Guest guest Posted January 8, 2006 Report Share Posted January 8, 2006 Jill, Ashton is on a billboard in our town. The nursing agency that comes to our house to administer her IVIG asked her to be on one for them. I asked that it include her diagnosis so people would ask more questions. They took a picture of her with her nurse. She is wearing her soccer uniform. It states, " Because of you I can play soccer. " Then it gives her first name, age and diagnosis. It really turned out nice. I figure anything we can do to make people aware of PID's the better. Becki, We see a dermatologist who has been freezing her moluscum and warts. A few had to be frozen a couple of times. The warts are the longest in going away. We are finally down to one area on her foot. She is taking extra B12 under the tongue. We just keep watching for new ones, and have them frozen (or burned however you look at it) as soon as we notice them. For us, it seems the faster you have them done, the better the results. The only warts that haven't gone away are the original ones. We have been dealing with this for a year or more. We also keep the skin moisturizer, Cetaphil cream on the skin. The dermatologist is very adamant about keeping the moisturizer on to help prevent the cracks in the skin where " things " can get in easily. Cetaphil doesn't have any of the irritants like Lanolin in it. I can use it to help keep my eczema under control. Some fo the other loitions actually give me breakouts of eczema. I am taking Tagamet for viral issues. I have chronic mono and have started the Tagamet routine. It has really helped. My glands aren't swollen all the time now. I would think that it would help with other viruses too. Good luck with this. I hate it for the kids. It hurts having the warts done. L Mom to Ashton 12 CVID, Asthma, Dyslexia & Marina 9 Asthma Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2006 Report Share Posted January 8, 2006 , That is awesome about the billboard! I would love to see more of those. People just always look at me strange when I tell them Reagon's diagnosis. I have even had a lot of people in the medical field ask exactly what it means. I have been praying that we will have a better grip on the molluscum by this summer. This will be her first year in preK and you know how other kids ask questions. We have spent the last 2 summers in capris and no sleeveless shirts because she was covered in them. We also have a really good grip on her eczema (went to National Jewish & learned the " wet wrap " trick) now, so hopefully that will help. Her body seems to be fighting them...she just keeps getting new ones. She has some now that get really, big, swollen, red & are very sore. They swell up then pop and drain all this yucky stuff. I was worried about staff (she has tested positive to a rare form of it on her skin), but her dr. said no, that it was only her body fighting the molluscum. Has Asthon's ever done this? I've always read the molluscum don't scar, but Reagon is covered in scars from them. It's all very frustrating! I will keep up the Tagament though...maybe between that and trying the covering technique we may have a shot at this working. Thanks again, Becki Reagon 4 yrs. CVID, asthma, allergies, GERD From: Nanashmar@... Sent: Sunday, January 08, 2006 10:24 AM Subject: Re: Digest Number 2705 Jill, Ashton is on a billboard in our town. The nursing agency that comes to our house to administer her IVIG asked her to be on one for them. I asked that it include her diagnosis so people would ask more questions. They took a picture of her with her nurse. She is wearing her soccer uniform. It states, " Because of you I can play soccer. " Then it gives her first name, age and diagnosis. It really turned out nice. I figure anything we can do to make people aware of PID's the better. Becki, We see a dermatologist who has been freezing her moluscum and warts. A few had to be frozen a couple of times. The warts are the longest in going away. We are finally down to one area on her foot. She is taking extra B12 under the tongue. We just keep watching for new ones, and have them frozen (or burned however you look at it) as soon as we notice them. For us, it seems the faster you have them done, the better the results. The only warts that haven't gone away are the original ones. We have been dealing with this for a year or more. We also keep the skin moisturizer, Cetaphil cream on the skin. The dermatologist is very adamant about keeping the moisturizer on to help prevent the cracks in the skin where " things " can get in easily. Cetaphil doesn't have any of the irritants like Lanolin in it. I can use it to help keep my eczema under control. Some fo the other loitions actually give me breakouts of eczema. I am taking Tagamet for viral issues. I have chronic mono and have started the Tagamet routine. It has really helped. My glands aren't swollen all the time now. I would think that it would help with other viruses too. Good luck with this. I hate it for the kids. It hurts having the warts done. L Mom to Ashton 12 CVID, Asthma, Dyslexia & Marina 9 Asthma Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2006 Report Share Posted January 9, 2006 In a message dated 1/8/2006 12:37:26 PM Central Standard Time, rionfam@... writes: > We also have a really good grip on her eczema (went to National Jewish & > learned the " wet wrap " trick) Becki: What is that, please? (mom to , age 6-1/2, dairy intolerant-related GERD -- currently has polysaccharide antibody def, previously had transient IgG, IgA, t-cell & other defs... and also to Kate, age 3!, more dairy intolerant but very healthy!) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2006 Report Share Posted January 9, 2006 , It is a " treatment plan " where you bathe the child for 20 minutes keeping them completely wet by wringing out towels or pouring warm water on their upper body/head the whole time. Then when they get out you barely pat them off & immediately apply steroid ointment very liberally. Then you get a pair of 100% cotton p.j.s and get them wet in warm water, wring them out and put them on the child. You even can put wet socks on the hands & feet if needed. You then put a dry pair of warm ups & dry socks over the wet ones. Depending on the severity of the eczema you can do this in the morning & night or only at night if not too bad. You preferably leave the wet wraps on 2 hours in the morning and all night at night. I usually do her baths real early so we can leave them on longer than 2 hours, but take them off right before bed time so she can sleep in dry p.j.s (she has slept in them though when severe enough). I have the whole regiment in my computer & can print it & send it too you if you want. There is a lot of good info. in it and I have added a few things I have learned along the way that have been very helpful. One thing I was never told by another dr. was that you are not supposed to use your fingers when getting ointment out of the tub or tube. N.J. told me to use a tongue depressor...and don't " double dip " . This keeps you from contaminating the ointment with bacteria that can be on your hands or their skin. Let me know...I'd be happy to pass the info. along...it has made a world of difference in Reagon's skin. As a matter of fact, we saw a dr. today that we haven't seen in awhile and she asked if I minded if she pulled up Reagon's shirt to look at her skin...she was in awe of how good it looked based on what it used to look like! Becki Re: Digest Number 2705 In a message dated 1/8/2006 12:37:26 PM Central Standard Time, rionfam@... writes: > We also have a really good grip on her eczema (went to National Jewish & > learned the " wet wrap " trick) Becki: What is that, please? (mom to , age 6-1/2, dairy intolerant-related GERD -- currently has polysaccharide antibody def, previously had transient IgG, IgA, t-cell & other defs... and also to Kate, age 3!, more dairy intolerant but very healthy!) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2006 Report Share Posted January 9, 2006 , It is a " treatment plan " where you bathe the child for 20 minutes keeping them completely wet by wringing out towels or pouring warm water on their upper body/head the whole time. Then when they get out you barely pat them off & immediately apply steroid ointment very liberally. Then you get a pair of 100% cotton p.j.s and get them wet in warm water, wring them out and put them on the child. You even can put wet socks on the hands & feet if needed. You then put a dry pair of warm ups & dry socks over the wet ones. Depending on the severity of the eczema you can do this in the morning & night or only at night if not too bad. You preferably leave the wet wraps on 2 hours in the morning and all night at night. I usually do her baths real early so we can leave them on longer than 2 hours, but take them off right before bed time so she can sleep in dry p.j.s (she has slept in them though when severe enough). I have the whole regiment in my computer & can print it & send it too you if you want. There is a lot of good info. in it and I have added a few things I have learned along the way that have been very helpful. One thing I was never told by another dr. was that you are not supposed to use your fingers when getting ointment out of the tub or tube. N.J. told me to use a tongue depressor...and don't " double dip " . This keeps you from contaminating the ointment with bacteria that can be on your hands or their skin. Let me know...I'd be happy to pass the info. along...it has made a world of difference in Reagon's skin. As a matter of fact, we saw a dr. today that we haven't seen in awhile and she asked if I minded if she pulled up Reagon's shirt to look at her skin...she was in awe of how good it looked based on what it used to look like! Becki Re: Digest Number 2705 In a message dated 1/8/2006 12:37:26 PM Central Standard Time, rionfam@... writes: > We also have a really good grip on her eczema (went to National Jewish & > learned the " wet wrap " trick) Becki: What is that, please? (mom to , age 6-1/2, dairy intolerant-related GERD -- currently has polysaccharide antibody def, previously had transient IgG, IgA, t-cell & other defs... and also to Kate, age 3!, more dairy intolerant but very healthy!) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2006 Report Share Posted January 9, 2006 Becki, Can you e-mail me at screising@... the eczema info abut " wet wraps " . I have never heard of that before and would like to try it on my boys. What kind of ointment do you use? Do you use OTC like Auquaphor or perscription ointments like Des Owen, Elidel, Locoid etc. Thanks! Sincerely, Mom to , 3, CVID, asthma, eczema, chronic sinus infections, peanut allergy, environmental allergies , 4, healthy , 7, asthma, eczema, environ. allergies Re: Digest Number 2705 In a message dated 1/8/2006 12:37:26 PM Central Standard Time, rionfam@... writes: > We also have a really good grip on her eczema (went to National Jewish & > learned the " wet wrap " trick) Becki: What is that, please? (mom to , age 6-1/2, dairy intolerant-related GERD -- currently has polysaccharide antibody def, previously had transient IgG, IgA, t-cell & other defs... and also to Kate, age 3!, more dairy intolerant but very healthy!) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2006 Report Share Posted January 11, 2006 In a message dated 1/9/2006 6:34:34 PM Central Standard Time, rionfam@... writes: > Then you get a pair of 100% cotton p.j.s and get them wet in warm water, > wring them out and put them on the child. You even can put wet socks on the > hands & feet if needed. You then put a dry pair of warm ups & dry socks over > the wet ones. Doesn't the wet soak through? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2006 Report Share Posted January 11, 2006 Becki: That's okay, you can't send attachments to any board. The place she (Kate, my non-PID) starts with on the eczema is her fanny, so just the undie part will do for now... once it gets ahold and we keep " cheating " with the dairy, that's when it spreads elsewhere. I'm not sure she's going to go for damp clothing in any case -- the eczema doesn't bother her, amazingly, so it will be a hard sell to put up with wet clothes. ??? (mom to , age 6-1/2, dairy intolerant-related GERD -- currently has polysaccharide antibody def, previously had transient IgG, IgA, t-cell & other defs... and also to Kate, age 3!, more dairy intolerant but very healthy!) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2006 Report Share Posted January 11, 2006 Amazingly..not too bad. Wring them out real good and get a good thick pair of sweats. I tried to email that attachment to the PED website, but it didn't work! It went through, but I noticed it won't open?? I tried to do it on my own (first problem), I'll get my husband to retry in the morning. Sorry! Becki Re: Digest Number 2705 In a message dated 1/9/2006 6:34:34 PM Central Standard Time, rionfam@... writes: > Then you get a pair of 100% cotton p.j.s and get them wet in warm water, > wring them out and put them on the child. You even can put wet socks on the > hands & feet if needed. You then put a dry pair of warm ups & dry socks over > the wet ones. Doesn't the wet soak through? Quote Link to comment Share on other sites More sharing options...
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