stroope gave me your e-mail address which she received from an Aunt. I am contacting you in regards to your 4 yr. old son (I believe) who Laurie said had Pediatric Primary immune deficiency. My daughter just turned 5 the 27 of April and the doctors from children's hospital as well as the Drs. here believe that she was born with an immune disorder. She has been ill all of her life. She has always had trouble eating, going to the bathroom, her bowels as a baby was nothing but diarrhea, now she has trouble going. They also believe she may have a neural cell crest migration disorder that cause intestinal hypo motility, GE reflux, GU reflux, and other problems, along with this immune disorder, an ASD hole in her heart and they monitor her for hypertrophic cardiomyopathy (very strong family history). She has been referred to National Jewish Hospital in Denver for her immunology. The other she is being followed at the Children's Hospital in Denver. The head of the immunology department at TCH, Dr Shyra referred her to National Jewish. He felt they could do more for her there. Her immunology screening came back normal, so now it is more intensive. Would you be so kind as to fill me in on your childs condition and what it has detailed, the signs and symptoms. We all get so frustrated here not knowing what else to do. She mal-absorbs her food most of the time. Keeping weight on her is almost impossible. She will do good for a while and then she looses again, or get sick again. I would greatly appreciate any information you could give me. Tonia >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 14, 1999 Report Share Posted May 14, 1999 I thought maybe everyone can help my cousin's friend. You will need to email her direct because she is not on our list yet...... In a message dated 5/13/99 10:59:16 PM Central Daylight Time, dmoore@... writes: << My name is Tonia , Laurie Stroope gave me your e-mail address which she received from an Aunt. I am contacting you in regards to your 4 yr. old son (I believe) who Laurie said had Pediatric Primary immune deficiency. My daughter just turned 5 the 27 of April and the doctors from children's hospital as well as the Drs. here believe that she was born with an immune disorder. She has been ill all of her life. She has always had trouble eating, going to the bathroom, her bowels as a baby was nothing but diarrhea, now she has trouble going. They also believe she may have a neural cell crest migration disorder that cause intestinal hypo motility, GE reflux, GU reflux, and other problems, along with this immune disorder, an ASD hole in her heart and they monitor her for hypertrophic cardiomyopathy (very strong family history). She has been referred to National Jewish Hospital in Denver for her immunology. The other she is being followed at the Children's Hospital in Denver. The head of the immunology department at TCH, Dr Shyra referred her to National Jewish. He felt they could do more for her there. Her immunology screening came back normal, so now it is more intensive. Would you be so kind as to fill me in on your childs condition and what it has detailed, the signs and symptoms. We all get so frustrated here not knowing what else to do. She mal-absorbs her food most of the time. Keeping weight on her is almost impossible. She will do good for a while and then she looses again, or get sick again. I would greatly appreciate any information you could give me. Tonia >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 14, 1999 Report Share Posted May 14, 1999 I thought maybe everyone can help my cousin's friend. You will need to email her direct because she is not on our list yet...... In a message dated 5/13/99 10:59:16 PM Central Daylight Time, dmoore@... writes: << My name is Tonia , Laurie Stroope gave me your e-mail address which she received from an Aunt. I am contacting you in regards to your 4 yr. old son (I believe) who Laurie said had Pediatric Primary immune deficiency. My daughter just turned 5 the 27 of April and the doctors from children's hospital as well as the Drs. here believe that she was born with an immune disorder. She has been ill all of her life. She has always had trouble eating, going to the bathroom, her bowels as a baby was nothing but diarrhea, now she has trouble going. They also believe she may have a neural cell crest migration disorder that cause intestinal hypo motility, GE reflux, GU reflux, and other problems, along with this immune disorder, an ASD hole in her heart and they monitor her for hypertrophic cardiomyopathy (very strong family history). She has been referred to National Jewish Hospital in Denver for her immunology. The other she is being followed at the Children's Hospital in Denver. The head of the immunology department at TCH, Dr Shyra referred her to National Jewish. He felt they could do more for her there. Her immunology screening came back normal, so now it is more intensive. Would you be so kind as to fill me in on your childs condition and what it has detailed, the signs and symptoms. We all get so frustrated here not knowing what else to do. She mal-absorbs her food most of the time. Keeping weight on her is almost impossible. She will do good for a while and then she looses again, or get sick again. I would greatly appreciate any information you could give me. Tonia >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 14, 1999 Report Share Posted May 14, 1999 Dear Dean: My daughter was a patient of National Jewish hospital for the last four years. There is an immunologist at the hospital named Dr Boguniewicz ( Dr. When we arrived after Desert Storm in Denver and my daughter could not eat solid food and could not walk and talk. This wonderful hospital gave me back a child that now is on the principals list and is still with us today. They also still consult with our immunologist here in Phoenix to what is the best course of treament. We just had to make the decision with their help to start IVIG in February. You are blessed to be in a town with such experitise as the hospitals in Denver. Keep the faith and let us know how your daughter is doing. If you need anything else there are wonderful people at this website also. In our prayers, annette mom to cvid asthmatic 10 year old daughter P.S. Please give my warmest regards to the staff of National Jewish Center from the Lennon Family >From: MATHERS313@... >Reply-To: PedPIDonelist >To: PedPIDonelist >Subject: Fwd: (no subject) >Date: Fri, 14 May 1999 17:12:17 EDT > >I thought maybe everyone can help my cousin's friend. You will need to >email >her direct because she is not on our list yet...... > >In a message dated 5/13/99 10:59:16 PM Central Daylight Time, >dmoore@... writes: > ><< My name is Tonia , Laurie Stroope gave me your e-mail address which > she received from an Aunt. I am contacting you in regards to your 4 yr. > old son (I believe) who Laurie said had Pediatric Primary immune > deficiency. My daughter just turned 5 the 27 of April and the doctors > from children's hospital as well as the Drs. here believe that she was > born with an immune disorder. She has been ill all of her life. She has > always had trouble eating, going to the bathroom, her bowels as a baby > was nothing but diarrhea, now she has trouble going. They also believe > she may have a neural cell crest migration disorder that cause > intestinal hypo motility, GE reflux, GU reflux, and other problems, > along with this immune disorder, an > ASD hole in her heart and they monitor her for hypertrophic > cardiomyopathy (very strong family history). She has been referred to > National Jewish Hospital in Denver for her immunology. The other she is > being followed at the Children's Hospital in Denver. The head of the > immunology department at TCH, Dr Shyra referred her to National Jewish. > He felt they could do more for her there. Her immunology screening came > back normal, so now it is more intensive. > > Would you be so kind as to fill me in on your childs condition and what > it has detailed, the signs and symptoms. We all get so frustrated here > not knowing what else to do. She mal-absorbs her food most of the time. > Keeping weight on her is almost impossible. She will do good for a while > and then she looses again, or get sick again. > I would greatly appreciate any information you could give me. Tonia > >> > ><< message3.txt >> _______________________________________________________________ Get Free Email and Do More On The Web. Visit http://www.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 14, 1999 Report Share Posted May 14, 1999 Dear Dean: My daughter was a patient of National Jewish hospital for the last four years. There is an immunologist at the hospital named Dr Boguniewicz ( Dr. When we arrived after Desert Storm in Denver and my daughter could not eat solid food and could not walk and talk. This wonderful hospital gave me back a child that now is on the principals list and is still with us today. They also still consult with our immunologist here in Phoenix to what is the best course of treament. We just had to make the decision with their help to start IVIG in February. You are blessed to be in a town with such experitise as the hospitals in Denver. Keep the faith and let us know how your daughter is doing. If you need anything else there are wonderful people at this website also. In our prayers, annette mom to cvid asthmatic 10 year old daughter P.S. Please give my warmest regards to the staff of National Jewish Center from the Lennon Family >From: MATHERS313@... >Reply-To: PedPIDonelist >To: PedPIDonelist >Subject: Fwd: (no subject) >Date: Fri, 14 May 1999 17:12:17 EDT > >I thought maybe everyone can help my cousin's friend. You will need to >email >her direct because she is not on our list yet...... > >In a message dated 5/13/99 10:59:16 PM Central Daylight Time, >dmoore@... writes: > ><< My name is Tonia , Laurie Stroope gave me your e-mail address which > she received from an Aunt. I am contacting you in regards to your 4 yr. > old son (I believe) who Laurie said had Pediatric Primary immune > deficiency. My daughter just turned 5 the 27 of April and the doctors > from children's hospital as well as the Drs. here believe that she was > born with an immune disorder. She has been ill all of her life. She has > always had trouble eating, going to the bathroom, her bowels as a baby > was nothing but diarrhea, now she has trouble going. They also believe > she may have a neural cell crest migration disorder that cause > intestinal hypo motility, GE reflux, GU reflux, and other problems, > along with this immune disorder, an > ASD hole in her heart and they monitor her for hypertrophic > cardiomyopathy (very strong family history). She has been referred to > National Jewish Hospital in Denver for her immunology. The other she is > being followed at the Children's Hospital in Denver. The head of the > immunology department at TCH, Dr Shyra referred her to National Jewish. > He felt they could do more for her there. Her immunology screening came > back normal, so now it is more intensive. > > Would you be so kind as to fill me in on your childs condition and what > it has detailed, the signs and symptoms. We all get so frustrated here > not knowing what else to do. She mal-absorbs her food most of the time. > Keeping weight on her is almost impossible. She will do good for a while > and then she looses again, or get sick again. > I would greatly appreciate any information you could give me. Tonia > >> > ><< message3.txt >> _______________________________________________________________ Get Free Email and Do More On The Web. Visit http://www.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 14, 1999 Report Share Posted May 14, 1999 Dear Dean: My daughter was a patient of National Jewish hospital for the last four years. There is an immunologist at the hospital named Dr Boguniewicz ( Dr. When we arrived after Desert Storm in Denver and my daughter could not eat solid food and could not walk and talk. This wonderful hospital gave me back a child that now is on the principals list and is still with us today. They also still consult with our immunologist here in Phoenix to what is the best course of treament. We just had to make the decision with their help to start IVIG in February. You are blessed to be in a town with such experitise as the hospitals in Denver. Keep the faith and let us know how your daughter is doing. If you need anything else there are wonderful people at this website also. In our prayers, annette mom to cvid asthmatic 10 year old daughter P.S. Please give my warmest regards to the staff of National Jewish Center from the Lennon Family >From: MATHERS313@... >Reply-To: PedPIDonelist >To: PedPIDonelist >Subject: Fwd: (no subject) >Date: Fri, 14 May 1999 17:12:17 EDT > >I thought maybe everyone can help my cousin's friend. You will need to >email >her direct because she is not on our list yet...... > >In a message dated 5/13/99 10:59:16 PM Central Daylight Time, >dmoore@... writes: > ><< My name is Tonia , Laurie Stroope gave me your e-mail address which > she received from an Aunt. I am contacting you in regards to your 4 yr. > old son (I believe) who Laurie said had Pediatric Primary immune > deficiency. My daughter just turned 5 the 27 of April and the doctors > from children's hospital as well as the Drs. here believe that she was > born with an immune disorder. She has been ill all of her life. She has > always had trouble eating, going to the bathroom, her bowels as a baby > was nothing but diarrhea, now she has trouble going. They also believe > she may have a neural cell crest migration disorder that cause > intestinal hypo motility, GE reflux, GU reflux, and other problems, > along with this immune disorder, an > ASD hole in her heart and they monitor her for hypertrophic > cardiomyopathy (very strong family history). She has been referred to > National Jewish Hospital in Denver for her immunology. The other she is > being followed at the Children's Hospital in Denver. The head of the > immunology department at TCH, Dr Shyra referred her to National Jewish. > He felt they could do more for her there. Her immunology screening came > back normal, so now it is more intensive. > > Would you be so kind as to fill me in on your childs condition and what > it has detailed, the signs and symptoms. We all get so frustrated here > not knowing what else to do. She mal-absorbs her food most of the time. > Keeping weight on her is almost impossible. She will do good for a while > and then she looses again, or get sick again. > I would greatly appreciate any information you could give me. Tonia > >> > ><< message3.txt >> _______________________________________________________________ Get Free Email and Do More On The Web. Visit http://www.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 1999 Report Share Posted May 16, 1999 Dear Annette: We also live in Phoenix. I was hoping maybe you might give me some more info on National Jewish Hospital. I really need to find a place to take Tyler where I'm sure they know what they are doing. I really have a problem trusting Docs who have never treated people with what my son has. I have heard about this hospital, but never actually talked to anyone who had been there. That is wonderful what they were able to do for your daughter. Thank You Sheble(Tyler's Mom)Hyper IgE syndrome annette lennon wrote: > > > Dear Dean: My daughter was a patient of National Jewish hospital for the > last four years. There is an immunologist at the hospital named Dr > Boguniewicz ( Dr. When we arrived after Desert Storm in Denver and my > daughter could not eat solid food and could not walk and talk. > This wonderful hospital gave me back a child that now is on the principals > list and is still with us today. They also still consult with our > immunologist here in Phoenix to what is the best course of treament. We just > had to make the decision with their help to start IVIG in February. You are > blessed to be in a town with such experitise as the hospitals in Denver. > Keep the faith and let us know how your daughter is doing. If you need > anything else there are wonderful people at this website also. > In our prayers, > annette mom to cvid asthmatic 10 year old daughter > P.S. Please give my warmest regards to the staff of National Jewish Center > from the Lennon Family > > >From: MATHERS313@... > >Reply-To: PedPIDonelist > >To: PedPIDonelist > >Subject: Fwd: (no subject) > >Date: Fri, 14 May 1999 17:12:17 EDT > > > >I thought maybe everyone can help my cousin's friend. You will need to > >email > >her direct because she is not on our list yet...... > > > >In a message dated 5/13/99 10:59:16 PM Central Daylight Time, > >dmoore@... writes: > > > ><< My name is Tonia , Laurie Stroope gave me your e-mail address which > > she received from an Aunt. I am contacting you in regards to your 4 yr. > > old son (I believe) who Laurie said had Pediatric Primary immune > > deficiency. My daughter just turned 5 the 27 of April and the doctors > > from children's hospital as well as the Drs. here believe that she was > > born with an immune disorder. She has been ill all of her life. She has > > always had trouble eating, going to the bathroom, her bowels as a baby > > was nothing but diarrhea, now she has trouble going. They also believe > > she may have a neural cell crest migration disorder that cause > > intestinal hypo motility, GE reflux, GU reflux, and other problems, > > along with this immune disorder, an > > ASD hole in her heart and they monitor her for hypertrophic > > cardiomyopathy (very strong family history). She has been referred to > > National Jewish Hospital in Denver for her immunology. The other she is > > being followed at the Children's Hospital in Denver. The head of the > > immunology department at TCH, Dr Shyra referred her to National Jewish. > > He felt they could do more for her there. Her immunology screening came > > back normal, so now it is more intensive. > > > > Would you be so kind as to fill me in on your childs condition and what > > it has detailed, the signs and symptoms. We all get so frustrated here > > not knowing what else to do. She mal-absorbs her food most of the time. > > Keeping weight on her is almost impossible. She will do good for a while > > and then she looses again, or get sick again. > > I would greatly appreciate any information you could give me. Tonia > > >> > > > ><< message3.txt >> > > _______________________________________________________________ > Get Free Email and Do More On The Web. Visit http://www.msn.com > > ------------------------------------------------------------------------ > ONElist members are using Shared Files in great ways! > http://www.onelist.com > Are you? If not, see our homepage for details. > ------------------------------------------------------------------------ > 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. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 1999 Report Share Posted May 16, 1999 Dear and , How are you? National Jewish is the best research and treatment center in the southwest region. My brother who is a physician referred us in eight and a half years ago. They saved my daughter's life. Our immunologist here in Phoenix Dr. Manning also has a colleague was trained at National Jewish hospital. I do not know if it is allright but here is his phone number. 248-9129 Also if you want a work up from Nationl Jewish they have a live in program where your family stays with the child for a week or a few days while they do testing. Are you under an HMO ? They would need a referral for you to go up which is usually no problem. They also have a toll free number 1-. IF there is anything else we may do for you, please let us know.. We would love to talk to you or visit. We have never had contact with any other family since my daughter's diagnosis. Our phone number is 975-0319. Also this website has been a prayer answered for us because you are no longer isolated from other families like ours. God Bless and take care sincerely annette and bob lennon > >Reply-To: PedPIDonelist >To: PedPIDonelist >Subject: Re: Fwd: (no subject) >Date: Sun, 16 May 1999 08:05:40 +0000 > > > >Dear Annette: > >We also live in Phoenix. I was hoping maybe you might give me some >more info on National Jewish Hospital. I really need to find a place to >take Tyler where I'm sure they know what they are doing. I really have a >problem trusting Docs who have never treated people with what my son has. >I have heard about this hospital, but never actually talked to anyone who >had >been there. That is wonderful what they were able to do for your daughter. > >Thank You > Sheble(Tyler's Mom)Hyper IgE syndrome >annette lennon wrote: > > > > > > > Dear Dean: My daughter was a patient of National Jewish hospital for >the > > last four years. There is an immunologist at the hospital named Dr > > Boguniewicz ( Dr. When we arrived after Desert Storm in Denver and my > > daughter could not eat solid food and could not walk and talk. > > This wonderful hospital gave me back a child that now is on the >principals > > list and is still with us today. They also still consult with our > > immunologist here in Phoenix to what is the best course of treament. We >just > > had to make the decision with their help to start IVIG in February. You >are > > blessed to be in a town with such experitise as the hospitals in Denver. > > Keep the faith and let us know how your daughter is doing. If you need > > anything else there are wonderful people at this website also. > > In our prayers, > > annette mom to cvid asthmatic 10 year old daughter > > P.S. Please give my warmest regards to the staff of National Jewish >Center > > from the Lennon Family > > > > >From: MATHERS313@... > > >Reply-To: PedPIDonelist > > >To: PedPIDonelist > > >Subject: Fwd: (no subject) > > >Date: Fri, 14 May 1999 17:12:17 EDT > > > > > >I thought maybe everyone can help my cousin's friend. You will need to > > >email > > >her direct because she is not on our list yet...... > > > > > >In a message dated 5/13/99 10:59:16 PM Central Daylight Time, > > >dmoore@... writes: > > > > > ><< My name is Tonia , Laurie Stroope gave me your e-mail address >which > > > she received from an Aunt. I am contacting you in regards to your 4 >yr. > > > old son (I believe) who Laurie said had Pediatric Primary immune > > > deficiency. My daughter just turned 5 the 27 of April and the doctors > > > from children's hospital as well as the Drs. here believe that she >was > > > born with an immune disorder. She has been ill all of her life. She >has > > > always had trouble eating, going to the bathroom, her bowels as a >baby > > > was nothing but diarrhea, now she has trouble going. They also >believe > > > she may have a neural cell crest migration disorder that cause > > > intestinal hypo motility, GE reflux, GU reflux, and other problems, > > > along with this immune disorder, an > > > ASD hole in her heart and they monitor her for hypertrophic > > > cardiomyopathy (very strong family history). She has been referred to > > > National Jewish Hospital in Denver for her immunology. The other she >is > > > being followed at the Children's Hospital in Denver. The head of the > > > immunology department at TCH, Dr Shyra referred her to National >Jewish. > > > He felt they could do more for her there. Her immunology screening >came > > > back normal, so now it is more intensive. > > > > > > Would you be so kind as to fill me in on your childs condition and >what > > > it has detailed, the signs and symptoms. We all get so frustrated >here > > > not knowing what else to do. She mal-absorbs her food most of the >time. > > > Keeping weight on her is almost impossible. She will do good for a >while > > > and then she looses again, or get sick again. > > > I would greatly appreciate any information you could give me. Tonia > > > >> > > > > > ><< message3.txt >> > > > > _______________________________________________________________ > > Get Free Email and Do More On The Web. Visit http://www.msn.com > > > > ------------------------------------------------------------------------ > > ONElist members are using Shared Files in great ways! > > http://www.onelist.com > > Are you? If not, see our homepage for details. > > ------------------------------------------------------------------------ > > 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. > > > > >------------------------------------------------------------------------ >Looking for a new hobby? Want to make a new friend? >http://www.onelist.com >Come join one of the 145,000 email communities at ONElist! >------------------------------------------------------------------------ >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. _______________________________________________________________ Get Free Email and Do More On The Web. Visit http://www.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 1999 Report Share Posted May 17, 1999 Autumn, Good luck with Mark's MRI, wish I could have been more help try and take it easy. Amber, welcome aboard and you are in a good support group. Also very knowledgeable. annette, mom 10 year old cvid asthmatic >From: Autti@... >Reply-To: PedPIDonelist >To: PedPIDonelist >Subject: Re: (no subject) >Date: Mon, 17 May 1999 08:23:51 EDT > >From: Autti@... > > > >Thanks for the well wishes from everyone. We are off to get Mark his MRI >this morning and then we have to go from there to Children's Hospital in >Detroit to get a new Mickey-J button (his feeding tube) replaced as the >balloon ruptured over the weekend. Tomorrow is neurology...ARGH..does it >ever end???? > >Amber~Welcome to the group. You mentioned that your girls have >aggammaglobulinemia...do they have Bruton's? I know what it is like to >have >both of your children sick...both of my boys have serious health problems. >At least we have this group as a safe place to " vent " which I have been >doing >a lot of lately ) >Hope you find this group helpful. > >Annette~I am forwarding the information you sent me over the weekend to >'s physician...again thank you very much. > >Ursula~Ditto to you ) > >Gotta run....long day ahead!!! > >Autumn mom to Mark Cd5-Cd19 PID/ Samter's syndrome, GERD, A1A > >------------------------------------------------------------------------ >Did you know ONElist has over 300 Star Wars lists? >http://www.ONElist.com >Join one today! >------------------------------------------------------------------------ >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. > _______________________________________________________________ Get Free Email and Do More On The Web. Visit http://www.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 1999 Report Share Posted May 17, 1999 Thanks for the well wishes from everyone. We are off to get Mark his MRI this morning and then we have to go from there to Children's Hospital in Detroit to get a new Mickey-J button (his feeding tube) replaced as the balloon ruptured over the weekend. Tomorrow is neurology...ARGH..does it ever end???? Amber~Welcome to the group. You mentioned that your girls have aggammaglobulinemia...do they have Bruton's? I know what it is like to have both of your children sick...both of my boys have serious health problems. At least we have this group as a safe place to " vent " which I have been doing a lot of lately ) Hope you find this group helpful. Annette~I am forwarding the information you sent me over the weekend to 's physician...again thank you very much. Ursula~Ditto to you ) Gotta run....long day ahead!!! Autumn mom to Mark Cd5-Cd19 PID/ Samter's syndrome, GERD, A1A Quote Link to comment Share on other sites More sharing options...
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