Guest guest Posted February 20, 2010 Report Share Posted February 20, 2010 Sounds like you need to go to the IDF website and download the paperwork to give to schools. It is very well written and can also be given to the school nurse. Is she still sick a lot or doing fairly well now. I noticed that she was getting her infusions every 4 weeks. My understanding is that Ig have a half life or in other words runs out in about 23 days. I know some people do OK on every 4 weeks but if there are consistent break through infections then one option is to increase the frequency to every 3 weeks. My son crashed the third week prior to his infusions. He is now on SubQ and no longer deals with the fatigue between infusions. I would also consider seriously getting a 504 plan to help accommodate her needs which may be in her case just being out more frequently.My son has an IEP which is OHP or other health impaired designation and it has made the difference for him but.... his illness has to effect his grades or ability to function or learn at school in some way. My son missed 40+ days on average each year and they did NOT like that. He is now homeschooling and it is a better fit for us. He is 14 in the 8th grade. Feel free to contact me directly if I can answer any other questions. BARBIE ________________________________ From: Pat <pat_pnrtransport@...> Sent: Sat, February 20, 2010 5:54:19 PM Subject: Looking for info Hello, I just received a letter from my daughters school about her many days of being absent. Was wondering what and how to explain why she is absent so often. Only has been 7 days so far this school year.(which I don't think is too bad) But they are making a big deal out of it. My daughter is 15 was diagnosed with (hypogammoglobinemi a) last year. She has infusions every 4 weeks. I am new to all of this and am trying to learn as much as I can so it is hard to explain it to others when I'm still learning myself. I Thank you for any help you can give me. To any one that want to write me direct my e-mail address is pat_pnrtransport@ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2010 Report Share Posted February 20, 2010 Sounds like you need to go to the IDF website and download the paperwork to give to schools. It is very well written and can also be given to the school nurse. Is she still sick a lot or doing fairly well now. I noticed that she was getting her infusions every 4 weeks. My understanding is that Ig have a half life or in other words runs out in about 23 days. I know some people do OK on every 4 weeks but if there are consistent break through infections then one option is to increase the frequency to every 3 weeks. My son crashed the third week prior to his infusions. He is now on SubQ and no longer deals with the fatigue between infusions. I would also consider seriously getting a 504 plan to help accommodate her needs which may be in her case just being out more frequently.My son has an IEP which is OHP or other health impaired designation and it has made the difference for him but.... his illness has to effect his grades or ability to function or learn at school in some way. My son missed 40+ days on average each year and they did NOT like that. He is now homeschooling and it is a better fit for us. He is 14 in the 8th grade. Feel free to contact me directly if I can answer any other questions. BARBIE ________________________________ From: Pat <pat_pnrtransport@...> Sent: Sat, February 20, 2010 5:54:19 PM Subject: Looking for info Hello, I just received a letter from my daughters school about her many days of being absent. Was wondering what and how to explain why she is absent so often. Only has been 7 days so far this school year.(which I don't think is too bad) But they are making a big deal out of it. My daughter is 15 was diagnosed with (hypogammoglobinemi a) last year. She has infusions every 4 weeks. I am new to all of this and am trying to learn as much as I can so it is hard to explain it to others when I'm still learning myself. I Thank you for any help you can give me. To any one that want to write me direct my e-mail address is pat_pnrtransport@ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2010 Report Share Posted February 20, 2010 If you do not have the IDF handbook then please contact them and in the handbook there are examples of letters that you can give to your childs school. The IDF also has a sperate handbook for school nurses. I use to hate when we would get these letter for my daughter-but the school district has to send them (as I have been told) so protect yourselves by making sure the school and nurses office is aware of your daughters health issues. Sue Petrelli mom to 18 yr old w CVID From: Pat <pat_pnrtransport@...> Subject: Looking for info Date: Saturday, February 20, 2010, 7:54 PM Â Hello, I just received a letter from my daughters school about her many days of being absent. Was wondering what and how to explain why she is absent so often. Only has been 7 days so far this school year.(which I don't think is too bad) But they are making a big deal out of it. My daughter is 15 was diagnosed with (hypogammoglobinemi a) last year. She has infusions every 4 weeks. I am new to all of this and am trying to learn as much as I can so it is hard to explain it to others when I'm still learning myself. I Thank you for any help you can give me. To any one that want to write me direct my e-mail address is pat_pnrtransport@ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2010 Report Share Posted February 20, 2010 If you do not have the IDF handbook then please contact them and in the handbook there are examples of letters that you can give to your childs school. The IDF also has a sperate handbook for school nurses. I use to hate when we would get these letter for my daughter-but the school district has to send them (as I have been told) so protect yourselves by making sure the school and nurses office is aware of your daughters health issues. Sue Petrelli mom to 18 yr old w CVID From: Pat <pat_pnrtransport@...> Subject: Looking for info Date: Saturday, February 20, 2010, 7:54 PM Â Hello, I just received a letter from my daughters school about her many days of being absent. Was wondering what and how to explain why she is absent so often. Only has been 7 days so far this school year.(which I don't think is too bad) But they are making a big deal out of it. My daughter is 15 was diagnosed with (hypogammoglobinemi a) last year. She has infusions every 4 weeks. I am new to all of this and am trying to learn as much as I can so it is hard to explain it to others when I'm still learning myself. I Thank you for any help you can give me. To any one that want to write me direct my e-mail address is pat_pnrtransport@ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2010 Report Share Posted February 20, 2010 Hi Pat, we've had many struggles with this, even got an advocacy center attorney....now we have teeth in it!   Your daughter needs to get 504 accommodations or an IEP....since she has this diagnosis she is protected under IDEA, Individuals with Diasbalities in Education Act. When her absences are listed as part of the accommodation she needs because of her diagnosis, they have to accept the absences, and provide whatever supports she needs.  We finally have a good IEP, which says my son will be absent often because of illness, infusions, doctors' visits, and not feeling well. His stamina is reduced so his homework or make up work has to be individualized, and less tha other students.  It's all about " levelling the playing field, "  which is what accommodations are.  Look on the website for the IDF....the ID Foundation, they have a great booklet, free, with all of this information.....in fact order a copy to give to the school and you can download it to see what to write in the IEP or the letter regarding the accommodations.  Check out the website for slaw, they also deal a lot with these school issues.  Having immunity problems and frequent illness, is stressful enough! Worrying about school absences should be lessesned.....It always made me so upset, then angry, the way they would act like my child just took off school for the day for fun or something!!  you can call me if you'd like, we have dealt with this until we finally got it right!  Sue  (504) 400-1994  From: Pat <pat_pnrtransport@...> Subject: Looking for info Date: Sunday, February 21, 2010, 1:54 AM  Hello, I just received a letter from my daughters school about her many days of being absent. Was wondering what and how to explain why she is absent so often. Only has been 7 days so far this school year.(which I don't think is too bad) But they are making a big deal out of it. My daughter is 15 was diagnosed with (hypogammoglobinemi a) last year. She has infusions every 4 weeks. I am new to all of this and am trying to learn as much as I can so it is hard to explain it to others when I'm still learning myself. I Thank you for any help you can give me. To any one that want to write me direct my e-mail address is pat_pnrtransport@ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2010 Report Share Posted February 20, 2010 Hi Pat, we've had many struggles with this, even got an advocacy center attorney....now we have teeth in it!   Your daughter needs to get 504 accommodations or an IEP....since she has this diagnosis she is protected under IDEA, Individuals with Diasbalities in Education Act. When her absences are listed as part of the accommodation she needs because of her diagnosis, they have to accept the absences, and provide whatever supports she needs.  We finally have a good IEP, which says my son will be absent often because of illness, infusions, doctors' visits, and not feeling well. His stamina is reduced so his homework or make up work has to be individualized, and less tha other students.  It's all about " levelling the playing field, "  which is what accommodations are.  Look on the website for the IDF....the ID Foundation, they have a great booklet, free, with all of this information.....in fact order a copy to give to the school and you can download it to see what to write in the IEP or the letter regarding the accommodations.  Check out the website for slaw, they also deal a lot with these school issues.  Having immunity problems and frequent illness, is stressful enough! Worrying about school absences should be lessesned.....It always made me so upset, then angry, the way they would act like my child just took off school for the day for fun or something!!  you can call me if you'd like, we have dealt with this until we finally got it right!  Sue  (504) 400-1994  From: Pat <pat_pnrtransport@...> Subject: Looking for info Date: Sunday, February 21, 2010, 1:54 AM  Hello, I just received a letter from my daughters school about her many days of being absent. Was wondering what and how to explain why she is absent so often. Only has been 7 days so far this school year.(which I don't think is too bad) But they are making a big deal out of it. My daughter is 15 was diagnosed with (hypogammoglobinemi a) last year. She has infusions every 4 weeks. I am new to all of this and am trying to learn as much as I can so it is hard to explain it to others when I'm still learning myself. I Thank you for any help you can give me. To any one that want to write me direct my e-mail address is pat_pnrtransport@ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2010 Report Share Posted February 22, 2010 Isnt it aggravating? last yr I kept getting phone calls to ask if I knew that my 13 yr old was " truant again " ? Im like.....she's not truant...shes in bed sleeping bc she is sick...and since I called her in sick this morning, YES, I do know she's not there! " Interestingly, this yr I no longer get the truant notices for her since I got a 504 plan for her. valarie > > We had a lot of problems with the letter from the school about absences. Same explanation that they understood he was going to be sick more often, but they " have to send it out. " We got a 504 plan in place and it has made all of the difference. I still have to call and remind the attendance secretary frequently that his absences are covered by his plan and should be coded medical not " parent excused " , but it always gets taken care of. It seems with the plan in place the absences don't count against the school which at least in our state can affect their funding. My son had 45-50 absences last year and is currently at around 20 for this year. He has been on SCIG since May 2009 so this is still relatively new to us as well. Good luck. I'm happy to give more information if you want it. We just revised his 504 plan last week so I have it here if you want any specific ideas. > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2010 Report Share Posted February 22, 2010 They cant do that....another problem we had was the school forcing my daughter to take exams in classes she already had A's in...only bc of her absences...now with a 504, she hasnt had to take any of them this yr....schools can be so ridiculous. Request a 504 meeting with whoever runs the special services at your school, get letters from all her drs, and they should give you these special accomodations. valarie > > > From: Sievert <sievertlaura@...> > Subject: Looking for info > > Date: Sunday, February 21, 2010, 11:16 AM > > > Â > > > > We had a lot of problems with the letter from the school about absences. Same explanation that they understood he was going to be sick more often, but they " have to send it out. " We got a 504 plan in place and it has made all of the difference. I still have to call and remind the attendance secretary frequently that his absences are covered by his plan and should be coded medical not " parent excused " , but it always gets taken care of. It seems with the plan in place the absences don't count against the school which at least in our state can affect their funding. My son had 45-50 absences last year and is currently at around 20 for this year. He has been on SCIG since May 2009 so this is still relatively new to us as well. Good luck. I'm happy to give more information if you want it. We just revised his 504 plan last week so I have it here if you want any specific ideas. > Â > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2010 Report Share Posted February 22, 2010 Thanks we are working on it. But you watch my school will be a real pain in the A** about it. Pat Accounting Manager PNR Transport & Logistics PH: 607-583-2458 FAX: 607-583-2549 From: osdbmom <osdbmom@...> Subject: Re: Looking for info Date: Monday, February 22, 2010, 9:56 AM  They cant do that....another problem we had was the school forcing my daughter to take exams in classes she already had A's in...only bc of her absences...now with a 504, she hasnt had to take any of them this yr....schools can be so ridiculous. Request a 504 meeting with whoever runs the special services at your school, get letters from all her drs, and they should give you these special accomodations. valarie > > > From: Sievert <sievertlaura@ ...> > Subject: Looking for info > groups (DOT) com > Date: Sunday, February 21, 2010, 11:16 AM > > >  > > > > We had a lot of problems with the letter from the school about absences. Same explanation that they understood he was going to be sick more often, but they " have to send it out. " We got a 504 plan in place and it has made all of the difference. I still have to call and remind the attendance secretary frequently that his absences are covered by his plan and should be coded medical not " parent excused " , but it always gets taken care of. It seems with the plan in place the absences don't count against the school which at least in our state can affect their funding. My son had 45-50 absences last year and is currently at around 20 for this year. He has been on SCIG since May 2009 so this is still relatively new to us as well. Good luck. I'm happy to give more information if you want it. We just revised his 504 plan last week so I have it here if you want any specific ideas. >  > > > Quote Link to comment Share on other sites More sharing options...
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