Guest guest Posted May 11, 1999 Report Share Posted May 11, 1999 Dear Dale, is just about over the chicken pox but late Saturday night went into significant angioedema of the throat. We managed it with medication, but he was almost re-admitted yesterday. We are hoping that this will resolve quickly, although that is usually not the case with . is so steroid dependent that his little body has a difficult time being off of them. He can not go back on them for a couple more weeks. You would not believe what they are giving him in the meantime....HUGE amounts of anti-histamines and lots of nebulizer treatments etc. Thanks for thinking of us. Hope you are well. Autumn mom to Mark Cd5-Cd19 PID/ Samter's syndrome, A1A, GERD Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 1999 Report Share Posted May 11, 1999 Hi Everyone! Can someone please explain what happens with " our " kids when they get chicken pox. I know that Savannah's Dr. had said a few years ago that it was probably best for her not to get the vaccination. At the time is was new and just being offered. She had not been diagnosed with PID yet. However, after reading several of the letters regarding chicken pox, I am a little nervous. She was recently exposed to them, but has not come down with them yet. Any info would be great. Thanks to Everybody. Sandy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 1999 Report Share Posted September 19, 1999 from Dale, Mom to Katy, CVID, age 15 To all: Sorry I've been out of touch. This has been the greatest summer yet for us. Katy has been mostly well instead of mostly sick. I think that's something we didn't expect after going through those very tough years of diagnosis. But after 1 year on IVIG, we're actually seeing normal teenage stuff! She's been so active this summer -- there's been the usual skin rashes, stomach upsets, watching diets, conserving energy, but staying mostly well. I feel that I should SHOUT that as loud as I can for those of you who are new to this site. There are some very seriously ill children involved in this site -- but there are also kids who are fighting very hard to live normal active lives. We know that just around the corner is another crisis, but these are GREAT DAYS! Hi to Lee. I didn't know we had another Californian in the group. I'm in Mountain View. Where do you go for medical care? Welcome back to Sandy. I hope Adam is improving. It may take a while before you see results -- it took Katy the full year! Autumn, and Mark are still in our prayers. Best wishes for a good week. Are they able to do school? Gotta get lunch on the table! Best wishes to all! In His service, Dale Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 1999 Report Share Posted September 19, 1999 Dear Dale, Hi! It's great to hear from you. We live in Merced, CA. Our primary care physician is here in Merced also. My son's immunologist is at Stanford. only sees him once a year though. Our primary care takes care of the IVIG's and other problems. We have been to many doctors in and around the surrounding area, ex. Fresno, UCSF and Modesto. We have also been to New York City. My son saw an immunologist there, but she didn't really have any new news for us. The rashes that you mentioned in your e-mail caught my eye. My son has had rashes since birth. What do you do about them? Do they ever go away? The only time my son's disappeared completely was when he was on steroids for a number of years due to nephrotic syndrome. Hope to hear from you soon. Lee Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 22, 1999 Report Share Posted September 22, 1999 Dale, that is wonderful about Katy's part in the play. She must be so talented to land all those roles. It sounds like she is going to have quite a year! Best of luck. annette and alissa >From: DaleMWeath@... >Reply-To: PedPIDonelist >To: PedPIDonelist >Subject: Hi from Dale >Date: Tue, 21 Sep 1999 13:38:07 EDT > >From: DaleMWeath@... > >from Dale, Mom to Katy, age 15, CVID > >Lee, Katy always has a rash somewhere, but it's different from day to day. >Sometimes they itch, sometimes not. Sometimes they cover her back torso >and >look like pimples. Sometimes the front. Each bump has a white center that >only lasts one day. The next day it will look dried and by the next it is >totally gone. But there's always a new " batch " . She also has swelling in >her hands and feet that make them look mottled and blotchy. She also has >what I have termed " inflammation of nerve endings " in her hands. It >happens >about 1 or twice a week and never when we can show a doctor. It's usually >just one to 5 spots, but hurts like the dickens. One time she had over 40 >of >them on both hands and they lasted for a full week. Unfortunately, we >couldn't get in to see her doctor, and when we did, there was only the >swelling, blotchy stuff. I've got permission now to call the dermatologist >directly if that ever happens again. She has very sensitive skin to soaps, >textures, etc. Right now she's dealing with problems around her toe >nails. > Because we home school, we never wear shoes. So, when she wears shoes >the >skin around her toe nails gets inflammed. Disney land really taxed the >toes. We're soaking every night and trying to get it under control before >she starts theatre tonight! Hope that doesn't further irritate, but know >that it will. Jazz shoes are notoriously tight fitting and hard on toe >nails. > >Yes, Katy is doing theatre this fall. She landed a role in the School >House >Rock touring troupe. They will be performing at least once a month in >local >schools. Katy is SOOO excited. Then she will continue with Stories on >Stage - a troupe that presents books to school children -- but they perform >at the Center for Performing arts and perform the same book four times each >month, then starts on a different book! She really enjoys that. No major >productions this fall! YEAH! > >Gotta get my day started. > >In His service, >Dale > >>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 September 27, 1999 Report Share Posted September 27, 1999 Dear DAle: IT is IVIG WEEK for us also. HOpe yours goes well. It will be a long one for us since we are having done at the hospital again and not at home. Have a good week and will keep a prayer that they will have the right IVIG FOr you !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!1 annette and alissa >From: DaleMWeath@... >Reply-To: PedPIDonelist >To: PedPIDonelist >Subject: Hi from Dale >Date: Mon, 27 Sep 1999 17:47:55 EDT > >From: DaleMWeath@... > >from Dale, mom to Katy, 15, CVID > >Autumn, > >I'm so glad you get this opportunity to work on this! Give us an update on >the boys. The last I heard, Mark was covered in bruises, you were trying >immune suppression and you felt it might be working. What's going on? >How's >'s breathing? > >Another thought along the line of getting the word out: We might be able >to >kill two birds with one stone by recruiting clean blood donors if anyone >could ever figure out how that works. I know my church would be very >glad >to participate and in an indirect way teach them about Immune Deficiencies. > But maybe they don't need donors -- I don't know. It just seems that it >might cut costs somehow. Just an idea. > >Wishing all a great day! This is blood work and IVIG week. I'm trying to >resist the urge to call the pharmacy to check and see if they really are >going to supply it this time. Trust, trust, trust. Hope! Hope! > >In His service, >Dale > >>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 September 28, 1999 Report Share Posted September 28, 1999 Dale, I've become somewhat of a pessimist about trust when it comes to my child's health. I feel like we're that only ones that truely have vested interest. SO.....I would call. what would it hurt? You'll only kick yourself if infusion day comes & they don't have the product. Good Luck, Quote Link to comment Share on other sites More sharing options...
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