Guest guest Posted November 15, 1999 Report Share Posted November 15, 1999 , Don't feel silly, not all children on list are so severe. My Zachary just turned 7 last week. He's pretty a normally functioning kid. He has been severe in the past but thanks to IVIG he's pretty much a normal kid now. We homeschooled him for until last month & now he's doing well in school. There are lifestyle changes that we've made, but really nothing big. As for the flu shot....go with your gut....if there's ever been times when I regret anything, it's been whe I went against my gut. But you can have all the people in you household have the shot instead....that should help her. Also keep in mind , you should NEVER get innoculated when you're actively ill. Welcome to the list, and feel free to ask whatever it takes to educated youreself to help Lorin. Wife to Tom, Mom to 7 yr Zach, ???(don't know the specific type) PID, GERD, chronic sinusitis, IVIG Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 1999 Report Share Posted November 15, 1999 Dear : I am glad Lorin is feeling better, I feel that alissa catches everything that is respiratory that comes along. The IVIG treatment has been the magic potion at this point it has cut her infection rate quite a bit. It is the only thing that helps her body to utilize the antibiotics also. She gets headaches alot but I think it is do to her rhinosinusitis all the time. Take care and hope Lorin is on the mend. God Bless, annette and alissa > >Reply-To: PedPIDonelist >To: PedPIDonelist >Subject: RE: (no subject) >Date: Mon, 15 Nov 1999 11:08:35 -0500 > >Dear Annette: Lorin is feeling better today, only a slight headache and >stomach seemed more settled. I have wondered about the medications myself. > Late in the spring when it started warming up, she started spitting up >alot whenever she was outside. She lost most of her recess at school since >the teachers would send her inside after she did. She started trying to >hide when she felt queasy so the teachers wouldn't see her. She seems to >catch every stomach virus that goes around and keeps it 3 times as long. >Thank you so much for asking. I just feel like sometimes I am hitting my >head against a wall. >thanks again, > and Lorin > >At 07:00 AM 11/15/1999 -0700, you wrote: > > > > > >Dear : Hope your daughter is feeling better and the lab work >shows > >what is the problem going on. Could one of her medications be giving her >a > >stomachache or has she been on antibiotics for a long time >prophalactically? > > take care and I hope things are better for you, > >regards, > >annette and alissa > > > > > >> > >>Reply-To: PedPIDonelist > >>To: PedPIDonelist > >>Subject: RE: (no subject) > >>Date: Sun, 14 Nov 1999 16:53:04 -0500 > >> > >>I am new to the list, but have been keeping up the best I can the last >few > >>days. We have had an earlier diagnosis of my daughter having a low IgA > >>count. She has had 4 sets of tubes, tonsils and adnoids are already >gone, > >>she has ecezema, asthma, allergies and chronic sinus infections. Since > >>this spring we have also had problems with headaches and stomach >problems. > >>They told me friday to start giving pepcid ac to her when she goes to >bed. > >>The doctor also ordered a ct scan friday (second this year) and the > >>allergiest had 3 vials of blood drawn. I know I am no where near the > >>complications that most of you are, but can anyone offer any suggestions >to > >>the headaches and stomach aches...thanks > >> Hill > >> > >> > >>At 12:48 PM 11/14/1999 -0700, you wrote: > >> > > >> > > >> >Dear Ursula: When I worked for a gastroenterologist, his definition >was > >> >inflammatory was just worse off shoot of IBS, which could be triggered >by > >> >emotions or foods that set off the cramping episodes. Either way a >BRAT > >>diet > >> >was the answer when things got out of hand along with a good > >>antispasmodic > >> >to control the cramping,he also used fiber to control the either > >>excessive > >> >diaherrea or constipation going on. Hope that helps it kind of a > >>simplistic > >> >way of looking at it, > >> >regards, > >> >annette and alissa > >> > > >> > > >> >> > >> >>Reply-To: PedPIDonelist > >> >>To: <PedPIDonelist> > >> >>Subject: RE: (no subject) > >> >>Date: Sat, 13 Nov 1999 22:22:03 -0500 > >> >> > >> >>Debbie - I'm operating completely under assumptions here but I guess >the > >> >>only way to judge severity would be to take xrays and look at any > >>breakdown > >> >>in joint fibers or muscle tissue. I as her mom go by what she keeps > >>from > >> >>using by choice or what she gripes about the most on any given day. > >>Lately > >> >>it's been her ankles and feet. The only thing we've ever seen swell >or > >> >>have > >> >>the redness/fever is her fingers and ankles. We've thought lately of > >> >>getting a strip thermometer and laying it across the joints to see if >it > >> >>would register any fever. May or may not pan out but we're grasping >at > >> >>straws until the workup is completed. Dr. Harville has gone to >Arkansas > >>to > >> >>head up a BMT center. It was very nice having him work with this >since > >>he > >> >>was also a ped rheumatologist but now it falls to our ped. The >current > >> >>immuno (Dean Firschein) agrees that PID's are predisposed to >autoimmune > >> >>problems but hasn't said much else. I know our ped will involve him >in > >>the > >> >>final chit chat about all the decisions. If they decide that JRA is >the > >> >>problem then I'm sure the local rheumy (ped/adult guy) will be > >>consulted. > >> >>The ped has talked to us about how the usual med used for >inflammation > >> >>(Naproxen) is not a good one for her because it causes GI problems >and > >>she > >> >>has a colorful GI history. So for now she gets Advil every 6 hrs. >I'm > >> >>hoping the aqua therapy starting this week helps (even though its >meant > >>to > >> >>treat something completely different). > >> >> > >> >>Now, question from me. To Debbie or anyone.. What's the difference > >> >>(besides positive pathology results) symptom-wise between >Inflammatory > >> >>Bowel > >> >>and Irritable Bowel? My scopes always come back negative for Crohns >and > >> >>Celiac but I'm on 4 different meds (Librax, Doxepin, Sal-tropine, > >>Kuzyme) > >> >>for Irritable Bowel. Last GI appointment (Tuesday) I had finally >gained > >>a > >> >>pound (107 now). Just curious. > >> >> > >> >>Ursula - & Macey (4 yr old w/CVID) mom > >> >> > >> >> > >> >> > >> > >>------------------------------------------------------------------------ > >> >>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 >> > >> > > >> >>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. > >> > > >> > >> > >>------------------------------------------------------------------------ > >>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 >> > > > >>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. > > > > >------------------------------------------------------------------------ >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 October 21, 2008 Report Share Posted October 21, 2008 http://www.notmilk.com/leukemia.html Interesting article that came across my kefir-making list, and thought I'd share. As a raw milk drinker... I take a step back and thank the Gods that I know where my milk comes from <grimaces> Candace Musmeci CaeletNox@... Newburgh, NY ~Dipping into the Living Well...One product at a time~ Quote Link to comment Share on other sites More sharing options...
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