Guest guest Posted May 18, 1999 Report Share Posted May 18, 1999 Dale: Alissa is on gammaguard and still having all the above . I hope it is chalked up to be that it is because she has not gotten used to the infusions. God Bless tomorrow is off to the doctor I think she has strep again. annette mom cvid asthmatic >From: DaleMWeath@... >Reply-To: PedPIDonelist >To: PedPIDonelist >Subject: Hi from Dale >Date: Tue, 18 May 1999 21:25:56 EDT > >From: DaleMWeath@... > >from Dale, mom to Katy, CVID, age 14 > >We put up with Katy's 48 hour post IVIG headache for 3 infusions. They >always started 48 hours post IVIG and lasted approximately 24 hours and >then >disappeared totally. The headache was excruciating, included not being >able to focus her eyes, and acute reactions to sound, light and movement. >Our nurse (bless her) suggested a change of IVIG from Venoglobulin to >Gammimune. She has not experienced the headache since! Katy's was >never >diagnosed as asceptic meningitis, the immunologist just said that for some >people there is an increase in neural fluid that causes a neurological >headache. I call it asceptic meningitis. She still has a couple of >days >of " blah " we call it IVIG flu, but no headache! > >Hope you get it figured out. > >In His service, >Dale > >------------------------------------------------------------------------ >It's finally here! What's your opinion? >http://www.onelist.com >Create a Star Wars discussion group at ONElist. >------------------------------------------------------------------------ >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 June 12, 1999 Report Share Posted June 12, 1999 Dear Dale: Good luck with Katy's play I hope you find time to rest in between everything. best regards annette mom to alissa cvid,asthmatic >From: DaleMWeath@... >Reply-To: PedPIDonelist >To: PedPIDonelist >Subject: hi from Dale >Date: Wed, 9 Jun 1999 23:17:45 EDT > >From: DaleMWeath@... > >from Dale, Mom to Katy, age 15, CVID > >To and : Best wishes for tomorrow. We'll pray for >while Katy has her IVIG tomorrow, too! Katy hasn't had the headache >since >we changed brands, but we don't want to ever go back there! They were >terrible. > >To Ursula and Macey: I'm sorry Macey's down again. Hang in there. We use >a >lot of guafenesin (Humabid). It's the basic ingredient of Robitussin >without >the fillers. It helps thin things out and sometimes prevents trouble. > >To all: Katy is doing so well in spite of all the chronic stuff. She just >landed her first lead in a major production. She will be Mrs. Beauregarde >in >Charlie and the Chocolate Factory. I'm breathing easier though since >there >are two separate casts and she has a double in the other cast that could be >called on if necessary. (The things a mother can think of to worry >about!!!). The best part is that she rehearses 3 nights a week for the >next >6 weeks and I've got some free time!!!!! YEAH!!!! >I survived the banquet dress, now I get to start on costumes! The price of >freedom! > >Best wishes to all. We've got IVIG tomorrow - hopefully - the dextrose >arrived at 6 tonight, but the nurse still hasn't called to confirm. It's >about time to call her before I panic. She's very dependable (so far!). > >Have a great day and God bless you as you minister to your little ones, >In His service, >Dale > > >------------------------------------------------------------------------ >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 September 15, 1999 Report Share Posted September 15, 1999 Dale: Glad you are all right. Glad you made it home allright! Hope you can return later to enjoy Disney World. I think we just timed it right! annette and alissa >From: DaleMWeath@... >Reply-To: PedPIDonelist >To: PedPIDonelist >Subject: Hi from Dale >Date: Tue, 14 Sep 1999 23:02:32 EDT > >From: DaleMWeath@... > >from Dale, Mom to Katy, 15, CVID > >We're home -- thanks to Floyd's interruption of our trip to Florida. I >can't >begin to tell you guys how much Katy has improved on IVIG. A year ago, >spending a week at Disney World would just not have been possible. We've >had a fabulous break. We're all exhausted as we have not been to sleep >since >Sunday night. We spent the weekend with friends in Melbourne and ended up >being required to evacuate on Monday. But, the Lord brought us safely home >even though we're exhausted. I'll write more later. Katy did the whole >week and other than sleeping late everyday -- kept us running to do >more-more-more!!!! It was so great! > >I've got to get some sleep -- later.... > >Dale > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 10, 1999 Report Share Posted November 10, 1999 from Dale, Mom to Katy, CVID, age 15 Lee, thanks for the description. I'm really sorry -- that sounds painful. I guess Katy's is something else because she just gets blotchy looking in the hands and feet. Thanks for helping me see the difference. It's so hard to visualize some of this stuff! I hope you get some help soon. God bless, Autumn, we're praying all day today. Hang in there! In His service, Dale Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 10, 1999 Report Share Posted November 10, 1999 Dear Lee and Dale: I hope both of your kids are feeling better! I am glad we have not had to deal with such things so far. I hope you all have a wonderful weekend. Happy Vetrans day, Autumn: We are with you this day and will continue prayer, God bless, annette and alissa >From: DaleMWeath@... >Reply-To: PedPIDonelist >To: PedPIDonelist >Subject: Re: Hi from Dale >Date: Wed, 10 Nov 1999 20:32:24 EST > >from Dale, Mom to Katy, CVID, age 15 > >Lee, thanks for the description. I'm really sorry -- that sounds painful. >I >guess Katy's is something else because she just gets blotchy looking in the >hands and feet. Thanks for helping me see the difference. It's so hard to >visualize some of this stuff! I hope you get some help soon. God bless, > >Autumn, we're praying all day today. Hang in there! > >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. ><< text3.html >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 1999 Report Share Posted November 11, 1999 Dear Annette, Thanks for thinking about us and the prayers. It really does help. Take care. Lee Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 25, 1999 Report Share Posted November 25, 1999 HAPPY THANKSGIVING TO ALL!!!! Belinda mom to Allyssa (7 yrs.) and Cassie (5 yrs.), igg immunodefficient, asthma, chronic sinusitis Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 6, 1999 Report Share Posted December 6, 1999 from Dale, Mom to Katy, CVID, age 15 Capri -- I'm so glad he's rebounding! Now it will be time for your grief! Watch out! The pendulum gets us later! Taking meds -- how great that he's already mastered pills. That eliminates some of the nasty liquid stuff. We use gelatin capsules for prednisone. (I buy them at GNC). If you can't find empty capsules, buy them with the gelatin powder in them -- open them, empty them and put the pills inside. The capsule dissolves as it goes down the esophagus and lets the pill do its thing! No taste! I personally wouldn't want yogurt with my bitter stuff -- but that may be personal preference. Also, you don't want him to hate yogurt. I find that saltine crackers or corn chips absorb bitter faster and the saltiness makes it less naseating. Ursula, best wishes for you and your little ones as you have a really hectic month. We're praying the surgery for both of you will bring quick healing and no complications. Welcome home . Hope you both are recuperating from jet lag and vacation-itis! It's hard to find the routine again! Gotta get this body to bed. Katy may be feeling a little better. Notices came out today for Bye Bye Birdie auditions -- and all of a sudden she's feeling perky! Go figure! In His service, Dale 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.