Guest guest Posted April 27, 2006 Report Share Posted April 27, 2006 My daughter(6) is always tired but not diagnosed with chronic fatigue syndrome. She sleeps about 13 hours a night....usually if she is in bed at 9, she is not up until 10 am. If we have a big day (going somewhere or playing outside) she will sleep even longer. not sure how she is going to survive kindergarten. ~~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2006 Report Share Posted April 27, 2006 Amy- That is so funny that you bring up the shiners....my daughters are almost always there...they get worse then better but they are almost always there. She looks like she never sleeps. ~~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2006 Report Share Posted April 27, 2006 In a message dated 4/27/2006 2:30:11 P.M. Eastern Daylight Time, amycaraballo@... writes: do all your PID kids have the black circles under their eyes? I've been told the are " allergic " shiners. But the thing is, kiddo is not very allergic to anything but Bee and Wasp venom and a very mild dust allergy. He's had rast studies and several skin prick and intradermals. Mine has dark circles. She has no allergies. She does have fatigue. Janet, mom to Brittany CVID age 15 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2006 Report Share Posted April 27, 2006 In a message dated 4/27/2006 1:30:15 P.M. Eastern Daylight Time, rsknp@... writes: have a 14 yr old daughter w CVID--lots of fatigue, gerd, stomach issues, migrane headaches, mouth ulcers etc........ Your daughter sounds a lot like mine except she hasn't any mouth ulcers. Janet, mom to Brittany CVID age 15 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2006 Report Share Posted April 27, 2006 laurie6240 wrote: > Hi has anyone's older childer (mine is 12) been diagnosed with fatigue > syndrom on top of PID > ????? > Laurie, I hope that's your name -- please sign your posts (I know I forget, too) so we know how to address you. Yes, Katy had extreme fatigue along with her PID. But we found that after 1 year of IVIG, she was able to get on with her life. She tires easily -- but a lot of that was conditioning. She had been so incapacitated during the 2 years of no diagnosis that she had a long way to go in rebuilding her stamina. During college she felt that she couldn't do as many late nights in a row as her peers, but it was a minor limitation. I was told that some, but not all, get chronic fatigue syndrome along with their CVID. However, I wonder how much of that is just pure CVID that needs treatment! Katy also could tell when her dosage was becoming too low. When she would gain weight and not increase the dosage -- she would experience fatigue again. When they raised the dose -- the fatigue would diminish. Definitely dosage related. So.... Hope that helps, In His service, dale Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2006 Report Share Posted April 27, 2006 -Very interesting? I know that kids with a PID tend to fatigue easily. " fatigued syndrome " can be a very ambiguous labeling of an otherwise unidentified reason for chronic fatigue. Funny thing is, that I really know of very few PID children myslef that do not have a tendency to have problems with fatigue. The reason for this, as explained by our immuno, is that so much of their energy goes to trying to maintain any semblence of a normal immune system, that they run out of energy elsewhere. Anyone else??? Terri Cerda, Mom and both daughters with CVID and on IVIG -- In , " laurie6240 " <l.desouto@...> wrote: > > Hi has anyone's older childer (mine is 12) been diagnosed with fatigue > syndrom on top of PID > ????? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2006 Report Share Posted April 27, 2006 This reminds me...do all your PID kids have the black circles under their eyes? I've been told the are " allergic " shiners. But the thing is, kiddo is not very allergic to anything but Bee and Wasp venom and a very mild dust allergy. He's had rast studies and several skin prick and intradermals. So I've always felt those " shiners' were not so much allergies as something else going on. And my kiddo is ALWAYS tired! Just curious. Thanks Amy C. cerdaclan wrote: > -Very interesting? I know that kids with a PID tend to fatigue > easily. " fatigued syndrome " can be a very ambiguous labeling of an > otherwise unidentified reason for chronic fatigue. Funny thing is, > that I really know of very few PID children myslef that do not have > a tendency to have problems with fatigue. The reason for this, as > explained by our immuno, is that so much of their energy goes to > trying to maintain any semblence of a normal immune system, that > they run out of energy elsewhere. > > Anyone else??? > > Terri Cerda, Mom and both daughters with CVID and on IVIG > > -- In , " laurie6240 " <l.desouto@...> wrote: > > > > Hi has anyone's older childer (mine is 12) been diagnosed with > fatigue > > syndrom on top of PID > > ????? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2006 Report Share Posted April 27, 2006 I am relieved if I can put it that way, that so many other PID kids have the same symptoms as my pid son. He gets fatigue that seems neverending, headache with ivig, has lots of stomach issues. I was worried he might be the only one... Pam Tim - cvid, age 16 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2006 Report Share Posted April 27, 2006 Laurie, does Breanna get IVIG? Just wondering, In His service, dale Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2006 Report Share Posted April 27, 2006 In a message dated 4/27/2006 9:27:55 AM Pacific Daylight Time, l.desouto@... writes: Hi has anyone's older childer (mine is 12) been diagnosed with fatigue syndrom on top of PID Do you mean chronic fatigue?? Sandi, Mom to --age 13--CVID Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2006 Report Share Posted April 27, 2006 In a message dated 4/27/2006 11:30:12 AM Pacific Daylight Time, amycaraballo@... writes: This reminds me...do all your PID kids have the black circles under their eyes? _____________________________________________________________________________ Amy C, My son gets these when he has a sinus infection. Has your son been seen by a Ped to rule out sinus infection? Sandi, Mom to --age 13--CVID Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2006 Report Share Posted April 28, 2006 > Amy C, > My son gets these when he has a sinus infection. Has your son been > seen by > a Ped to rule out sinus infection? > Sandi, Mom to --age 13--CVID Hi! thanks. As a matter of fact, he's had chronic sinus infections which is why I ended up pursuing PID. But sadly, he has these circles everyday, somedays they are worse than others. He's had them since about age 2. But maybe it is related to a sinus problem. No one has ever done a sinus CT on him. Thanks! Amy C. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 1, 2006 Report Share Posted May 1, 2006 I agree with Terri. My little guy is only 3, but complains CONSTANTLY of fatigue. His immuno agreed that his little body os working double time trying to fight the " germ battle " with " unarmed men " . It is heartbreaking (and yes, sometimes worrisome) to watch our pumpkins struggle to get through each day with extreme fatigue. Unfortunately it is part of the disease. -Rogena (Mom to 4 boys, including Cole -Partial IgA Def, GERD, possible Celiac) > > > > Hi has anyone's older childer (mine is 12) been diagnosed with > fatigue > > syndrom on top of PID > > ????? > > > Quote Link to comment Share on other sites More sharing options...
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