Guest guest Posted May 11, 1999 Report Share Posted May 11, 1999 Dear Dale, I hope is doing better, my daughter was hospitalized with chickenpox in 1995 and had to learn to walk and talk again it hit her cerebellar area of the brain. Keep up the good work and keep the fluids going. annette mom of alissa cvid asthma >From: Autti@... >Reply-To: PedPIDonelist >To: PedPIDonelist >Subject: Re: Hi from Dale >Date: Tue, 11 May 1999 08:38:51 EDT > >From: Autti@... > >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 > >------------------------------------------------------------------------ >ONElist: the best source for group communications. >http://www.onelist.com >Join a new list today! >------------------------------------------------------------------------ >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. _______________________________________________________________ Get Free Email and Do More On The Web. Visit http://www.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 1999 Report Share Posted May 11, 1999 Dear Savvymom6@..., My daughter contracted chickenpox from the vaccine. To shorten the live of chickenpox we were told by our immunologist that varicella zoster IVIG was to be given. With the way my daughter's immune system is we never know how she will respond to a vaccine. She has no immunity to pneumonia of any kind and does not titer to pneumovax so it is like shooting water. I think every child is different and really research information before giving varivax. Good Luck. annette monm of cvid asthmatic >From: Savvymom6@... >Reply-To: PedPIDonelist >To: PedPIDonelist >Subject: Re: Hi from Dale >Date: Tue, 11 May 1999 10:11:34 EDT > >From: Savvymom6@... > >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 > >------------------------------------------------------------------------ >ONElist members are using Shared Files in great ways! >http://www.onelist.com >Are you? If not, see our homepage for details. >------------------------------------------------------------------------ >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. > _______________________________________________________________ Get Free Email and Do More On The Web. Visit http://www.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 7, 1999 Report Share Posted July 7, 1999 Dear Dale: Glad to hear Katy is doing better. IT sounds like you have your hands full with the theater. I hope is doing better. We hope that we see the same change in our daughter this year we now have been on IVIG six months. We keep hoping. Take care and hope you all stay well. God Bless, annette mom to alissa cvid,asthmatic >From: DaleMWeath@... >Reply-To: PedPIDonelist >To: PedPIDonelist >Subject: Hi from Dale >Date: Tue, 6 Jul 1999 14:07:39 EDT > >From: DaleMWeath@... > >from Dale, Mom to Katy, 15, CVID > >Greetings to all. Glad to hear from you Helen. We're continuing to pray. >I >know it's hard to wait. What a great team to have rooting for you! It >always helps to have a doctor in the family! Hopefully, Becky, you'll >get >reports today -- good or bad, it feels better to know than to wait! At >least we know what we're fighting! > >Katy's doing great. She's SOOOO much better after 1 year on IVIG. Last >year >this time we were about to lose hope. This year -- she's driving us crazy >-- >can you take me here, can I go there, do I HAVE to come home at midnight? >We're loving it. Mom's hang in there. Katy went down, down, down for 4 >years. Now, we're finally seeing the beautiful woman that's been buried >underneath all this medical junk. > > W. Best wishes on your move today. Hope all goes well. Once you >get settled, let me know and we will get together. We're coming up on >Charlie and the Chocolate Factory performances (the last two weekend of >July), so I'm getting busier. I'll be backstage manager and there will be >rehearsals every night that last week. Maybe you'd like to come and see >it! > My number is 969-0318. > > (my 16 year old)'s head cold turned nasty, so he's on antibiotics. >I'm trying to keep Katy away from him. But it's impossible! I'm very >curious to see if we can make it through this without Katy getting sick -- >that will be a real sign of improvement! > >IVIG is Thursday. We're in to a nice routine -- hope it stays that way! > >Gotta get my day started. >In His service, >Dal > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 1999 Report Share Posted July 30, 1999 Dale, No problem about the mall get-together. I just hope Katy is in tip-top condition for the performances this weekend and her week at camp!! As it turned out, I ran some errands I desperately needed to run, and caught up on some studying I needed to do before school starts again. I thought about trying to walk around myself today, but ended up walking ALL OVER San Francisco, so I'd had my exercise for the day and was beat by the time I came home. But I'd offered to make dinner for (my) tonight, as he's been very stressed at work, so I just sat down about half and hour ago (11PM). Phew! CONGRATS to Katy on the successful audition! What an excellent opportunity... and with an understanding director, no less. I can't wait to hear the details as they happen! Good luck with your crazy week... I'll be around for about another week, so if you have any desire to get together for a little while when Katy's at camp, just let me know... Take care! PS: A while back, you wrote a great email about foods and cooking for people who are lactose intolerant. I saved it, and I was wondering if you'd mind if I put it on my (soon-to-be) website? I'm trying to get some food info together for people with dietary restrictions. Of course I'd give the proper credit :-) . Just let me know what you think... Thanks! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 1999 Report Share Posted August 16, 1999 Dear Dale, I hope you and are feeling better today from the stomach flu! Drink lots of fluids and try and rest have a good week! regards, annette and alissa cvid,asthmatic,ataxia >From: DaleMWeath@... >Reply-To: PedPIDonelist >To: PedPIDonelist >Subject: Hi from Dale >Date: Mon, 16 Aug 1999 00:31:11 EDT > >From: DaleMWeath@... > >from Dale, Mom to Katy, age 15, CVID > >Matt: yes, I have an acquaintance who took IVIG from age 11 (diagnosed as >CVID) who had trouble getting IVIG when she started college, so went off >and >after two years her levels are still good. Her Mom states that she still >tires easily and when she gets a cold, she seems to stay down a little >longer >than usual, but for the most part is living a normal college life -- taking >a >full load. Hope is out there!!!!! > >: Great news! Let's get these IVIG's settled down finally. > >Has anyone heard from Sandy and Adam? How did that first infusion go? > >I attended my first IDF meeting on Saturday. It was a very small group, >but >was interesting. Bonnie Doak says hi to Gail ! I shared the >PedPID >webpage address with some new people, so we may get some new responses. > >Katy and I both are down with a stomach flu -- hers on Thursday and Friday >and mine on Saturday night and Sunday. Hope it's gone tomorrow. It's the >pits! > >Gotta get some sleep. > >In His service, >Dale > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 1999 Report Share Posted August 25, 1999 Dale, You mentioned having a tough time finding Gammimmune 10%. Did they tell you why there is a hold up? Cassie is due for her next infusion next week and I have scheduled a sub to come in for my class. If they are having trouble finding the medicine, maybe I should try to call ahead? Have a great time in Florida. We are scheduled for the Millennium Celebration in December. And, we cannot wait. Belinda Rose, mom to Cassie, igg immunodefficient, asthma, chronic sinusitis Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 1999 Report Share Posted August 25, 1999 Dale - good luck with the applications. Does have any thoughts as to what career he wants to pursue? Sorry to hear 's not up to par, hope it resolves soon. Macey has taken the last two doses of the Ceftin straight from the syringe. Through some hard ball words and promises of sips of Coke (a no-no on her cholesterol diet) it seems to work. Sandy unsubscribed from the list yesterday. I think from now on that if someone unsubscribes that I will forward the automated request that Onelist generates to my email account. Unless they write a goodbye to the group noone will ever know. Ursula Holleman Macey's mom (4 yr. old with CVID, asthma, GERD, sinus disease, grade I left kidney reflux, Sensory Integration Disorder, Diabetes Insipidus) ICQ # 28592349 http://www.icq.com PedPID email list archives http://www.netpage.org/PedPID/_PedPID/ PedPID email list introductions http://www.netpage.org/PedPID/_PedPID/introduction.htm Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 1999 Report Share Posted August 26, 1999 from Dale, Mom to Katy, CVID , age 15 Autumn, the other thing I hate to hear is " I don't think I could parent a child like that. " No one asked me if I wanted to parent the hard way! But I'm trusting that God will give you the strength to provide everything that can be provided for these boys. And right now that seems to be a lot of physical labor mixed with a lot of love. Try to throw in some giggles now and then. To all: God bless you and strengthen you for the tasks ahead. Sometimes all we can do is cry, " Abba, (Daddy) Father, hold me up! " And He does! Ursula, I agree with whoever suggested that you take care of Macey's needs yourself rather than trusting the school. That may mean a trip to the school twice a day to check levels -- but that may be what it takes to get her safely through a year. You will know what has to be done and somehow, you'll find the right words and the right procedure. Doctors practice medicine -- we practice child rearing! God bless you as you figure this new challenge out. In His service, Dale Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 1999 Report Share Posted August 26, 1999 Dear Dale... Thank you so much...you know how to add a smile to my face on any given day. Autumn Quote Link to comment Share on other sites More sharing options...
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