Guest guest Posted March 3, 1999 Report Share Posted March 3, 1999 Hi , My name is Gail . I have a 6 1/2 year old daughter, Kinsey, with CVID. She receives 15 grams of Gammaimmune 10% every 4 weeks. She is also on Flonase, Zantac and Zrytec for her sinuses. We live in Florida too. We see Dr. Sleasman at the University of Florida. I am a volunteer for the Immune Deficiency Foundation and if I can be of any help, please don't hesitate to call me . (You can call collect or leave a number and I will call back.) We have a variety of literature that I can have sent to if you would like. We also have some great resources for insurance and disability assistance if you need them. That also goes for all the other folks out there. Who is 's immunologist? We are very lucky to have some wonderful immunologist's in Florida. We have a family retreat for patients in Florida in August. It's a weekend that we provide education, fun and fellowship for kids and their families. If you are interested, please let me know so that I can send you information as we get closer. It was really a great time for all. I look forward to hearing from you. Gail Gmoore6517@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 1999 Report Share Posted March 3, 1999 Hi , My name is Gail . I have a 6 1/2 year old daughter, Kinsey, with CVID. She receives 15 grams of Gammaimmune 10% every 4 weeks. She is also on Flonase, Zantac and Zrytec for her sinuses. We live in Florida too. We see Dr. Sleasman at the University of Florida. I am a volunteer for the Immune Deficiency Foundation and if I can be of any help, please don't hesitate to call me . (You can call collect or leave a number and I will call back.) We have a variety of literature that I can have sent to if you would like. We also have some great resources for insurance and disability assistance if you need them. That also goes for all the other folks out there. Who is 's immunologist? We are very lucky to have some wonderful immunologist's in Florida. We have a family retreat for patients in Florida in August. It's a weekend that we provide education, fun and fellowship for kids and their families. If you are interested, please let me know so that I can send you information as we get closer. It was really a great time for all. I look forward to hearing from you. Gail Gmoore6517@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 1999 Report Share Posted March 28, 1999 Hey Ursula, Kinsey also has had neutropenia for short periods of time. It seems to resolve by itself. They just sat back and monitered it. We haven't had a problem with it recently. Gail Kinsey's Mom - CVID IDF Volunteer Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 1999 Report Share Posted May 4, 1999 Hi, Just a thought about spots on hands. I don't think I have the same thing experiences b/c I don't get tons of them and they last longer than an hour. But, I thought, well, we're all different and are immune systems do wacky things, so.... ever since I had hand-foot-mouth virus and I had it bad, I get red spots on my hands and feet (usually only 1-3) that hurt and sting and feel yucky (they're like blisters under the skin) whenever I am getting sick with something else. So, if I have a flare-up with a sinus infection, I end up with these spots. Don't know if it's the same thing and I haven't found any tx for it. Just time and patience (we seem to have to have alot of that, don't we?)..... Anne, - CVID, mother of SAM (?????????????) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 1999 Report Share Posted May 4, 1999 Hi, Just a thought about spots on hands. I don't think I have the same thing experiences b/c I don't get tons of them and they last longer than an hour. But, I thought, well, we're all different and are immune systems do wacky things, so.... ever since I had hand-foot-mouth virus and I had it bad, I get red spots on my hands and feet (usually only 1-3) that hurt and sting and feel yucky (they're like blisters under the skin) whenever I am getting sick with something else. So, if I have a flare-up with a sinus infection, I end up with these spots. Don't know if it's the same thing and I haven't found any tx for it. Just time and patience (we seem to have to have alot of that, don't we?)..... Anne, - CVID, mother of SAM (?????????????) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 1999 Report Share Posted May 31, 1999 Mike has never complained about cricks in the neck, thankfully! hello > > > - congrats on Zach's culture report. hopefully the bug is gone >for good. Have you had a chance to ask the immuno about Zach's PID? > > - Gavin's grammy - welcome to the list. you'll recognize a few >names from the SCID list. I'm sorry to hear that Gavin's still on the >oscillator but hopefully he'll turn the corner soon. My thoughts and >prayers are with you and your family. > >To everyone - on the hypeflexible/EDS subject - does anyone have problems >with their child having " cricks " in their neck? Macey can just get one in >the middle of the day or sometimes she'll wake up from a nap with one. Most >of the time she'll still get up but just be very stiff necked, a few other >times she'll completely refuse to move and will just sit there whimpering >for more than an hour. any experiences? > >Ursula Holleman >Macey's mom (4 yr. old with CVID, asthma, GERD, sinus disease, grade I left >kidney reflux, Sensory Integration Disorder) >ICQ # 28592349 >http://www.icq.com > >PedPID email list archives >http://www.netpage.org/PedPID/_PedPID/ > >PedPID email list introductions >http://www.netpage.org/PedPID/_PedPID/introduction.htm > > > > >------------------------------------------------------------------------ >Having difficulty getting " in synch " with list members? >http://www.onelist.com >Try ONElist's Shared Calendar to organize events, meetings and more! >------------------------------------------------------------------------ >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 7, 1999 Report Share Posted June 7, 1999 Helen, You bring up a good point aboout the pools...Tom & I go back and forth on this issue. I'm the " mom the protector " and he's the " just do it dad " . So here's what we've come up with. We go to only our neighborhood pool or to friend's private pools. We don't go to the mass-public pools like " white water " . We stay away from ponds, lakes and rivers but do go to the ocean. When we come home, we immediately clean out his nose with the rino-flow and make him shower. Keeping our fingers crossed, this has worked so far. It keeps a nice balance, so he still gets to be a regular kid. Although Zach's an excellent swimmer, he doesn't stay in the water too long. He has trouble with his body temp. so when he goes, he's never in for more than 15 min. b/c he's too cold. Yesterday it was 92 here and he went swimming for 15 min. when he got home, after a hot shower, he put on a long sleeve shirt, long pants and a sweater! I couldn't even bear to look at him, but he said he wasn't hot. He did finally take off his sweater but only after roller blading for about 30 minutes. Wife to Tom, Mom to 6 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 June 7, 1999 Report Share Posted June 7, 1999 Helen, You bring up a good point aboout the pools...Tom & I go back and forth on this issue. I'm the " mom the protector " and he's the " just do it dad " . So here's what we've come up with. We go to only our neighborhood pool or to friend's private pools. We don't go to the mass-public pools like " white water " . We stay away from ponds, lakes and rivers but do go to the ocean. When we come home, we immediately clean out his nose with the rino-flow and make him shower. Keeping our fingers crossed, this has worked so far. It keeps a nice balance, so he still gets to be a regular kid. Although Zach's an excellent swimmer, he doesn't stay in the water too long. He has trouble with his body temp. so when he goes, he's never in for more than 15 min. b/c he's too cold. Yesterday it was 92 here and he went swimming for 15 min. when he got home, after a hot shower, he put on a long sleeve shirt, long pants and a sweater! I couldn't even bear to look at him, but he said he wasn't hot. He did finally take off his sweater but only after roller blading for about 30 minutes. Wife to Tom, Mom to 6 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 February 1, 2003 Report Share Posted February 1, 2003 In a message dated 1/29/2003 8:58:47 AM Mountain Standard Time, kathylr@... writes: > Hello Kari and welcome to the list. I also have a nine year old (girl) with > OCD, she had an abrupt onset of symptoms at age four. She is doing well on > a combo of SSRI, small dose of Risperdal, and Cognitive Behavior Therapy. > Thank you for the welcome. Chase is in counseling right now and is on a waiting list to get in with the psychologist to be evaluated and get on some medication. Unless there is a cancellation, it is a 5 week period before we can get in to see her. Kari Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 7, 2003 Report Share Posted July 7, 2003 Hi Bobbi, welcome to the list! It sounds like you are moving in the right direction to help your son minimize the impact OCD is having on his life. I'm not clear on how long he's been taking Paxil, but these types of meds take 2 months or more to show their full impact, so he may show even more relief from it in the weeks to come. I would suggest you think about Cognitive Behavior Therapy with Exposure and Response Prevention for your son rather than the play therapy. CBT/ERP is the first line treatment suggested by experts to treat OCD in children. It is the only type of therapy shown to reduce OCD symptoms. Play therapy and other types of therapy can be helpful in other ways, but if the goal is to reduce and control OCD symptoms, CBT is the way to go. It can be hard to find a good child therapist expert in OCD treatment, but I can attest that the combo of SSRI plus this type of therapy is the fast track to reducing OCD to livable levels. My daughter had an abrupt onset of OCD when she was one month shy of turning five (she's nine now) so I know how distressing this disorder can be for a younger child and the family as well. As far as making things easier on your son, by all means be supportive BUT doing things a certain way according to OCD's rules will make the OCD more intense, not less. Helping your son do compulsions (such as answering repeating questions) makes them stronger and more prominent. I think it's natural to try to help our kids, but this type of help may end up helping OCD take over more of their lives. As a new member, you may want to take some time to check out the group files and archives. There is a wealth of info there and it's a relatively quick way to become expert in OCD and its treatment. Again welcome. Please write again and let us know how things are going. Take care, Kathy R. in Indiana ----- Original Message ----- From: Bobbi Jo My name is Bobbi and I live on Cape Cod. I have 2 children, and just recently my youngest was diagnosed with OCD/anxiety disorder. This is all new to me and I feel a bit overwhelmed at times. I can't imagine how my son feels. He is going to be 6 years old in a couple weeks and is definitely all boy. His psychiatrist has put him on Paxil and Buspar. He also sees a therapist once a week and she does play therapy with him. These things seem to be working but I am sure there are things that I can do to make things easier for him. I just don't know what those things might be. I am looking forward to getting to know everyone and hear others stories so I can continue to help my son and know that neither one of us are alone in this. Thank you again for letting me join your group. Bobbi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 2004 Report Share Posted June 25, 2004 Younus, I don't know if the bullworker is good for fat loss per se. Fat is inactive and just lies there, muscle uses calories to exist, so the more muscle you have the more fat/calories you burn. So I would say, any exercise that changes your muscle to fat ratio, which is really ANY exercise will help. Alan Hello Hi, Can anyone tell me, if the bullworker is good for fat loss? or is this just a myth? thanks ALL-NEW Yahoo! Messenger - sooooo many all-new ways to express yourself Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 2004 Report Share Posted June 25, 2004 Younus, I don't know if the bullworker is good for fat loss per se. Fat is inactive and just lies there, muscle uses calories to exist, so the more muscle you have the more fat/calories you burn. So I would say, any exercise that changes your muscle to fat ratio, which is really ANY exercise will help. Alan Hello Hi, Can anyone tell me, if the bullworker is good for fat loss? or is this just a myth? thanks ALL-NEW Yahoo! Messenger - sooooo many all-new ways to express yourself Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 2004 Report Share Posted October 1, 2004 Posting your download site for the ebook you reference is fine. Britt > Hi to all, > > I just found out about this group and joined a few days ago. > > My brother and I convinced my father to buy us a Bullworker II when > we > were just into our teens in the early '70s (I'm 48 now). I still have > that unit, and it still works fine. It was the model that was out > just > before the model that had the " Powermeter. " So it's just a bare unit. > > I believe it's really good in strengthening what you already have. > But > for more, one will have to gain weight. I've used it off and on. On > when I'm lazy to do other exercise, off when I did (things we've been > through) Atlas, Gold's gym circuit training, Mentzer's Heavy > Duty, and (my favorite) Mc's Brawn training. We all did this > from home, never joining a gym. My brother collected the barbells and > dumbbells for the weight training. My brother and I also practiced > martial arts. With Brawn's twice a week training, I sometimes put in > B-II workouts in between. > > We only knew the B-II to be an isometric apparatus, even if a couple > of " circulation " routines were included in the manual then. Now I see > that there are isotonic(?), 1-second routines in the regimens? I'm > still to read the 1980s manual in detail. I downloaded it from the > files section and plan to make a Word document out of it and make it > into a PDF file. If the result is small enough, I'll be uploading it. > > But for me, nothing beats skipping rope for circulation exercise. > > A " problem " we had was the 60% to 70% application of strength. Our > macho mindset simply could not allow this, and we were probably > contracting near 100%. From the beginning, though, we were warned by > the manual itself against holding one's breath (in). And we were > usually exhaling in the hold phase (what with our martial arts > training). > > Do/did any of you have problems with this 60% to 70%, too? > > How would you know this level? > > The manual said contract fully and then release a little. > > Realistically (I think), it would be something like: If I could carry > a 200-lb barbell for one rep, then I just put 120-lbs, lift it > halfway > and hold for 7 to 10 seconds -- does this achieve the same effect as > a > Bullworker/isometric contraction? If so, then a proper 60% to 70% > contraction would really be a LOT less than what we were doing! > > I would think Bullworker workouts would fit into a recommendation I > have in a report I wrote up on how to lose fat. It's a free ebook > anyone can download, but I have to know first if I could post the > download site. > > Well, that's all for now. I'm glad I found this group. > > Gerry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2008 Report Share Posted January 31, 2008 My oldest autistic daughter makes a lot of noise stemming - she is a very sensory child - and she causes the same problem. From the meetings we have had regarding her IEP - we have decided that she needed a sensory diet in the classroom to assist. You didn't mention if you did this or not or if the teachers program is sensory based. It is obvious that your child is responding to either a lack of stimulation in his/her nervous system or not enough - can this be examined further. And, regarding the IEP - is removal from the classroom a documented approach - sounds extreme and it sounds like possibly - maybe another approach could be implemented with a change in the IEP. What the exact change is I cannot tell as I would probably need more information about all of the things that have been tried. Angie wrote: I am new to this group. I was searching for a site on dealing with some behavior issues we are having with my son, when I found this site.I am a mother of three children with autism. Two girls ages 6 and 9 and one son age 8. I am a substitute one on one aide for special needs children for our local public schools, and am also a member of our county's Board of MR/DD. I really can't think of anything else to tell you. If you have any question about me I will gladly answer them. I would gladly except an advice on how to handle my son's behavior issues. He goes to school just fine. His favorite part of the day is calendar time, yet he is so noisy and refuses to be quiet that he must be removed from the area so the other kids can hear the teacher. This causes him to go irrate because he is now missing calendar time. His teacher who is a 24 year special education veteran says she is out of ideas. She has tried everything she can think of to get him to be able to participate. It's not a hearing problem. We just had his hearing checked and the audiologist said "his hearing is wonderful". Any ideas would be greatly appreciated. I won't do medication. I don't think enough long term studies have been done (but that is my opinion and I have nothing against parents who use this method).Deborah Brown bzeb6@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2008 Report Share Posted February 20, 2008 Hi im new to the group. I have 2 children with autism ages 5 and 7 and a 15 year old with odd,ocd,adhd,bipolor who is currently in residential treatment. Quote Link to comment Share on other sites More sharing options...
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