Guest guest Posted March 4, 1999 Report Share Posted March 4, 1999 Dale--- I guess I am the one that is confused. I did not realize that when someone submits a question it would go to the entire group's e-mail...I am sorry if I offended you. I just thought the question would go to the person that you are requesting the information from.....Sorry... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 1999 Report Share Posted March 4, 1999 SUE: Sorry if I sounded abrupt. I thought I might be the one messed up. I'm new at all this stuff, too. I just want this group to succeed. Right now there's so much information coming in and it's so reassuring that we're not the only ones running around in circles spending the majority of our days trouble-shooting for our kids. Katy's not up yet this morning, I'm letting her sleep as late as possible because she's covered with a viral rash that is very itchy. She reacts to Benadryl and Atarax, so we just have to use cool baths and do a lot of walking. She was up til 2 last night and quite frankly -- I'd rather she'd sleep right now!!!! , my husband, came home last night with a sore throat and head cold -- I wanted to kick him out of the house! Instead I ordered him not to touch Katy or anything she might touch! The next thing I know, she's cuddling in his lap -- ARGH!!!!! She needs her Daddy and it's absolutely pointless to try to keep those two apart! The good part is that I got to go to bed early and leave her itchies with him!!! Katy has lots of skin stuff with no solutions. She has extremely sensitive skin - we've finally found a tape to use that doesn't pull her skin off -- it's called Hypafix. She has tiny bumps that come up on her fingers and hands that look like seed warts, but are filled with a clear liquid. They only hurt when they become large enough to stretch the skin. Sometimes they burst and others just recede. They last a couple of days and seem to come in batches. It's practically continuous. But we've never managed to catch large ones for the doctor's visits! Is that molluscum? She also has had her hands covered with dark red polka dots that feel like needles sticking into her hands. But since it only lasts for about an hour, we've never been able to show the doctor. That happens about 4 or 5 times a year and she refuses to move her hands or fingers during an episode. It sounds like nerve endings being inflammed to me -- but since it goes away, no one seems concerned. We also see little yellow blisters all over her scalp occasionally. Since she's at the age of using different hair products, we usually blame it on a new product, but honestly, it looks and acts more like a virus. It just comes and goes when it chooses! It makes her head very tender and hard to brush her hair. If they get opened, they leave a bloody mark -- if left alone, they'll dry up and peel off. Then we have rashes that follow any medication, and rashes that follow any virus, and rashes that follow sweating, and rashes..., and rashes..., and....... During dental braces, her othrodontist recommended Peroxyl mouth wash. That really seemed to clear up mouth sores faster than anything and maybe prevent some -- but Orabase was a life saver! Gotta get my day started. May the Lord send you a fresh breath of vision and energy today. Spring will come! In His service, Dale Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 1999 Report Share Posted March 4, 1999 SUE: Sorry if I sounded abrupt. I thought I might be the one messed up. I'm new at all this stuff, too. I just want this group to succeed. Right now there's so much information coming in and it's so reassuring that we're not the only ones running around in circles spending the majority of our days trouble-shooting for our kids. Katy's not up yet this morning, I'm letting her sleep as late as possible because she's covered with a viral rash that is very itchy. She reacts to Benadryl and Atarax, so we just have to use cool baths and do a lot of walking. She was up til 2 last night and quite frankly -- I'd rather she'd sleep right now!!!! , my husband, came home last night with a sore throat and head cold -- I wanted to kick him out of the house! Instead I ordered him not to touch Katy or anything she might touch! The next thing I know, she's cuddling in his lap -- ARGH!!!!! She needs her Daddy and it's absolutely pointless to try to keep those two apart! The good part is that I got to go to bed early and leave her itchies with him!!! Katy has lots of skin stuff with no solutions. She has extremely sensitive skin - we've finally found a tape to use that doesn't pull her skin off -- it's called Hypafix. She has tiny bumps that come up on her fingers and hands that look like seed warts, but are filled with a clear liquid. They only hurt when they become large enough to stretch the skin. Sometimes they burst and others just recede. They last a couple of days and seem to come in batches. It's practically continuous. But we've never managed to catch large ones for the doctor's visits! Is that molluscum? She also has had her hands covered with dark red polka dots that feel like needles sticking into her hands. But since it only lasts for about an hour, we've never been able to show the doctor. That happens about 4 or 5 times a year and she refuses to move her hands or fingers during an episode. It sounds like nerve endings being inflammed to me -- but since it goes away, no one seems concerned. We also see little yellow blisters all over her scalp occasionally. Since she's at the age of using different hair products, we usually blame it on a new product, but honestly, it looks and acts more like a virus. It just comes and goes when it chooses! It makes her head very tender and hard to brush her hair. If they get opened, they leave a bloody mark -- if left alone, they'll dry up and peel off. Then we have rashes that follow any medication, and rashes that follow any virus, and rashes that follow sweating, and rashes..., and rashes..., and....... During dental braces, her othrodontist recommended Peroxyl mouth wash. That really seemed to clear up mouth sores faster than anything and maybe prevent some -- but Orabase was a life saver! Gotta get my day started. May the Lord send you a fresh breath of vision and energy today. Spring will come! In His service, Dale Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 1999 Report Share Posted March 4, 1999 Sue, we're all still learning and growing and hopefully we will all be a valuable resource to each other. The kids are what's most important here and I think there's going to be a learning curve. Hope the boys are doing well. Ursula Holleman Re: Question???? From: MEACH9960@... Dale--- I guess I am the one that is confused. I did not realize that when someone submits a question it would go to the entire group's e-mail...I am sorry if I offended you. I just thought the question would go to the person that you are requesting the information from.....Sorry... ------------------------------------------------------------------------ Ideas on how we can improve ONElist? http://www.onelist.com Check out the Suggestion Box feature on our new web site ------------------------------------------------------------------------ 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 Dale, I started keeping a Poloraid Camera nearby to capture those fleeting skin issues. I take them to the Drs. - they must think I'm nuts - but it helped. They were able to see Kinsey's molluscum when they became infected. It seem to always happen on weekends and they would start oral antibiotics that would improve them rather quickly. What you described didn't sound like the molluscum we had but who knows, try to get a picture. If nothing else it might ease your mind. Take Care Gail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 1999 Report Share Posted October 5, 1999 Macey's asthma is triggered by her infections. She has intrinsic asthma which means a problem internally causes her asthma flare-ups. It can be a virus, an infection, stress to a body part (sprain or broken limb) and sometimes surgery causes a flare (during her port removal and once after a sinus surgery). But if you think about it if the small airways are closing up due to allergens and asthma develops doesn't it seem logical that things don't pass through those airways as well and can get clogged up and infected. can't win either way can ya. Ursula - & Macey (4 yr old w/CVID) mom Question???? The more I watch , it seems as though he has Asthma. Could Asthma be the cause of all his infections, or does it just contribute to? Any feedback would be great! Thanks! 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 October 6, 1999 Report Share Posted October 6, 1999 : Both my boy's pulmo explained the asthma to me like this: They have different degrees and types of asthma. has an episode only from infections, and has episodes from anything from weather changes, to strong odors--perfume is the worst!- to infections. I don't think asthma can cause an infection, but an infection can trigger an episode. It would be a good question to bring up to the doctor so you both can work out an aggressive plan of action and aslso as a way for you to help monitor what is triggering his coughing and wheezing. Good luck. --mom to --dysgammaglobulinemia; luekemia-in remission Question???? > > >The more I watch , it seems as though he has Asthma. Could Asthma be >the cause of all his infections, or does it just contribute to? > >Any feedback would be great! >Thanks! > > >>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...
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