Guest guest Posted May 19, 1999 Report Share Posted May 19, 1999 Dear Sue: My daughter has very fragile skin and also bruises very much and anything with a scent on it makes break out into hives. The survey is comforting to know that we are all going through the same problems with our kids. You are not alone. take care and have a nice evening. Annette mom to cvid asthmatic >From: MEACH9960@... >Reply-To: PedPIDonelist >To: PedPIDonelist >Subject: Re: Weird Body Temps >Date: Wed, 19 May 1999 10:00:33 EDT > >From: MEACH9960@... > >Dear , > >I agree totally about the new survey. It is comforting and scary at the >same >time to realize that we all have the same kind of symptoms. One of my >favorite phrases from the Doc's is when we run into some new kind of side >affect or problem and they tell me " Oh yea that is a complication from the >disease " Well how about telling us before we run into the problem. > >I have one more comment on the headaches, fevers and nausea from the IVIG. >My son had very severe reactions to the IVIG. Someone mentioned >stiff >neck. Jake would run a high fever, severe headache, light sensitivity, and >his neck was so stiff, his head would hand over to the side. This went on >for several months. A couple of times I took him to the DR and we would >just >dose him with prednisone. When we went to the Immunologist and actually >showed him what Jake went through, he finally decided to take notice. I >was >told that Jake had swelling in the base of his neck from the IVIG. Another >reaction............ We took him off of the IVIG for the summer last year >to >give his body a rest. We restarted in August and have been slowly >increasing >the amount he receives. As of the last infusion, he is at about 425 mg per >kilo of weight. They also (boys) receive large doses of prednisone and >benadryl. We have eliminated almost all of the side >affects.........YEA!!!!!!!!!!!!!! > >I was really upset when we found out about the swelling, but as usual no >one >listened to the MOM............WHY DO THEY DO THAT? Makes me crazy > >Here's one more question for the survey. Does anyone else have really >fragile skin...I don't know how else to ask this. has eczema. >He also heals very very slowly. They did a bleeding time test on his arm >in >March and he is going to have scars from the pokes that they put into him. >He also scraped his knee outside over the weekend and then he fell on it >Sunday night. It popped wide open. It required 4 stitches. It didn't >even >bleed until he started stitching him up....REALLY WEIRD.......... > >Let me know, > >Sue W-----Mom to Jake (10) and (6) > >------------------------------------------------------------------------ >Are you hogging all the fun? >http://www.onelist.com >Friends tell friends about 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...
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