Guest guest Posted February 2, 2004 Report Share Posted February 2, 2004 - I am sorry you feel that the list has failed to meet your expectations. With a diverse group of people come differing opinions. I hope that does well with her PID treatment and I look forward to seeing you in Raleigh in April. Ursula Holleman Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2004 Report Share Posted February 3, 2004 Hey Ursula, here. I just wanted to tell you that my decision the other day was born of frustration and anxiety due to with her continuing illness, with no treatment and what I perceived as no support from the group. You have done a great job with the group, it has been a great comfort at times. I truly feel that only some people get responded to and others, nothing. I know people lurk( I have at times) and everyone is very busy with life. I will see you in Raleigh, we are looking forward to seeing you again. Your friend Re: Ursula - I am sorry you feel that the list has failed to meet your expectations. With a diverse group of people come differing opinions. I hope that does well with her PID treatment and I look forward to seeing you in Raleigh in April. Ursula Holleman 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. To unsubscribe -unsubscribe@groups<mailto:-unsubscribe@groups>. To search group archives go to: /messages<PedP\ ID/messages> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2004 Report Share Posted February 3, 2004 - years of frustration are tied up with this disease and all the various forms of torture it has inflicted on the families. Calm thoughts and warm hearts are what have kept us going on this list. is in such good care with you and you are her true advocate. Please know that we can all relate to your situation. Hope you're deciding to stay on the list. Ursula Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2004 Report Share Posted February 3, 2004 Dear Ursula, after your, Dale's and 's kind words, I will hang out and see what happens. I think I'm in a fragile state of mind right now with the worry of Pertussis. Thanks again Re: Re: Ursula - years of frustration are tied up with this disease and all the various forms of torture it has inflicted on the families. Calm thoughts and warm hearts are what have kept us going on this list. is in such good care with you and you are her true advocate. Please know that we can all relate to your situation. Hope you're deciding to stay on the list. Ursula 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. To unsubscribe -unsubscribe@groups<mailto:-unsubscribe@groups>. To search group archives go to: /messages<PedP\ ID/messages> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2004 Report Share Posted February 5, 2004 : So glad you're hanging in for awhile. I have not been responding to people like I used to... both kids have been sick with nagging little minor things since November and between that and all the holiday dinners I got roped into (during my own illness!), I guess I'm STILL trying to catch my breath!!!! Just excuses I know, but I feel like I have been neglecting the whole list. Recently I've had to ask a question three times before a single person responded. But now that the list is so big (a good thing -- more input and more voices!!!), I just figured my subject line got lost in the shuffle. So I just kept asking over and over (finally with CAPS) until someone responded! Also, sometimes when I don't think I have the perfect answer to a post, I sit back and figure someone with better info will respond. Please don't take it personally! Hang in there! I'd miss you if you were gone and I'm glad I got to meet you in Baltimore during that first conference! (mom to Kate, born 9/19/02, dairy intolerant; and , age 5, GERD, dairy intolerant -- currently has polysaccharide antibody def, previously had transient IgG, IgA, t-cell & other defs) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2004 Report Share Posted February 5, 2004 I have to agree. I don't answer many posts myself. My daughter is IgA Deficient, asthma, chronic ear/sinus problems, and she is only 3. So even when it is an IgA question, I usually don't have the experience to answer the question. And if it's about infusions, IgG, etc., I know absolutely nothing so I don't answer any of those! In a few years after going through everything with I might have some input, but for now I'm mostly an " asker " ! Re: Ursula : So glad you're hanging in for awhile. I have not been responding to people like I used to... both kids have been sick with nagging little minor things since November and between that and all the holiday dinners I got roped into (during my own illness!), I guess I'm STILL trying to catch my breath!!!! Just excuses I know, but I feel like I have been neglecting the whole list. Recently I've had to ask a question three times before a single person responded. But now that the list is so big (a good thing -- more input and more voices!!!), I just figured my subject line got lost in the shuffle. So I just kept asking over and over (finally with CAPS) until someone responded! Also, sometimes when I don't think I have the perfect answer to a post, I sit back and figure someone with better info will respond. Please don't take it personally! Hang in there! I'd miss you if you were gone and I'm glad I got to meet you in Baltimore during that first conference! (mom to Kate, born 9/19/02, dairy intolerant; and , age 5, GERD, dairy intolerant -- currently has polysaccharide antibody def, previously had transient IgG, IgA, t-cell & other defs) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2004 Report Share Posted February 5, 2004 , did you get any info on the 504 plan that you wanted? Let me know, I can go through it with you anytime. If you have IM I am also on even though I don't have aol. Let me know. Re: Ursula : So glad you're hanging in for awhile. I have not been responding to people like I used to... both kids have been sick with nagging little minor things since November and between that and all the holiday dinners I got roped into (during my own illness!), I guess I'm STILL trying to catch my breath!!!! Just excuses I know, but I feel like I have been neglecting the whole list. Recently I've had to ask a question three times before a single person responded. But now that the list is so big (a good thing -- more input and more voices!!!), I just figured my subject line got lost in the shuffle. So I just kept asking over and over (finally with CAPS) until someone responded! Also, sometimes when I don't think I have the perfect answer to a post, I sit back and figure someone with better info will respond. Please don't take it personally! Hang in there! I'd miss you if you were gone and I'm glad I got to meet you in Baltimore during that first conference! (mom to Kate, born 9/19/02, dairy intolerant; and , age 5, GERD, dairy intolerant -- currently has polysaccharide antibody def, previously had transient IgG, IgA, t-cell & other defs) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2004 Report Share Posted February 5, 2004 , did you get any info on the 504 plan that you wanted? Let me know, I can go through it with you anytime. If you have IM I am also on even though I don't have aol. Let me know. Re: Ursula : So glad you're hanging in for awhile. I have not been responding to people like I used to... both kids have been sick with nagging little minor things since November and between that and all the holiday dinners I got roped into (during my own illness!), I guess I'm STILL trying to catch my breath!!!! Just excuses I know, but I feel like I have been neglecting the whole list. Recently I've had to ask a question three times before a single person responded. But now that the list is so big (a good thing -- more input and more voices!!!), I just figured my subject line got lost in the shuffle. So I just kept asking over and over (finally with CAPS) until someone responded! Also, sometimes when I don't think I have the perfect answer to a post, I sit back and figure someone with better info will respond. Please don't take it personally! Hang in there! I'd miss you if you were gone and I'm glad I got to meet you in Baltimore during that first conference! (mom to Kate, born 9/19/02, dairy intolerant; and , age 5, GERD, dairy intolerant -- currently has polysaccharide antibody def, previously had transient IgG, IgA, t-cell & other defs) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2004 Report Share Posted February 8, 2004 : Thanks for the offer! Kim ('s mom) gave me some great info, plus I'm getting a book from the library (slaw) that should help. I had saved previous posts from a year or so ago by Ursula and others about www.wrightslaw.com and other sites... that's been the research I've started with but there's so much to wade through! I'm thinking the book will be good as long as I get to borrow it and not pay for it! I've been putting off 's 5-year physical until I get that info together, I want to take care of the 504 plan stuff before I see the ped so he can sign off on something. Part of me thought I should hold off on this year's immune testing just in case her numbers are better than her clinical picture. Can you say Wishful Thinking!!!!! I figure that even if the ab numbers are up, we can go with " a history of immune disfunction " rather than saying there's a current problem... she's certainly missing enough preschool to warrant concern over K performance. Anyway, I may take you up on the offer of asking you more questions once I look through the book from the library. I'm going to try to keep everything simple to start with though (as far as plan requirements), we'll see how the first part of Kindergarten goes before I really start getting demanding on them! Thanks for asking -- Hope things are looking up for . (mom to Kate, born 9/19/02, dairy intolerant; and , age 5, GERD, dairy intolerant -- currently has polysaccharide antibody def, previously had transient IgG, IgA, t-cell & other defs) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2004 Report Share Posted February 24, 2004 Ursula: Thanks for your input on the tutoring issue. I'm so glad you mentioned that we might not need a tutor for Kindergarten-level work. I'd hate to " waste " fighting hard over this issue when it's something I should save for later. I can certainly work with her myself on the simplistic stuff that they cover at this age. We registered her tonight and I'm not happy. I just didn't get a good feeling at the school. It was all fine, but the reality and dread are overcoming my excitement... 21 to 24 kids in the classroom and Em with all her absences getting lost in the shuffle. There's an alternative school in the area, the exact same distance from our house. The benefit is they are on for nine weeks then off for three weeks... what a great opportunity for 's body to recuperate. They start in late July so you don't have so much of the cold and flu season factoring in. BUT the school did not score near as well (as our regular choice) this past year. Sigh. I guess the decision will have to be what is best for EMILY, even if the school isn't as highly rated? Oh, it's so hard to decide!!!! Thanks again, and thanks to Sandi too. (mom to Kate, born 9/19/02, dairy intolerant; and , age 5, GERD, dairy intolerant -- currently has polysaccharide antibody def, previously had transient IgG, IgA, t-cell & other defs) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2004 Report Share Posted March 24, 2004 Diane - congratulations. Good to know that he has regained his ground. Does the IQ score keep him in special ed or are there other learning disabilities that need addressing? Ursula Thanks Ursula!! There are other learning disabilities to be addressed, while he has gained back in every area he didn't gain back anything in reading/spelling/writing and math. So now instead of being considered mild mentally retarded they are considering him severely learning disabled. The psychologist said that he'll always be in special ed, and he'll have to go all year long until he's done with school, but hopefully he'll finish just a year behind his peers. We have to do the neuropsyche evals once a year now, unless he has some problems before then. Diane, Mom to Takoda, AKA Kody, Di Syndrome, Hypogammaglobulinemia, Seizure Disorder, Asthma, GERD, bowel dysfunction, learning disabled, CAPD, generalized anxiety disorder, and all around really great kid! Also Mom to Arika age 16, Kaila age 13 (asthma), and Sami age 10 (dyslexic). Please visit my website at www.geocities.com/schmidtzoo/SNAK Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.