Guest guest Posted May 3, 2001 Report Share Posted May 3, 2001 Charlotte, My daughter Autumn is IgG deficient and I can certainly appreciate your struggles. We too have faced the questions from family members about whether or not she's taking too much medicine. Autumn is 3 and not a day goes by that we don't take at least 5 medications. That's a lot for such a young child. They tell me she's not a good candidate for IVIG so we are waiting. We did maintenance antibiotics during the winter months & just recently took her off them. Maybe this summer we can drop some of her other meds and see how well she does. At her last test, her IgG level was 417, just barely normal. Still, we will retest in June to see how things are going. I noticed you mentioned Cook's Children's Hospital. Where are you from? We are in Midland, Texas and we've often discussed taking her to Cook's in Ft. Worth. Ray, mother to Tabitha (age 5), Autumn, age 3 (IgG def., asthma, chronic sinusitis, and allergies), and Duncan Avery due 5/17/01--and we're still waiting!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2001 Report Share Posted May 4, 2001 dear sandra, we live in burleson,tx 15 miles south of ft. worth cook childrens hospital is in ft. worth texas we see dr murphy there. he is an infectious disease dr and he is great. coltons last igg was 324 and were probably gonna start ivig in 2 months he is on zyrtec for allergies, and bactrim is the antibiotic were using now. theyve done a work up on colton and he only responds to a few antibiotics. when he had strep pnemo at 6 months we found out hes allergic to clindyamycin which was the only antibiotic that killed his infection totally so we went too rocephin. if you need any telephone numbers of the hospital let me know they have a ronald mcdonald house for people out of town to so just let me know its nice knowing someone else is going through the same thing and your close by hope every thing goes ok for you all. charlotte charlotteswebpad@... mother of brandon 15, jordan 11, colton 2 {cvid igg defecient sinus infections, allergies, arthritis, excema} Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2001 Report Share Posted May 4, 2001 dear sandra, we live in burleson,tx 15 miles south of ft. worth cook childrens hospital is in ft. worth texas we see dr murphy there. he is an infectious disease dr and he is great. coltons last igg was 324 and were probably gonna start ivig in 2 months he is on zyrtec for allergies, and bactrim is the antibiotic were using now. theyve done a work up on colton and he only responds to a few antibiotics. when he had strep pnemo at 6 months we found out hes allergic to clindyamycin which was the only antibiotic that killed his infection totally so we went too rocephin. if you need any telephone numbers of the hospital let me know they have a ronald mcdonald house for people out of town to so just let me know its nice knowing someone else is going through the same thing and your close by hope every thing goes ok for you all. charlotte charlotteswebpad@... mother of brandon 15, jordan 11, colton 2 {cvid igg defecient sinus infections, allergies, arthritis, excema} Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2001 Report Share Posted May 5, 2001 In a message dated 5/5/2001 7:38:14 PM Central Daylight Time, sandraray@... writes: > Ray, mother to Tabitha (age 5), Autumn, age 3 (IgG def., > asthma, chronic sinusitis, and allergies), and Duncan Avery due > 5/17/01--and getting more stubborn by the day! > > , Did I miss something here? (Yes, I'm an AOL person. I sent a post that took two days to get to the group!) Last I heard you were on your way... What's going on with baby Duncan--False Labor?? Hope all goes well....and soon! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2001 Report Share Posted May 6, 2001 I don't think I'd call it false labor--more like stopping & starting. I'm making some progress, but it's soooo slow! I go to the dr in the morning, so keep your fingers crossed! Ray, mother to Tabitha (age 5), Autumn, age 3 (IgG def., asthma, chronic sinusitis, and alleriges), and Duncan Avery due 5/17/01 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2001 Report Share Posted May 6, 2001 I don't think I'd call it false labor--more like stopping & starting. I'm making some progress, but it's soooo slow! I go to the dr in the morning, so keep your fingers crossed! Ray, mother to Tabitha (age 5), Autumn, age 3 (IgG def., asthma, chronic sinusitis, and alleriges), and Duncan Avery due 5/17/01 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2001 Report Share Posted May 6, 2001 Charlotte, My aunt's name is Darla . She works in the deli at the Wal- Mart. Not her choice, really. Her husband died almost 5 years ago and left her enough in insurance $ to last her through retirement. Her daughter & significant other thought she needed a job to get out & meet new people. She hates the work, but she's so responsible she keeps going to work every day. I read in a previous post that you would have to go to Houston for IVIG. How come? There are so many good hospitals in the Dallas/Ft. Worth area, surely there is a closer hospital. You'd think Cook's being the children's hospital that they are would be able to do IVIG with PID kids. Ray, mother to Tabitha (age 5), Autumn, age 3 (IgG def., asthma, chronic sinusitis, and allergies), and Duncan Avery due 5/17/01 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2001 Report Share Posted May 6, 2001 Charlotte, My aunt's name is Darla . She works in the deli at the Wal- Mart. Not her choice, really. Her husband died almost 5 years ago and left her enough in insurance $ to last her through retirement. Her daughter & significant other thought she needed a job to get out & meet new people. She hates the work, but she's so responsible she keeps going to work every day. I read in a previous post that you would have to go to Houston for IVIG. How come? There are so many good hospitals in the Dallas/Ft. Worth area, surely there is a closer hospital. You'd think Cook's being the children's hospital that they are would be able to do IVIG with PID kids. Ray, mother to Tabitha (age 5), Autumn, age 3 (IgG def., asthma, chronic sinusitis, and allergies), and Duncan Avery due 5/17/01 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2001 Report Share Posted May 6, 2001 Charlotte, My aunt's name is Darla . She works in the deli at the Wal- Mart. Not her choice, really. Her husband died almost 5 years ago and left her enough in insurance $ to last her through retirement. Her daughter & significant other thought she needed a job to get out & meet new people. She hates the work, but she's so responsible she keeps going to work every day. I read in a previous post that you would have to go to Houston for IVIG. How come? There are so many good hospitals in the Dallas/Ft. Worth area, surely there is a closer hospital. You'd think Cook's being the children's hospital that they are would be able to do IVIG with PID kids. Ray, mother to Tabitha (age 5), Autumn, age 3 (IgG def., asthma, chronic sinusitis, and allergies), and Duncan Avery due 5/17/01 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2001 Report Share Posted May 8, 2001 Charlotte, Tabitha's cough is sounding better today. I decided that tomorrow we'll try to reduce breathing treatments to every 6 hours. Autumn is doing remarkably well right now. She's just taking her regular meds. If she keeps this up, I'll make an appointment in June to see what meds we can reduce and do some retesting of the immune system. Our ped takes the last 2 weeks of May off every year for vacation, so I'm trying to plan around his schedule. My husband and I are talking about having Tabitha's allergies tested if she continues to get sick with her asthma through the summer. She's never been tested; we just know she's got allergies. It would be helpful to know what she's allergic to so we would know what to avoid. I don't think any of her allergies are food related. I, myself, have allergies to dust & grass. I wouldn't be surprised if there were a few others. Unfortunately, both of my kids inherited my allergy tendencies. I hope you can at least do IVIG in Dallas (if it comes to that). Dallas is so much closer than Houston. I would dread that drive every 3-4 weeks. I've got family in both places, but still wouldn't want to make the trip on a regular basis. Ray, mother to Tabitha (age 5), Autumn, age 3 (IgG def., asthma, chronic sinusitis, and allergies), and Duncan Avery due 5/17/01 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2001 Report Share Posted May 8, 2001 Charlotte, Tabitha's cough is sounding better today. I decided that tomorrow we'll try to reduce breathing treatments to every 6 hours. Autumn is doing remarkably well right now. She's just taking her regular meds. If she keeps this up, I'll make an appointment in June to see what meds we can reduce and do some retesting of the immune system. Our ped takes the last 2 weeks of May off every year for vacation, so I'm trying to plan around his schedule. My husband and I are talking about having Tabitha's allergies tested if she continues to get sick with her asthma through the summer. She's never been tested; we just know she's got allergies. It would be helpful to know what she's allergic to so we would know what to avoid. I don't think any of her allergies are food related. I, myself, have allergies to dust & grass. I wouldn't be surprised if there were a few others. Unfortunately, both of my kids inherited my allergy tendencies. I hope you can at least do IVIG in Dallas (if it comes to that). Dallas is so much closer than Houston. I would dread that drive every 3-4 weeks. I've got family in both places, but still wouldn't want to make the trip on a regular basis. Ray, mother to Tabitha (age 5), Autumn, age 3 (IgG def., asthma, chronic sinusitis, and allergies), and Duncan Avery due 5/17/01 Quote Link to comment Share on other sites More sharing options...
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