Guest guest Posted October 25, 2000 Report Share Posted October 25, 2000 In a message dated 10/25/00 5:19:11 AM Pacific Daylight Time, pandl@... writes: << Anybody have low white blood cell count??(Neutropenia) Could be a Tegretol thing, but amazingly Louis's tegretol level is subtherapeutic......Doesn't compute. rosemary. ----------------------- H >> Rosemary, I just started taking tegretol and haven't had any labs taken yet. But come to think of it the last time I did have labs done before taking this med the Doc was puzzled as to why my white cell count was low? I don't know what the connection is? Maybe there is one? Lori Jo Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2000 Report Share Posted October 25, 2000 In a message dated 10/25/00 5:19:11 AM Pacific Daylight Time, pandl@... writes: << Anybody have low white blood cell count??(Neutropenia) Could be a Tegretol thing, but amazingly Louis's tegretol level is subtherapeutic......Doesn't compute. rosemary. ----------------------- H >> Rosemary, I just started taking tegretol and haven't had any labs taken yet. But come to think of it the last time I did have labs done before taking this med the Doc was puzzled as to why my white cell count was low? I don't know what the connection is? Maybe there is one? Lori Jo Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2000 Report Share Posted October 26, 2000 Hi Vicki, Every day I witness your thoughtful posts and concerns for others. You seem to share your pain and experiences mostly when it helps others . Have you considered some of those new drugs to shrink or halt tumor growth. The Sugen one for example, which is in trial. I always believe in asking these people to be included if you think it would be beneficial.... What has your search of options revealed? Yes, I think Louis is very sensitive to drugs. We are certainly getting into some of the more rare side effects. Thank you rosemary on 26/10/00 3:55 PM, vjpcook@... at vjpcook@... wrote: > Rosemary, > As you probably already know the tegretol can have a low white count side > effect so Anne's neurologist just told me. Perhaps he is more sensitive to > the meds that the tested average. Vicki > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2000 Report Share Posted October 26, 2000 Hi Vicki, Every day I witness your thoughtful posts and concerns for others. You seem to share your pain and experiences mostly when it helps others . Have you considered some of those new drugs to shrink or halt tumor growth. The Sugen one for example, which is in trial. I always believe in asking these people to be included if you think it would be beneficial.... What has your search of options revealed? Yes, I think Louis is very sensitive to drugs. We are certainly getting into some of the more rare side effects. Thank you rosemary on 26/10/00 3:55 PM, vjpcook@... at vjpcook@... wrote: > Rosemary, > As you probably already know the tegretol can have a low white count side > effect so Anne's neurologist just told me. Perhaps he is more sensitive to > the meds that the tested average. Vicki > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2000 Report Share Posted October 26, 2000 Hi Vicki, Every day I witness your thoughtful posts and concerns for others. You seem to share your pain and experiences mostly when it helps others . Have you considered some of those new drugs to shrink or halt tumor growth. The Sugen one for example, which is in trial. I always believe in asking these people to be included if you think it would be beneficial.... What has your search of options revealed? Yes, I think Louis is very sensitive to drugs. We are certainly getting into some of the more rare side effects. Thank you rosemary on 26/10/00 3:55 PM, vjpcook@... at vjpcook@... wrote: > Rosemary, > As you probably already know the tegretol can have a low white count side > effect so Anne's neurologist just told me. Perhaps he is more sensitive to > the meds that the tested average. Vicki > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2000 Report Share Posted October 26, 2000 Rosemary, Thanks for the Supen info. I will e-mail Anne's neurologist right away. So far I think Thalidomide is the winner but we've not made a firm decision. There isn't much time so we must firm this up. It is so tough to have this diagnosis for our children. I empathize with you because I recall how my head was reeling and nobody at time could even spell neurofibromatosis. We've come a long way and there is a long way to go. somehow the gratitude needs to take precedence in our thinking or we could be devastated. When I read the posts of some of our more eloquent writers, I am in awe. But I am thankful to be among all of this Crew. Give Louis a hug from a stranger who feels like I know him. Vicki Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2000 Report Share Posted October 26, 2000 Rosemary, Thanks for the Supen info. I will e-mail Anne's neurologist right away. So far I think Thalidomide is the winner but we've not made a firm decision. There isn't much time so we must firm this up. It is so tough to have this diagnosis for our children. I empathize with you because I recall how my head was reeling and nobody at time could even spell neurofibromatosis. We've come a long way and there is a long way to go. somehow the gratitude needs to take precedence in our thinking or we could be devastated. When I read the posts of some of our more eloquent writers, I am in awe. But I am thankful to be among all of this Crew. Give Louis a hug from a stranger who feels like I know him. Vicki Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2000 Report Share Posted October 26, 2000 Rosemary, Thanks for the Supen info. I will e-mail Anne's neurologist right away. So far I think Thalidomide is the winner but we've not made a firm decision. There isn't much time so we must firm this up. It is so tough to have this diagnosis for our children. I empathize with you because I recall how my head was reeling and nobody at time could even spell neurofibromatosis. We've come a long way and there is a long way to go. somehow the gratitude needs to take precedence in our thinking or we could be devastated. When I read the posts of some of our more eloquent writers, I am in awe. But I am thankful to be among all of this Crew. Give Louis a hug from a stranger who feels like I know him. Vicki Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2000 Report Share Posted October 26, 2000 Vicki Since joining the crew, I have classed you among the group of " eloquent writers " , knowing what to say, and at the right time. Always nice to read your messages. Thankyou. ine Re: Neutropenia > Rosemary, > Thanks for the Supen info. I will e-mail Anne's neurologist right away. So > far I think Thalidomide is the winner but we've not made a firm decision. > There isn't much time so we must firm this up. It is so tough to have this > diagnosis for our children. I empathize with you because I recall how my > head was reeling and nobody at time could even spell neurofibromatosis. > We've come a long way and there is a long way to go. somehow the gratitude > needs to take precedence in our thinking or we could be devastated. When I > read the posts of some of our more eloquent writers, I am in awe. But I am > thankful to be among all of this Crew. Give Louis a hug from a stranger > who feels like I know him. Vicki > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2000 Report Share Posted October 26, 2000 Vicki Since joining the crew, I have classed you among the group of " eloquent writers " , knowing what to say, and at the right time. Always nice to read your messages. Thankyou. ine Re: Neutropenia > Rosemary, > Thanks for the Supen info. I will e-mail Anne's neurologist right away. So > far I think Thalidomide is the winner but we've not made a firm decision. > There isn't much time so we must firm this up. It is so tough to have this > diagnosis for our children. I empathize with you because I recall how my > head was reeling and nobody at time could even spell neurofibromatosis. > We've come a long way and there is a long way to go. somehow the gratitude > needs to take precedence in our thinking or we could be devastated. When I > read the posts of some of our more eloquent writers, I am in awe. But I am > thankful to be among all of this Crew. Give Louis a hug from a stranger > who feels like I know him. Vicki > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2008 Report Share Posted February 23, 2008 My son was just diagnosed with Neutropenia Anyone else know about this immune disorder ? I am looking for some help on how to work on his immune system with a more natural and biomedical approach. Could use any help or suggestions. Thanks so much From: sList [mailto:sList ] Sent: Saturday, February 23, 2008 8:23 AM To: sList Subject: Digest Number 3060 's List Messages In This Digest (11 Messages) 1. ASA Bowling Event - Broward From: Karp 2. Transition Workshop - Broward From: Karp 3a. Re: FDOE- Parental Notification of School Choice Options From: Karp 4a. Re: Broward: Social Skills Groups - Children diagnosed w/autism - PD From: idajkessler 4b. Re: Broward: Social Skills Groups - Children diagnosed w/autism - PD From: Steinman 5a. Re: Broward: Berard AIT Spring Break Sessions From: JodiNeuhof@... 6a. Re: Just thought I would Post this RE Adam BB9 From: Ruderman 7. Please call Big " Retards " Brother Advertisers Today and Ask them to From: Gilmore 8. Autism Resolution Reading before Broward School Board From: Karp 9. 10% Density Rule: Please read this and write the Governor! From: Karp 10. Sailing for Disabled Children and Adults in ville in March From: slist@... View All Topics | Create New Topic Messages 1. ASA Bowling Event - Broward Posted by: " Karp " deniseslist@... deniseslist Fri Feb 22, 2008 9:36 am (PST) Shhoaglund@... wrote: Hi everyone.... A reminder about the upcoming Family Bowling Event on March 2. The proceeds from this fundraiser will help with the expenses of keeping our Chapter going..... monthly support group meetings, general meetings with special presenters, disbursal of autism awareness information to medical professionals, parents and the community as a whole.... among a host of other things. Please come out and support this day and enjoy a day with your family. We will have plenty of assistance there, to help out in any way needed, so everyone can have a great day. See you there! ASA/Broward Chapter Family Bowling/Fundraiser Event When: March 2, 1:00-2:30 PM Where: Brunswick Margate Bowling Lanes 2020 N State Road 7, Margate, Fl Cost: $13.00 per bowler (includes raffle ticket and lunch) (Kids do not have to wear bowling shoes, come with rubber soled shoes) Price includes bowling, 2 slices of pizza or hotdog & a soda This is your opportunity to have a great time with your family while supporting a fundraising effort of the Broward Autism Society. It is imperative that we raise funds in order to continue offering scholarships to gymnastics and summer camp programs for our children and adults with autism, as well as continuing to bring monthly speakers and autism awareness events to our community. Your support is extremely appreciated! For tickets: Call ASA at or email at info@... --------------------------------- Delicious ideas to please the pickiest eaters. Watch the video on AOL Living. --------------------------------- Looking for last minute shopping deals? Find them fast with Yahoo! Search. Back to top Reply to sender | Reply to group | Reply via web post Messages in this topic (1) 2. Transition Workshop - Broward Posted by: " Karp " deniseslist@... deniseslist Fri Feb 22, 2008 9:36 am (PST) Shhoaglund@... wrote: Transition Workshop for Parents Sponsored by: Broward Autism Society of America Gold Coast Down Syndrome United Cerebral Palsy No matter the age of your child with a disability, this training holds vitally important information. Come to this very informative meeting to learn more about how to help your child/student find their passion, and help them create a meaningful plan for the future that embraces their strengths. March 13, 2008 (Thursday Night) 7:00-9:00 PM ARC Broward 10250 NW 53 St, Sunrise, FL (South of Commercial Blvd, west of Nob Hill Road) Presenter: Louis Ruccolo, Transition Specialist Topic will include: · The Transition IEP · Self Determination – Advocating for your needs · Parent/Student/Stakeholder involvement in the transition process · Agency linkages · Community Involvement · Employment · Update on transition projects and partnerships --------------------------------- Delicious ideas to please the pickiest eaters. Watch the video on AOL Living. --------------------------------- Looking for last minute shopping deals? Find them fast with Yahoo! Search. Back to top Reply to sender | Reply to group | Reply via web post Messages in this topic (1) 3a. Re: FDOE- Parental Notification of School Choice Options Posted by: " Karp " deniseslist@... deniseslist Fri Feb 22, 2008 9:36 am (PST) , try this https://www.floridaschoolchoice.org/district/files/School_Choice_Options.pdf Regards, cynthia leverock wrote: Hi! I am having problems opening this attachment...can you please send it as " inline " text. Many thanks, Karp wrote: FDOE wrote: The Department of Education has issued the following memorandum regarding the Parental Notification of School Choice Options. The memorandum may be viewed at: http://info.fldoe.org/docushare/dsweb/Get/Document-4876/pnsco08.pdf ; http://info.fldoe.org/docushare/dsweb/Get/Document-4877/pnsco08a.pdf; http://info.fldoe.org/docushare/dsweb/Get/Document-4878/pnsco08b.pdf; http://info.fldoe.org/docushare/dsweb/Get/Document-4879/pnsco08c.pdf; http://info.fldoe.org/docushare/dsweb/Get/Document-4880/pnsco08d.pdf Please do not reply to this message. If you have questions regarding the content of this message, please contact: tera.quillen@... Sent to: K12 ESE Exceptional Student Education K12 McKay Scholarships PDF files require Acrobat Reader. If you experience problems opening an attachment, try rebooting the system or download the latest version of Acrobat Reader. Get a free copy at: http://www.adobe.com/products/acrobat/readstep.html You have received this message because you subscribed to a ListServe with the Florida Department of Education. If you wish to unsubscribe or modify your profile go to: http://data.fldoe.org/communications/ --------------------------------- Never miss a thing. Make Yahoo your homepage. --------------------------------- Never miss a thing. Make Yahoo your homepage. --------------------------------- Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Back to top Reply to sender | Reply to group | Reply via web post Messages in this topic (3) 4a. Re: Broward: Social Skills Groups - Children diagnosed w/autism - PD Posted by: " idajkessler " idajkessler@... idajkessler Fri Feb 22, 2008 9:36 am (PST) --- In sList , " suegileo " wrote: > > Children's Center for Development & Behavior is now offering weekday > and Saturday social skills group. > > Contact Sue at X212 for more information or visit our > website at www.childpsych.org > Any idea on the cost? Back to top Reply to sender | Reply to group | Reply via web post Messages in this topic (3) 4b. Re: Broward: Social Skills Groups - Children diagnosed w/autism - PD Posted by: " Steinman " sandrasteinman@... steinmans Fri Feb 22, 2008 10:32 am (PST) THIS PLACE WOULD ONLY TAKE CHILDREN WITH VERBAL SKILLS, MY SON DID NOT APROVED BECAUSE HE IS NOT VERBAL AND THE COST IS ABOUT $80.00 AN HR _____ From: sList [mailto:sList ] On Behalf Of idajkessler Sent: Friday, February 22, 2008 7:30 AM To: sList Subject: Re: Broward: Social Skills Groups - Children diagnosed w/autism - PDD Dear Advocates, I just called the governor's office. Comments should be sent to him as well as to Pam Kyllonen and to the link: https://www.flrules.org/Gateway/View_notice.asp?id=5211536 E-mail: charlie.crist@... Attention: Citizens Committee. His Fax is: . Address: PL 05 Capitol 400 S. Monroe St. Tallahassee FL, 32399-0001 We need FLOODS of letters. See below for further direction of comments:: Please note a correction to Pam Kyllonen's e-mail address: Should be: __________________________________________________________ Dear FCC Legislative Committee and Members, AHCA will be holding a hearing on March 3, 2008 in Tallahassee to incorporate the revised Medicaid DD Waiver Services Coverage and Limitations Handbook into a new Administratibe Code. 59G-13.083. The revised version is intended to delete " obsolete " language " from the Handbook. However, the new version of the Handbook will STILL retain the obsolete 10% Density Rule language: The homes of individuals receiving supported living services shall account for no more than 10% of the housing in the smallest identifiable geographical area in which homes are located, which may be a city block, subdivision, neighborhood, apartment complex, or mobile home park. The individuals' homes shall be scattered, noncntiguous and dispersed throughout that area. The Density Rule needs to be deleted from the Handbook before the Handbook is incorporated by reference into the Florida Administratie Code 59G- 13.083. We recommend that the F.A.C. 59G-13.083 not be adopted until such time as the Handbook is revised to remove the Density Rule. Please take a minute to object to this discriminatory rule which remains in the Handbook with the knowlege and support of APD staff and urge the legislators NOT to adopt 59G-13.083 at this time. My comment below will explain further. The following Link will take you to the Florida Administrative Weekly Site which has a " Make Comment " Section. Click on it to make your comments. https://www.flrules.org/Gateway/View_notice.asp?id=5211536 You can also call Pam Kyllonen at AHCA to state your objection to retaining the Density Rule in the revised Handbook: or e-mail: Kyllonep@... Please also see attachments. My Comment follows: __________________________________________________________ If the effect of Florida Administrative Code 59G-13.083 would be to delete obsolete language from the revised Florida Medicaid Developmental Disability Waiver Service Coverage and Limitations Handbook, it would certainly appear that the 10% Density Rule which appears verbatim in the Handbook under " Supported Living Coaching -- Selection of Housing, " pg. 2-108, should have been deleted as well. The Density Rule became obsolete when F.A.C. 65B-11.005 was amended in 2003 to remove the Density Rule as a requirement for Supported Living. Yet, administrators of APD state that they have no intention of deleting it from the Handbook, pointing out that the Density Rule has been in the Handbook since 1995! By what authority has the author of the Handbook the right to retain an obsolete rule? F.A.C 65G-5.004 which replaced 65B-11 also makes absolutely NO reference to it? Additionally, The Density Rule establishes a quota and in our opinion is a violation of civil rights and the Americans with Disabilities Fair Housing Act. I understand from Pam Kyllonen at AHCA, who is responsible for the content of the Handbook, that the Density Rule language was not deleted from the Handbook because of an oversight. Consequently, it needs to be deleted from the Handbook before it becomes incorporated into law. Lila Klausman, Pres, Parents Planning Programs (PPP), Inc. 356 Las Olas Drive Melbourne Beach, FL 32951 e-mail: eklausman@... --------------------------------- Never miss a thing. Make Yahoo your homepage. Back to top Reply to sender | Reply to group | Reply via web post Messages in this topic (1) 10. Sailing for Disabled Children and Adults in ville in March Posted by: " slist@... " slist@... Fri Feb 22, 2008 1:37 pm (PST) (http://www.heartofsailing.org/default.asp) _Heart of Sailing_ (http://www.heartofsailing.org/regional27.asp) introduces sailing to children and adults with developmental disabilities as a form of education and recreational therapy. Sail With Us, March 15th & 16th ville, Florida _Schedule for 2008_ (http://www.heartofsailing.org/regional27.asp) Daysails Provided by Roach aboard 'Grace' his 44´ CSY Cutter Rigged Sailboat **************Ideas to please picky eaters. Watch video on AOL Living. (http://living.aol.com/video/how-to-please-your-picky-eater/rachel-campos-duffy/ 2050827?NCID=aolcmp00300000002598) Back to top Reply to sender | Reply to group | Reply via web post Messages in this topic (1) Recent Activity · 8 New Members Visit Your Group Meditation and Lovingkindness A Yahoo! Group to share and learn. Yahoo! Health Asthma Triggers How you can identify them. Cat Groups on Yahoo! Groups discuss everything related to cats. Need to Reply? 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