Guest guest Posted March 4, 1999 Report Share Posted March 4, 1999 Hi Gail, We've currently used just about every stomach med on the market. Nothing seems to help. She was complaining last night and was very bloated. She had diahrrea for 6 straight days. She's had either vomiting or diahrrea or both for the whole month of Feb. She's also had a throat and sinus infections this month. I'm so glad I found this group. Thanks Michele Re: (no subject) From: G6517@... Hi Michele, Welcome to the group! It really is nice to have other parents who are dealing with the same issues every day. I think that the comments from Barb are really on target with the stomach issues. Are they using anything like Tagamet, etc.? That has helped some for us. Gail Kinsey's Mom - 6 1/2 with CVID ------------------------------------------------------------------------ We have a new web site! http://www.onelist.com Onelist: The leading provider of free email community services ------------------------------------------------------------------------ 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. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 1999 Report Share Posted June 10, 1999 Blessed be the Lord, my rock, who trains my hands for war, and my fingers for battle. My rock and my fortress, my stronghold and my deliverer, my shield, in whom I take refuge, who subdues the peoples under me. Psalm 144. 1-2 Hi, This is something that I got and thought I would foward to everyone. I apoligize if you have already seen it before. Brings a tear to my eye though. > " Butterfly Kisses " > > We often learn the most from our children. Some > time ago, a friend of mine punished his > 3-year-old daughter for wasting a roll of gold > wrapping paper. Money was tight, and he became > infuriated when the child tried to decorate a box > to put under the tree. > Nevertheless, the little girl brought the gift > to her father the next morning and said, " This > is for you, Daddy. " He was embarrassed by his > earlier overreaction, but his anger flared again > when he found that the box was empty. He > yelled at her, " Don't you know that when you > give someone a present, there's supposed to be > something inside of it? " The little girl looked > up at him with tears in her eyes and said, " Oh, > Daddy it's not empty. I blew kisses into the box. All for > you, Daddy. " The father was crushed. He put his > arms around his little girl, and he begged her > forgiveness. My friend told me that he kept > that gold box by his bed for years. Whenever he > was discouraged, he would take out an imaginary > kiss and remember the love of the child who had put > it there. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 1999 Report Share Posted June 15, 1999 Dear Amber: I am sorry to hear you had a bad time at Disney. But I am Glad Kelsey had such a good IVIG infusion. I am going to try the liquids and Benadryl next time. Welcome home and glad to hear from you, I hope the kids are feeling better. regards, annette mom to alissa cvid,asthmatic > >Reply-To: PedPIDonelist >To: PedPIDonelist >Subject: (no subject) >Date: Tue, 15 Jun 1999 18:19:26 -0700 > > > >Hi everyone, > we are back from disneyland. The kids and dh got the stomavh flu and >threw up the whole time. It is the story of my life! LOL > On a better note, Kelsey had her 4th IVIG infusion today. She did so >well i cant even believe it. She made only whines when they put the >needle in and took it out compared to hours of uncontrolable crying. Not >only that but the bandage they put on the site after the infusion, >usually stays for a week with panic attacts if i even get near the area. >Well she already took it off herself. I am very hopeful that she is >adapting well. They also gave her some new meds to prevent the reaction >she had the last time. It was benadryl IV, a steroid IV, and then oral >advil. > I know that some of you are having a rough time and i am praying for >all of you. >Amber > >------------------------------------------------------------------------ >Looking to expand your world? >http://www.onelist.com >ONElist has 170,000 e-mail communities from which to choose! >------------------------------------------------------------------------ >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 15, 1999 Report Share Posted June 15, 1999 Hi Amber, that is great news, except for the throwing up part. I am glad that she seems to be adjusting to the IVIG. , wife to Preston, mother to Shelbie 8, Mandy 3 and 13 months Moderator of Military EFMs, IVH-Hydrocephalus and NICU Families Registered Chat for Preemies Friends and Family Do not judge, so that you may not be judged. For with the judgment you make you will be judged, and the measure you give will be the measure you get. why do you see the speck in your neighbor's eye, but do not notice the log in your own eye? You hypocrite, first take the log out of your own eye, and then you will see clearly to take the speck out of your neighbor's eye. 7.1-5 (no subject) > > >Hi everyone, > we are back from disneyland. The kids and dh got the stomavh flu and >threw up the whole time. It is the story of my life! LOL > On a better note, Kelsey had her 4th IVIG infusion today. She did so >well i cant even believe it. She made only whines when they put the >needle in and took it out compared to hours of uncontrolable crying. Not >only that but the bandage they put on the site after the infusion, >usually stays for a week with panic attacts if i even get near the area. >Well she already took it off herself. I am very hopeful that she is >adapting well. They also gave her some new meds to prevent the reaction >she had the last time. It was benadryl IV, a steroid IV, and then oral >advil. > I know that some of you are having a rough time and i am praying for >all of you. >Amber > >------------------------------------------------------------------------ >Looking to expand your world? >http://www.onelist.com >ONElist has 170,000 e-mail communities from which to choose! >------------------------------------------------------------------------ >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. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 7, 1999 Report Share Posted July 7, 1999 Dear Amber: Hope Kelsey is feeling better. Alissa is coming down with sinusitis. Of course right before we leave for back east. It sounds like you got some real deals at bugle boy. It has started the monsoon season here. We needed the rain really bad. We watched fireworks at home. Take care and have a good week. God Bless annette mom to alissa cvid,asthmatic > >Reply-To: PedPIDonelist >To: <PedPIDonelist> >Subject: (no subject) >Date: Tue, 6 Jul 1999 09:42:50 -0000 > >Hi everyone, > Glad to see some of you are back. It has been lonley on here! LOL Noreen >i am sorry to hear about your pregnancy. Lee ann let us know how ethan is. > Today kelsey has a runny nose. we will see what happens it should be >intresting. Today is 21 days since her last infusion and that iis how long >it lasts. She has her next one on thurs. I think it is cool just thinking >she may actually fight it! LOL. > We dident do alot this weekend. Went to the outlet mall yesterday that >was fun. Bugal boy had a huge sale. Nice boys shirts for 3.00 so i got a >few for gifts. > It is nice a warm today but getting too warm for me. It is a pain having >to watch how much i go in the sun! LOL. > Well hope everyone who isent back is having a great time. >Amber Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 7, 1999 Report Share Posted July 7, 1999 Dear : That's Beautiful for to finally let it out!!!!!!!! I hope he keeps on flourishing. It shows you that you never know what is going to happen. That's the best news of the day. God Bless, annette mom to alissa cvid,asthmatic > >Reply-To: PedPIDonelist >To: " BSR " >Subject: (no subject) >Date: Wed, 7 Jul 1999 11:00:48 -0400 > > > >Hi everyone (addressed to everyone because this is going out to more than >one person), >Well, I just had to write and share some really happy news. and I >were playing/therapy last night and he was really getting into it and well, >he made the sounds goo, daa, and baaa several times. I know it doesn't >sound like much, but this was a first for him and as many of you know, he >turned 14 months old yesterday. I have been waiting to hear these types of >sounds out of him for ages. It kinda gives me more hope that he will be >verbal when he gets older. > >Anyhoooo, just felt like announcing it to the world today, hahahaha!!! > >Toodles for now!! > >, wife to Preston, mother to Shelbie 8, Mandy 3 and 13 months >Moderator of Military EFMs, IVH-Hydrocephalus, NewView and NICU Families >Registered Chat for Preemies Friends and Family. >---------------------------------------------------------------------------- >---------------------------------------------- >HEART-----Heart, intellect, awareness, mind, inner person, inner feelings, >deepest thoughts, inner self. > > > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 7, 1999 Report Share Posted July 7, 1999 HOORAY FOR DAVID!!!!!!!! I think that this is such wonderful news....thank you for sharing it with us!!!! Autumn mom to Mark Cd5-Cd19 PID/ GERD, A1A, Samter's Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 1999 Report Share Posted July 8, 1999 Dear : God Bless you, I think you are doing a courageous thing. My daughter reacted to the Varivax vaccine and I tried to go to Merck who makes it and they got clemency from the government. All that came out of our lawsuit is that now they must have a warning label on their vaccine stating not to give the vaccine to immune deficient individuals. I am sorry to hear about your son, after five years of physical;speech;occupational therapy it was a long journey and you can make it. I wish you the best of luck and keep faith in the Lord because he is the true strength. God Bless you and your family. annette lennon mom to alissa cvid,asthmatic,ataxia,( left over from varivax) >From: lauras@... >Reply-To: PedPIDonelist >To: PedPIDonelist >Subject: (no subject) >Date: 7 Jul 1999 20:52:35 -0000 > >From: lauras@... > >Hey everyone! >My name is and I have a son who will be 5 on July 10. He was very >healthy when he was born and when he received his 4 month baby shots he >completely went down hill. >It was almost 2 years before anyone would listen to me when I said it came >from his baby shots which included the Hepatitis B vaccine. Well, don't >you know it was the Hep B vaccine which destroyed his immune system. He >receives Sandoglobulin treatments every 3 weeks at Pitt Memorial in >Greenville, NC. He receives speech, physical, occupational therapies and >wears AFO's (leg braces) on both legs. He starts kindergarten in August >and will be getting some special education classes along with his regular >classes. >I have talked with major individuals about the Hep B vaccine and was told >that if I could get enough response and back-up information I could go do >Washington, DC to try and stop infants and toddlers from getting the >vaccine. We hear about everyone getting Hep A & C. But do really hear any >stories about Hep B? The government wants us to be responsible parents and >have our children vaccinated, but when we do, they get sick or injured from >them, they turn a deaf ear. > >I have been dealing with my son's illness for 41/2 years now and have >become some what an expert to the suffering children go through. I also >care for my father who has had a massive stroke and is home bound. Two >houses, two disabled people and the determination not to let any other >children or adults suffer as much as I have seen my son suffer. >My point on all this is, if you have a child who is now or close to the age >of 5 years old or you know for sure you have had the Hepatitis B vaccine >and believe your illness or injury is related to it, please e-mail me back >with the dates and your condition. Just a short surmise will do. I >understand the disabilities from CVID, my son goes through every day. I >have been reading all your messages and everyone hits home with me and when >you look at all the messages I don't just see hope and encouragement, I see >determination to lick this mess in the pants! >We have never given up nor will we. We will do what it takes to get our >children and the adults recognized with these conditions and hopefully a >breakthrough without the infusions and the tears and pain. I am going to >do what I can on my part to bring to light this disability and I hope you >will e-mail me back with your input. Please sign it with your first name, >city and state so I can prove that this is happening all over the country >and not just here in North Carolina. >My thoughts and prayers are with all of you and I hope you will let me help >you fight for a better way of controlling our rights as parents and as >adults we have the right to say yes or no to vaccinations and treatments >out there. >Thank You, Savin (mother of a CVID, chronic sinuitis, AFO's,and a >fighter of all human causes) > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 1999 Report Share Posted July 8, 1999 Dear Amber: Thanks for the support. Alissa has started to see a psychologist along with the rest of the family to deal with the same issue. YOU* are so smart to have Kelsey seeing one now. I hope Kelsey is doing better. Will write when we return from back east. God Bless and take care annette mom to alissa cvid,asthmatic > >Reply-To: PedPIDonelist >To: <PedPIDonelist> >Subject: Re: (no subject) >Date: Wed, 7 Jul 1999 15:30:47 -0000 > > > >Sorry to hear alissa is having a hard time. Kelsey had a port placed before >we even started the IVIG b/c she was so afriad of needles that she was far >too tramatised already. We use emla over the port and it seems to work >really well. Last infusion went so well i was surprised. She has been >seeing >a play therapist to deal with all the treatments and docs and it seems to >all be comming together finally. I hope i can hear the same from you soon. >Amber > (no subject) > >> >>Date: Tue, 6 Jul 1999 09:42:50 -0000 > >> >> > >> >>Hi everyone, > >> >> Glad to see some of you are back. It has been lonley on here! LOL > >>Noreen > >> >>i am sorry to hear about your pregnancy. Lee ann let us know how >ethan > >>is. > >> >> Today kelsey has a runny nose. we will see what happens it should >be > >> >>intresting. Today is 21 days since her last infusion and that iis how > >>long > >> >>it lasts. She has her next one on thurs. I think it is cool just > >>thinking > >> >>she may actually fight it! LOL. > >> >> We dident do alot this weekend. Went to the outlet mall yesterday >that > >> >>was fun. Bugal boy had a huge sale. Nice boys shirts for 3.00 so i >got >a > >> >>few for gifts. > >> >> It is nice a warm today but getting too warm for me. It is a pain > >>having > >> >>to watch how much i go in the sun! LOL. > >> >> Well hope everyone who isent back is having a great time. > >> >>Amber > >> > > >> > > >> >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 9, 1999 Report Share Posted July 9, 1999 Congratulation! This is just the beginning for him. Thank you for the best news I've heard all day. Becky (mom to Ben, 21 mo., CVID, asthma) (no subject) > > > Hi everyone (addressed to everyone because this is going out to more than > one person), > Well, I just had to write and share some really happy news. and I > were playing/therapy last night and he was really getting into it and well, > he made the sounds goo, daa, and baaa several times. I know it doesn't > sound like much, but this was a first for him and as many of you know, he > turned 14 months old yesterday. I have been waiting to hear these types of > sounds out of him for ages. It kinda gives me more hope that he will be > verbal when he gets older. > > Anyhoooo, just felt like announcing it to the world today, hahahaha!!! > > Toodles for now!! > > , wife to Preston, mother to Shelbie 8, Mandy 3 and 13 months > Moderator of Military EFMs, IVH-Hydrocephalus, NewView and NICU Families > Registered Chat for Preemies Friends and Family. > -------------------------------------------------------------------------- -- > ---------------------------------------------- > HEART-----Heart, intellect, awareness, mind, inner person, inner feelings, > deepest thoughts, inner self. > > > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 1999 Report Share Posted July 20, 1999 Dear : Hope you all stay well from the trip to the shore. We just got back from Pa. and we had beautiful weather. Also my daughters asthma cleared up the whole time we were there?! Interesting, the warmer weather does not agree with her. Hope the rest of the week is good. take care, annette mom to alissa cvid,asthmatic > >Reply-To: PedPIDonelist >To: PedPIDonelist >Subject: (no subject) >Date: Mon, 19 Jul 1999 19:22:35 -0400 (EDT) > > > > > >Hi we got back this afternoon from the Jersey shore. hated the >ocean again this year. Wouldn't go anywhere near it. Evan loved it >bought him a boogie board and he had the time of his life. What was >too cold for abby. of coarse got no color at all. she is as pale >as ever. She is starting the sniffles her voice is exteremly hoarse >and is complaining of a sore throat. Wait to see what tomorrow brings. > > >Trying to get through all my emails. > >Becky good luck tomorrow. Let us know how things go. Prayers with you >on the sweat test. Sending vives for low #. > >Michele Let us know how the MRI goes. had one in Apr. The >medicine they gaveher to fall asleep was AWFUL!!!!! She had the >highest does and she wasn't able to walk for 24 hours. What they found >on was 2 small strokes. God Bless > >Ursula, I like the bear ideas. > >Well wishing everyone well. And God Bless >=== > and >(neutropenic and immune deficent) >mom to Evan 6, 4 and Abby Rose (almost 2) >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 1999 Report Share Posted July 20, 1999 Hi , hope is doing okay and it doesn't turn into anything too bad. After I took Ben to the beach two weeks ago , he had a runny nose for two days. But he loved it, wouldn't stay out of the water. The ped. called me last week and said his xray show pneumonitis and today they retook it=looks much better. The people at the hospital were so awful today. They had NEVER DONE a sweat test before. I just can't believe that they would schedule a test know ing no one there knew how to do it. Needless to say, not enought sweat for the test. My husband took him, I had kids at the fair with bunnies for 4H, and my husband said he was sweating his little diaper off! I tell ya. Well, I won't go there for the re-do, that's for sure. Take care. Hope 's okay. Becky (mom to Ben, 22 mo. CVID, asthma) (no subject) > > > > > Hi we got back this afternoon from the Jersey shore. hated the > ocean again this year. Wouldn't go anywhere near it. Evan loved it > bought him a boogie board and he had the time of his life. What was > too cold for abby. of coarse got no color at all. she is as pale > as ever. She is starting the sniffles her voice is exteremly hoarse > and is complaining of a sore throat. Wait to see what tomorrow brings. > > > Trying to get through all my emails. > > Becky good luck tomorrow. Let us know how things go. Prayers with you > on the sweat test. Sending vives for low #. > > Michele Let us know how the MRI goes. had one in Apr. The > medicine they gaveher to fall asleep was AWFUL!!!!! She had the > highest does and she wasn't able to walk for 24 hours. What they found > on was 2 small strokes. God Bless > > Ursula, I like the bear ideas. > > Well wishing everyone well. And God Bless > === > and > (neutropenic and immune deficent) > mom to Evan 6, 4 and Abby Rose (almost 2) > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 27, 1999 Report Share Posted July 27, 1999 , 's been on meds for ear, lung and sinus infection. He's constantly on the long-term antibiotic, but continues to get sick. That is when they boost him up to the stronger meds. He just started the acidophalus last week. Hrib-Karpinski wrote: > , What's on the antibiotic for? Unfortunately most of our kids > need longer & stronger doses that the average child. If we have something > going on, our Dr. doesn't even mess w/the 10 days, we get at least 21 days. > Also,one important thing. Do you give any acidophalus or any other > intestinal flora? I think that 90-100% of the PID kids uses it & I highly > reccomend it. When on any antibiotics, they eat away at all the " good > bacteria " in the stomach & the intestines. Which can cause many bad > complications later on. His vomiting may actually be real not forced. > acidphallis can possibly help that too. > > Also, when Zach was little, he hated some of the meds, so I would ask for > tablets(be sure to tell them you'll be crushing). I got a mortor & pesto > from a kitchen store, & I crushed his meds & mixed them in 1 tsp of > strawberry applesauce. This made life so much easier!!! And Zach was able > to swallow pills by about 3 or 3 1/2, so then life became much easier. > > Let us know how things are going. > > PS when you send a reply, send it it PedPIDonelist that way all the > people on the list can read it too. We all seem to benefit from each > other's posts. And usually we'll get 6 or 8 talking about the same things. > I have been so greatful of this list. It has helped us tremendously. > > Hugs to . > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 1999 Report Share Posted July 30, 1999 Hi , we really have alot in common. My son Ben is 22 months old and he has been constantly sick with one thing or another. Chronic diarrhea, pneumonia, pneumonitis, ear infections that won't clear up, respiratory infections, etc. He also has asthma. The ped said he has hypogammaglobulinism. I learned a little about it under the name Common Variable Immunodeficiency (CVID). I asked about it, she said she kind of considers it the same thing. After so many courses of antibiotics I finally said let's get more agressive about this. So she sent me to a gastroenterologist and an Immunologist. She we have got most of the tests done, waiting for the next appts. to get their opinions. Ben doesn't get IVIG, unlike alot of the kids here, at least not yet. So I think we have some similiar things going on. The ped stays he'll " probably " outgrow it, but I worry too-what if he doesn't and what if I don't do all I can for him now? The questions we moms torture ourselves with, LOL. Anyway, anytime you want to talk I'm here, and their are some very knowledgable and friendly people here. Take care, Becky (mom to Ben, 22 mo. CVID, asthma)----- Original Message ----- To: <PedPIDonelist> Sent: Thursday, July 29, 1999 9:16 AM Subject: (no subject) > > > Hello everyone. > > I started with this group because I was told that my son has an IGG > Deficiency. After reading comments over the last week or so, I see that > there is much more involved with this than I thought. > I trust my sons doctor, but I wonder if there is more to my sons > condition than either of us are aware of. > Let me give some history. He has had tubes in his ears that constantly > get clogged (chronic ear infections), throat, mouth (thrush), sinus and > lung infections since he was three months old. He is now almost 2. He's > been put on the long term antibiotics several times, but as soon as he > goes off them, he's sick again. We've checked allergies (milk, wheat, > cheese) and that was fine, checked for cystic fibrosis - negative, and > HIV - negative. The doctor said he'll probably grow out of it. > Have any of your children had these same symptoms, and it ended up being > something that your children won't grow out of? Should I just continue > doing what the ped. suggests (continue w/ antibiotics), and wait until > he's older to see if he grows out of it? or should I get him in to a > specialists? I know that seeing a specialist isn't a bad idea, but maybe > it is something that he'll grow out of and I should just give it a > while. I keep going back and forth with this. I know his problems are > small compared to some of you guys...or are they? All I know is it's so > hard to see my baby sick all the time and if theres more I can do to > help him...I don't want to do that. > > I know you guys are a support group, and not doctors, but I would really > like some input. > > > > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 1999 Report Share Posted August 16, 1999 , Thank you so much for the info. T0872@... wrote: > From: T0872@... > > JULIE, > THE IMMUNE DDEFICIENCY FOUNDATION HAS A REFERRAL LIST OF IMMUNOLOGISTS AND > ALSO ALOT OF GREAT MATERIALS. TEHY CAN BE REACHED AT 1- > > SANDRA, MOTHE ROF PARKER, IGG DEFICIENCY > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2006 Report Share Posted February 27, 2006 Well I lost that bid on ebay the old Bullworker was going for $42+ dollars so I decided to buy a new one, why skimp on a few bucks. I now need some advice I have researched on line the Bullworker X5 which is made in Japan and sold in the USA, the Bullworker x5 trainer sold in the UK and the Bullworker 3 sold in Australia made in India} So has anyone here bought any of these units and if so, I would appreciate honest opinions and input regarding spring strength ease of working out etc. Thanks in advance for all your help bert Email- berthern22056@... __________________________________________________ Quote Link to comment Share on other sites More sharing options...
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