Guest guest Posted November 2, 2002 Report Share Posted November 2, 2002 Ursula: Remember awhile back, had a horrible rash from her pullups that took over a month and topical steroids to kick. I discovered that a lot of kids get rashes from Pull Ups. I switched brands and found that " Easy Ups " do NOT give her that rash. I forget the parent company but Easy Ups have Sesame Street characters on them. Give them a try! (mom to Kate, born 9/19/02; and , age 3-3/4 -- currently has polysaccharide antibody def, previously had transient IgG, IgA, t-cell & other defs) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 2, 2002 Report Share Posted November 2, 2002 I didn't think of that -- should have known since 's about outgrown the biggest size of easy ups herself. I'm glad you told me about the Overnights, I was afraid we were going to end up in Depends! She is not any where near close to being trained at night, she's got about 14 pounds of urine in that easy up in the morning. I don't know what to do about naps, she was staying dry during afternoon naps but lately has been having an accident every single day, yet she's very resistant to using easy ups at nap time. (mom to Kate, born 9/19/02; and , age 3-3/4 -- currently has polysaccharide antibody def, previously had transient IgG, IgA, t-cell & other defs) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 2, 2002 Report Share Posted November 2, 2002 Macey is too big for the regular pull-ups but we are using a brand called " Good Nights " which are made for children up to 85 lbs. It's more like an overnight pad than training pants. So far so good. Ursula Holleman Macey's mom (7 yr. old with CVID, asthma, sinus disease, GERD, Diabetes Insipidus, colonic inertia) http://members.cox.net/maceyh Immune Deficiency Foundation - Peer Contact for GA http://www.primaryimmune.org / Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2003 Report Share Posted January 24, 2003 I know that I'm in denial about the bracelet thing! I keep putting off buying one! Pam wife to (16 years) mother to , 9, Hannah, 6, Rebekah, 3, and Leah, 1 Ursula Hi Ursula, I have done the exact same thing with Mark and 's medic alert bracelets. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2003 Report Share Posted April 27, 2003 - We have a 36 bed Level 3 and a 14 bed Level 2. We pretty much have a dedicated Level 2 staff so I've been assigned to Level 3 most of the time. I've been there for 18 months as an extern (similar to an MD intern but for a nurse). We have 18 beds dedicated to vents and acute and 18 " grower and feeder " beds. We do everything but ECMO and recently lost our surgeon so we transport for some surgeries now. I'll do a 17 week residency within the Children's Hospital first (PICU, peds floor, NICU and Peds ER) and then go into the NICU for full time nights. There is a 2 yr wait list for day slots. I hope to work alot of night, weekend shifts. Thank for the congratulations. Ursula Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2003 Report Share Posted May 5, 2003 Kody had cherry flavored. But it was still nasty. They also kept it very cold for him. And instead of giving it to him in a cup to drink they used a huge syringe and squirted it in his mouth. Diane Check out Special Needs Awesome Kids at www.geocities.com/schmidtzoo/SNAK.index Ursula > They have always tried putting either chocolate or strawberry flavoring in the barium when Kaitlyn has had to have this done. It is still kinda nasty, but she will drink it and not be so complaining about it. Hope this helps. Xan > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2003 Report Share Posted May 16, 2003 - Dr. Kobrynski or Dr. at Emory Children's Clinic @ Egleston call 1-800-727-1499 and ask for their office by name or ask for immunology. Their nurse is wonderful. Good luck with the ultrasound. Ursula Holleman mom to (10 yrs old) and Macey (8 yr. old with CVID, Diabetes Insipidus, colonic inertia) http://members.cox.net/maceyh Immune Deficiency Foundation's 2003 National Conference http://www.execinc.com/idf/ Immune Deficiency Foundation - Peer Contact for GA http://www.primaryimmune.org / Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2003 Report Share Posted May 19, 2003 We took her to the ped today because she was still having light sensitivity and pain. She changed her from Tylenol/Codeine #3 to Darvocet N50. She's in bed right now so hopefully something will work soon. After this we'll consider adding Imitrex if the Darvocet doesn't work or in conjunction with it. Ursula Holleman mom to (10 yrs old) and Macey (8 yr. old with CVID, Diabetes Insipidus, colonic inertia) http://members.cox.net/maceyh Immune Deficiency Foundation's 2003 National Conference http://www.execinc.com/idf/ Immune Deficiency Foundation - Peer Contact for GA http://www.primaryimmune.org / Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2003 Report Share Posted May 19, 2003 Ursula,Sorry to hear Macey is doing so poorly. is also spending alot of time laying down with a headache. Im waiting for day 5 of the antibotics to kick in before we call.We will say a prayer for Macey tonightle Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2003 Report Share Posted May 19, 2003 Ursula, Hoping for a quick recovery. Give her a Texas hug from her tonight. Belinda Rose, Mom to Allyssa and Cassie (8), igg immunodeficient, asthma, sinusitis, IVIG for 6 years, heart condition Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2003 Report Share Posted May 21, 2003 In a message dated 5/19/03 3:18:20 PM Pacific Daylight Time, uahollem1@... writes: > After this we'll > consider adding Imitrex if the Darvocet doesn't work or in conjunction with > it. Hi Ursula, Have you tried the kid Vicodan? It seems to work very well for the few times needs it for head pain. It's half strength adult Vicodan. Sandi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2003 Report Share Posted May 21, 2003 In a message dated 5/19/03 3:18:20 PM Pacific Daylight Time, uahollem1@... writes: > After this we'll > consider adding Imitrex if the Darvocet doesn't work or in conjunction with > it. Hi Ursula, Have you tried the kid Vicodan? It seems to work very well for the few times needs it for head pain. It's half strength adult Vicodan. Sandi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2003 Report Share Posted May 21, 2003 Just thinking about Macey. How is she doing? Have the headaches calmed down? is better back in school. le Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2003 Report Share Posted May 21, 2003 Ursula ... thanks for the info. We made an appointment for mid-July (that was the earliest ... yikes!). I appreciate the name and number! Tweed Re: Ursula - Dr. Kobrynski or Dr. at Emory Children's Clinic @ Egleston call 1-800-727-1499 and ask for their office by name or ask for immunology. Their nurse is wonderful. Good luck with the ultrasound. Ursula Holleman mom to (10 yrs old) and Macey (8 yr. old with CVID, Diabetes Insipidus, colonic inertia) http://members.cox.net/maceyh Immune Deficiency Foundation's 2003 National Conference http://www.execinc.com/idf/ Immune Deficiency Foundation - Peer Contact for GA http://www.primaryimmune.org / Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2003 Report Share Posted May 31, 2003 : Have you considered giving cranberry juice? It's supposed to form sort of an acidic barrier so bacteria can't adhere to the lining of the bladder, and therefore help prevent UTIs. I have had recurrent UTIs before and they are soooo horrible. Just an idea... (mom to Kate, born 9/19/02, dairy intolerant; and , age 4, dairy intolerant -- currently has polysaccharide antibody def, previously had transient IgG, IgA, t-cell & other defs) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2003 Report Share Posted June 2, 2003 She's only had one UTI so far (and they weren't even positive about it, because the level of bacteria was so low). Our new pediatrician in Georgia thinks they are getting positive results from the urine test because of her adhesions. He says that every time she gives a urine sample, it isn't a clean one because it passes over the adhesions which don't get clean enough with a wipe. He wanted to use a catheter, but I didn't feel it was necessary (I didn't want her to go through the pain), so they gave her an ultrasound which was fine. When I thought she had a UTI I tried cranberry juice and she wouldn't drink it. Then I tried the cranberry grape and she drank a little. I should try it again. Have you considered giving cranberry juice? It's supposed to form sort of an acidic barrier so bacteria can't adhere to the lining of the bladder, and therefore help prevent UTIs. I have had recurrent UTIs before and they are soooo horrible. Just an idea... (mom to Kate, born 9/19/02, dairy intolerant; and , age 4, dairy intolerant -- currently has polysaccharide antibody def, previously had transient IgG, IgA, t-cell & other defs) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2003 Report Share Posted June 3, 2003 Yougert is also supposed to help UTI's, but I find that cranberry juice works best. You can also buy cranberry supplements in the vitamin section of the pharmacy. Diane Check out Special Needs Awesome Kids at www.geocities.com/schmidtzoo/SNAK.index Re: Ursula > She's only had one UTI so far (and they weren't even positive about it, because the level of bacteria was so low). Our new pediatrician in Georgia thinks they are getting positive results from the urine test because of her adhesions. He says that every time she gives a urine sample, it isn't a clean one because it passes over the adhesions which don't get clean enough with a wipe. He wanted to use a catheter, but I didn't feel it was necessary (I didn't want her to go through the pain), so they gave her an ultrasound which was fine. > > When I thought she had a UTI I tried cranberry juice and she wouldn't drink it. Then I tried the cranberry grape and she drank a little. I should try it again. > > > Have you considered giving cranberry juice? It's supposed to form sort > of an acidic barrier so bacteria can't adhere to the lining of the bladder, and > therefore help prevent UTIs. I have had recurrent UTIs before and they are > soooo horrible. Just an idea... > > (mom to Kate, born 9/19/02, dairy intolerant; and , age 4, dairy > intolerant -- currently has polysaccharide antibody def, previously had > transient IgG, IgA, t-cell & other defs) > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2003 Report Share Posted September 1, 2003 In a message dated 9/1/03 1:33:20 PM Pacific Daylight Time, uahollem1@... writes: > Sandi - so far I like everything about it. Ursula, I'm glad to hear you love working with the cardiac kids!! They are an amazing bunch. Sandi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2003 Report Share Posted September 1, 2003 Sandi - so far I like everything about it. I've mostly had open heart kids, and then one child who was being worked up for transplant. It's a very rigorous schedule with classes sponsored by the hospital too. I'm back there Tue,wed,thur of this week and then here for a few days. Thanks for asking. Ursula Holleman mom to (10 yrs old) and Macey (8 yr. old with CVID, Diabetes Insipidus, colonic inertia) http://members.cox.net/maceyh Immune Deficiency Foundation - Peer Contact for GA http://www.primaryimmune.org / Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2004 Report Share Posted January 24, 2004 Hi Ursula, I have done the exact same thing with Mark and 's medic alert bracelets. I think that sometimes we take unintentional " breaks " from having to deal with the reality of living with a child with a chronic illness....that somehow if we do not put the bracelet/necklace back on makes things a little more " normal " for a while (when in all reality, wearing the bracelet or necklace is normal for us)...and I can tell you that I have done this consciously and unconsciously. I think that it is OK as long as we are aware of it. I would put her necklace back on her though, you would feel awful if anything happened while it was off. just put his bracelet back on after a month long break...it will remain on now!!! I have often referred to dealing with this as a " journey " in life...one that is a constant learning experience, with good and bad lessons for all of us as a family. Thoughts are with you~ Always, Autumn, Mom to Mark Cd5-Cd19 PID and Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.