Guest guest Posted May 7, 2004 Report Share Posted May 7, 2004 The first thing out of Macey's immunologists' mouth was that she would have to evaluate her to see if she had enough body fat to support the treatment. It seems to be a big thing to them. We will be using her stomach and thighs. Ursula Holleman and Macey's mom (9 yr. old with CVID, Diabetes Insipidus) http://www..com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2004 Report Share Posted May 8, 2004 URSELLA, I have a 13 year old who has been doing subQ for almost 2 years currently she is 4ft 6 in tall and weighs only 67 pounds. We can't use her stomach but we do rotate her thigh she gets infusions 3 times per week. It was the best thing we have done for her. She doesn't get sick as much and no more 4-5 sticks to get a line and sometimes worse. Hope this info helps. Rose mother to Stefanie, SCIDS, epilepsy, osteopenia, asthma, ADHD. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2004 Report Share Posted May 8, 2004 Kim My daughter is 13 and getting subQ times 2 years. We use a gatsby syringe pump, Baygam medication 15-18%. As for the kids chatting I think that is a great idea. My daughter faces many of the same problems, she has been getting infusions since she was 3 years old. We live in Ohio. Rose Mom to Stefanie, SCIDS, epilepsy, asthma osteopenia, ADHD. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2004 Report Share Posted May 8, 2004 To those of you with teenagers - I wonder if we could find a way for the kids to be in contact with each other. Then maybe they wouldn't feel so alone in their situation. I know Jess is really struggling with friendships right now. Kim, Brittany is 13, she would love to talk to her. Maybe by IM? Email me, will figure something out. BBsmart2@... Janet Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2004 Report Share Posted May 8, 2004 In a message dated 5/8/2004 8:46:18 AM Eastern Daylight Time, Spamsucks9@... writes: As for the kids chatting I think that is a great idea. My daughter faces many of the same problems, she has been getting infusions since she was 3 years old. We live in Ohio. We live in Ohio also. Would you possably be the one's that go to Cleveland to see Dr. Hostoffer? When I first joined this group I was told another family went to him on this group. Brittany would love to chat with someone in her shoes that is for sure! Janet, mom to Brittany CVID-age 13 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2004 Report Share Posted May 8, 2004 What a wonderful idea! I know my struggles. E-mail me your IM address and I will give them to her. Lorri ( 14 years old CVID) Re: sub Q/teenagers/504 To those of you with teenagers - I wonder if we could find a way for the kids to be in contact with each other. Then maybe they wouldn't feel so alone in their situation. I know Jess is really struggling with friendships right now. Kim, Brittany is 13, she would love to talk to her. Maybe by IM? Email me, will figure something out. BBsmart2@... Janet Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2004 Report Share Posted May 8, 2004 Janet, Yes we are. We started going to Dr. Berger because the only way Dr. Hostoffer would put our daughter on subQ ws through the study program and she would have to have a lot of visits and aditional test and we didn't want to put her through more if we didn't have to. Our insurance would pay for subQ so we tryed it. Stefanie would love to have other kids to talk to. E-mail me and let me know if your child would like to talk too. Rose Mom to Stefanie SCIDS. epilepsy, asthma, ADHD Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2004 Report Share Posted May 8, 2004 Lorri my IM address is spamsucks9 and my e-mail adress is spamsucks9@.... Stefanie would love to talk to anyone like her many times she gets upset because she feels there is no other kids like her. Rose Mom to Stefanie SCIDS, asthma. epilepsy, ADHD Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2004 Report Share Posted May 8, 2004 I guess it might help if I give my address. It is llkraft@... Re: sub Q/teenagers/504 To those of you with teenagers - I wonder if we could find a way for the kids to be in contact with each other. Then maybe they wouldn't feel so alone in their situation. I know Jess is really struggling with friendships right now. Kim, Brittany is 13, she would love to talk to her. Maybe by IM? Email me, will figure something out. BBsmart2@... Janet Quote Link to comment Share on other sites More sharing options...
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