Guest guest Posted July 12, 2004 Report Share Posted July 12, 2004 Don't discount the prednisone so easily it has made our lives much better. we don't use it for every episode but it works like a ream when we do. We use it for severe episodes and episodes when we have something special going on that we don't want to miss i.e her birthday... Any way my message is there are a lot of us that prednisone has been very helpful to and you really won't know if it will help your child until you try it, keep an open mind any way. Christy Missouri Valley Ia Mom to >>> erindelong2005@... 07/12/04 04:26PM >>> Hi. My daughter is in the process of being diagnosed with . I'm certain that this is what she has. I'm wondering if and when she is diagnosed, if she will be allowed to stay in school during an episode (knowing that this is not a contagious condition.) I'm losing tons of money in day care because they call every 3-4 weeks for me to pick her up due to fever. Then she is out for 3-4 days. I'm hoping I can get something from her doctor that will allow her attend. Oh ya, I'm also soooo frustrated with the frequent use of tylenol. We go through an entire bottle with each episode. I feel like I'm poisoning my child but without it she is miserable. The predisone does not sound any better from what I've read. Thanks, ERIN Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2004 Report Share Posted July 12, 2004 Don't discount the prednisone so easily it has made our lives much better. we don't use it for every episode but it works like a ream when we do. We use it for severe episodes and episodes when we have something special going on that we don't want to miss i.e her birthday... Any way my message is there are a lot of us that prednisone has been very helpful to and you really won't know if it will help your child until you try it, keep an open mind any way. Christy Missouri Valley Ia Mom to >>> erindelong2005@... 07/12/04 04:26PM >>> Hi. My daughter is in the process of being diagnosed with . I'm certain that this is what she has. I'm wondering if and when she is diagnosed, if she will be allowed to stay in school during an episode (knowing that this is not a contagious condition.) I'm losing tons of money in day care because they call every 3-4 weeks for me to pick her up due to fever. Then she is out for 3-4 days. I'm hoping I can get something from her doctor that will allow her attend. Oh ya, I'm also soooo frustrated with the frequent use of tylenol. We go through an entire bottle with each episode. I feel like I'm poisoning my child but without it she is miserable. The predisone does not sound any better from what I've read. Thanks, ERIN Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2004 Report Share Posted July 12, 2004 My daughter was in preschool but in the public school system and she will be starting Kindergarten next month. I have talked to my daughters principal, teachers and school nurse about the missing school problem. Normally you can only miss 17 days of school, however they have told me that won't be a problem. I printed out info on as well as HIDS, FMF and TRAPS since we are still waiting for genetic testing to come back. I would suggest setting up a meeting with them and bringing them the info. Something in writing always seems to help, rather than a " mom's " word unfortunately. However I haven't asked them to let her stay there during the episodes because she's too miserable to stay there, but I just didn't want the days to count against her. Good luck. Tracey Mom to Maddie, age 5 & Brent , age 9 League City, TX On Monday, July 12, 2004, at 04:26 PM, erindelong2005 wrote: > Hi. My daughter is in the process of being diagnosed with . > I'm certain that this is what she has. I'm wondering if and when > she is diagnosed, if she will be allowed to stay in school during an > episode (knowing that this is not a contagious condition.) I'm > losing tons of money in day care because they call every 3-4 weeks > for me to pick her up due to fever. Then she is out for 3-4 days. > I'm hoping I can get something from her doctor that will allow her > attend. > > Oh ya, I'm also soooo frustrated with the frequent use of tylenol. > We go through an entire bottle with each episode. I feel like I'm > poisoning my child but without it she is miserable. The predisone > does not sound any better from what I've read. > Thanks, ERIN > > <image.tiff> > > <image.tiff> > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2004 Report Share Posted July 12, 2004 My daughter was in preschool but in the public school system and she will be starting Kindergarten next month. I have talked to my daughters principal, teachers and school nurse about the missing school problem. Normally you can only miss 17 days of school, however they have told me that won't be a problem. I printed out info on as well as HIDS, FMF and TRAPS since we are still waiting for genetic testing to come back. I would suggest setting up a meeting with them and bringing them the info. Something in writing always seems to help, rather than a " mom's " word unfortunately. However I haven't asked them to let her stay there during the episodes because she's too miserable to stay there, but I just didn't want the days to count against her. Good luck. Tracey Mom to Maddie, age 5 & Brent , age 9 League City, TX On Monday, July 12, 2004, at 04:26 PM, erindelong2005 wrote: > Hi. My daughter is in the process of being diagnosed with . > I'm certain that this is what she has. I'm wondering if and when > she is diagnosed, if she will be allowed to stay in school during an > episode (knowing that this is not a contagious condition.) I'm > losing tons of money in day care because they call every 3-4 weeks > for me to pick her up due to fever. Then she is out for 3-4 days. > I'm hoping I can get something from her doctor that will allow her > attend. > > Oh ya, I'm also soooo frustrated with the frequent use of tylenol. > We go through an entire bottle with each episode. I feel like I'm > poisoning my child but without it she is miserable. The predisone > does not sound any better from what I've read. > Thanks, ERIN > > <image.tiff> > > <image.tiff> > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 2004 Report Share Posted July 13, 2004 Hi , We all understand your frustration. You may already know this, but there is a form of a letter you can modify for your child's school or daycare explaining that it's not contagious,etc. We did it for our son's school and they were great about working with us when he had an episode. Also, you mentioned using lots of Tylenol. Are you using Advil/ibuprofin, as well? Again, we found that Tylenol alone did nothing. Hang in there! Rosemarie Mom to Danny age 10 (fever free since tonsillectomy in May 2002) Denver, CO Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 2004 Report Share Posted July 13, 2004 Hi , We all understand your frustration. You may already know this, but there is a form of a letter you can modify for your child's school or daycare explaining that it's not contagious,etc. We did it for our son's school and they were great about working with us when he had an episode. Also, you mentioned using lots of Tylenol. Are you using Advil/ibuprofin, as well? Again, we found that Tylenol alone did nothing. Hang in there! Rosemarie Mom to Danny age 10 (fever free since tonsillectomy in May 2002) Denver, CO Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 2004 Report Share Posted July 13, 2004 Hi my son did miss a lot of school his first year due to the and he had to due kindergarten over agian this past year but it was different. I had his doctor send info in about to the school. I also got info off of this site and took to the school myself and gave it to the school nurse, his teacher, & principal. We alos had a form from his doctor that gave the school permission to give Motrin if he got a fever while at school. The school also agreed to let Chirs come to school if he felt up to it with a fever as long as it was not over 101. He was also able to stay at school if he got a fever while there and it was not over 101 and he felt like staying at school. That helped a lot. He was however a lot better this year. had the T & A back in April of 2003 and his has gotten a lot better. Before the T & A he would cycle every 21 days with the high fever 100 - 105 and the mouth sores, headache, stomach ache, and some leg pain. Now he does not cycle every 21 days. will go a few months without and . When he does cycle now it so much better his fever is 100 - 103 and will only last a day or two. The mouth sore and not as bad only one or two now. He does not always get a fever now with the mouth sores. He still get the headaches with the mouth sores. He has not had any for the past few months and it been great. has not been on any medication for for the past year. Before we did the T & A was taking Orapred (Prednisone) which did not do much for Chris. So his doctor put on Cimetidine which hepled a lot he was on that until he had the T & A than here was back on Prednisone for a while. Than we stopped every thing to see if the T & A had hepled him. We did have a five month break in the before it came back after the T & A. But like I said it has been a lot better and I thank God for that. I just hope it will stay that way. was able to go to school a lot more this past year he only missed a little school due to . He has been so much happier and more healthly. He now likes to eat more and has put on weight now. He was so small he never wanted to eat because he had those mouth sores so much and it hurt to eat. So jsut talked to your doctor and the school and see what happens. I wish you the best of luck. Sorry this was so long and I hope this will help you in some way. This site has really helped my family and a lot of other fammiles. Hope things get better for you soon. God Bless and prayers! Dawn Colley Mom to (7) & Nikki (3) Chapel Hill, NC Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 2004 Report Share Posted July 13, 2004 Hi my son did miss a lot of school his first year due to the and he had to due kindergarten over agian this past year but it was different. I had his doctor send info in about to the school. I also got info off of this site and took to the school myself and gave it to the school nurse, his teacher, & principal. We alos had a form from his doctor that gave the school permission to give Motrin if he got a fever while at school. The school also agreed to let Chirs come to school if he felt up to it with a fever as long as it was not over 101. He was also able to stay at school if he got a fever while there and it was not over 101 and he felt like staying at school. That helped a lot. He was however a lot better this year. had the T & A back in April of 2003 and his has gotten a lot better. Before the T & A he would cycle every 21 days with the high fever 100 - 105 and the mouth sores, headache, stomach ache, and some leg pain. Now he does not cycle every 21 days. will go a few months without and . When he does cycle now it so much better his fever is 100 - 103 and will only last a day or two. The mouth sore and not as bad only one or two now. He does not always get a fever now with the mouth sores. He still get the headaches with the mouth sores. He has not had any for the past few months and it been great. has not been on any medication for for the past year. Before we did the T & A was taking Orapred (Prednisone) which did not do much for Chris. So his doctor put on Cimetidine which hepled a lot he was on that until he had the T & A than here was back on Prednisone for a while. Than we stopped every thing to see if the T & A had hepled him. We did have a five month break in the before it came back after the T & A. But like I said it has been a lot better and I thank God for that. I just hope it will stay that way. was able to go to school a lot more this past year he only missed a little school due to . He has been so much happier and more healthly. He now likes to eat more and has put on weight now. He was so small he never wanted to eat because he had those mouth sores so much and it hurt to eat. So jsut talked to your doctor and the school and see what happens. I wish you the best of luck. Sorry this was so long and I hope this will help you in some way. This site has really helped my family and a lot of other fammiles. Hope things get better for you soon. God Bless and prayers! Dawn Colley Mom to (7) & Nikki (3) Chapel Hill, NC Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 2004 Report Share Posted July 13, 2004 , Hi, and welcome. My daughter Breana has done this almost since birth. I work as a teacher and my husband also works fulltime. In the beginning when she was under a year I had to miss work due to her being in the hospital a lot. As time continued in her 2nd year I was still missing a week of work every month. I would call my principal and let her know what was going on, she was very irritated with me during this time and I don not blame her its hard when you work with intensive special needs students and your not there! Thank god for the union rallying behind me they even did a fundraiser to help us at one point. Finally after we were seen in Boston and explained to daycare that she was not contagious blah blah blah she was able to stay during her episodes. Yes I still got many calls because we had reached a point were Motrin and Tylenol were no longer working(she was going to over 107 in 30 minutes at this point). But it was a little better(faster reentry to daycare). Then we had no choice but to start Prednisone due to 107.8 fevers with No relief from the Motrin/Tylenol. Since Prednisone while we have Severe side effects she attends unless really really miserable..... I missed 26 days this school year(still high for a teacher) compared to 70 then 50 the first 2 years of Breana's life. I think the fact that we traveled out to NIH also showed my employer that Breana did have a 'true' illness. How old is your daughter? mom to Breana 3.6 and 14 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 2004 Report Share Posted July 13, 2004 , Hi, and welcome. My daughter Breana has done this almost since birth. I work as a teacher and my husband also works fulltime. In the beginning when she was under a year I had to miss work due to her being in the hospital a lot. As time continued in her 2nd year I was still missing a week of work every month. I would call my principal and let her know what was going on, she was very irritated with me during this time and I don not blame her its hard when you work with intensive special needs students and your not there! Thank god for the union rallying behind me they even did a fundraiser to help us at one point. Finally after we were seen in Boston and explained to daycare that she was not contagious blah blah blah she was able to stay during her episodes. Yes I still got many calls because we had reached a point were Motrin and Tylenol were no longer working(she was going to over 107 in 30 minutes at this point). But it was a little better(faster reentry to daycare). Then we had no choice but to start Prednisone due to 107.8 fevers with No relief from the Motrin/Tylenol. Since Prednisone while we have Severe side effects she attends unless really really miserable..... I missed 26 days this school year(still high for a teacher) compared to 70 then 50 the first 2 years of Breana's life. I think the fact that we traveled out to NIH also showed my employer that Breana did have a 'true' illness. How old is your daughter? mom to Breana 3.6 and 14 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2006 Report Share Posted January 31, 2006 , My son Ian has missed 16 days of school so far this school year. He has IVIG every 3 weeks so will miss 6 more days because of that. Ian has also been very ill the past month, so I am sure we have many more days to come. Ian had been doing well since starting IVIG a year ago until the past couple of months. Even though they keep increasing the dose, it doesn't seem to be working. Your school should have given you the option of home / hospital instruction as an option. You may also be able to get them to provide a tutor. The district Ian is in has offered us both, but he does not need them as thankfully he is a 4.0 student even missing the amount of days he does. My son also goes to a very small public school. There are only 124 kids total in grades K - 8th. I think that you would want to see what you as parents feel is best for your son since you know better. I am a teacher, and would never tell parents that they should home school their child. It is a decision that you have to make given the input of the school, your doctor, and your son. Home school works great for some kids, and not as well for others. I know that would not be an option my son would enjoy. Whatever you decision, I wish you well. I hope that your son will get through the rest of the illness months ahead healthy. (mother to Ian - Age 10: CVID, IgA def, IgG Def., pneumococcal antibody deficiency, severeasthma, chronic sinusitis, chronic bronchitis, severe food / drug / and environmental allergies) > > How many days do most of your kids miss of school? My son has missed 25% of the school year so far. We go Friday for a new full workup (his last was a few years ago as he'd been doing so well). He managed to go 1/2 days 3 times last week and one full day yesterday and now is sick again and I don't forsee him going back this week before our hospital trip on Friday (we have to travel there). I feel like he's getting behind. The school thinks I should just homeschool him (i've done this with my daughter up until last year so I know the ins/outs of that). The ped is opposed (not due to health, but " socialization " ). She's just not a fan of HS. > > I don't know what to do at this point. We are going to have to do something as he is going to end up missing 1/2 the year if we aren't careful. I mean, there are still a few more months of the really sick months ahead. > > > Mom to Grace 8 (transient hypogam of infancy, IgA def, Antigen proliferation defect, pneumococcal antibody deficiency, mild asthma, chronic constipation) > Mom to Caelan 6 (IgG, IgM, IgA def, Antigen proliferation defect, pneumococcal antibody def, asthma, Eosinophilic esophagitis, severe food allergy) > Mom to Ian 6/4/05 (GERD, otherwise incredibly healthy so far!) > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2006 Report Share Posted January 31, 2006 That is exactly what I have done with my little guy. I pulled him out last week and will be homeschooling him until I think he can handle the classroom setting again, or he reaches high school whichever comes first. Cassie & wrote: > How many days do most of your kids miss of school? My son has missed > 25% of the school year so far. We go Friday for a new full workup > (his last was a few years ago as he'd been doing so well). He managed > to go 1/2 days 3 times last week and one full day yesterday and now is > sick again and I don't forsee him going back this week before our > hospital trip on Friday (we have to travel there). I feel like he's > getting behind. The school thinks I should just homeschool him (i've > done this with my daughter up until last year so I know the ins/outs > of that). The ped is opposed (not due to health, but > " socialization " ). She's just not a fan of HS. > > I don't know what to do at this point. We are going to have to do > something as he is going to end up missing 1/2 the year if we aren't > careful. I mean, there are still a few more months of the really sick > months ahead. > > > Mom to Grace 8 (transient hypogam of infancy, IgA def, Antigen > proliferation defect, pneumococcal antibody deficiency, mild asthma, > chronic constipation) > Mom to Caelan 6 (IgG, IgM, IgA def, Antigen proliferation defect, > pneumococcal antibody def, asthma, Eosinophilic esophagitis, severe > food allergy) > Mom to Ian 6/4/05 (GERD, otherwise incredibly healthy so far!) > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2006 Report Share Posted January 31, 2006 It's been awhile since I responded to anyone my daughter Breanna is now 12 she is IGG deficient, asthma, ulcers, fatigue syndrome, juvenile arthritis and sick all the time. By the time I took her out of public school I had battle the school board, been reported to child services for education neglect, hired a dozen tutors and fought them holding her back. When we left the public school she had missed 3 years worth of school all put together, she is and was at the time a strong reader her only problem was math, they wanted to keep her back because she was weak in 1 subject or because she had missed so much school. I fought my way through 504 meeting,school psychiatrists and people who just didn't understand out situation because she didn't have something that they understood for anyone and everyone check out Laurelsprings.com Laurel Springs a fully accredited private school. My daughter is still sick but gets a steady education she has a B + average she goes to school on line around her health it is about 1,500.00 a year with great teacher support I can not praise them enough. I went through hell with the public school system I begged them to educate my daughter, I agreed to every test that they wanted to do but because by daughter was not mentally challenged,did not have cancer they sent a social worker to my house and accused me of neglect, it does not get better as they get older. As my daughter became older she understood that she was different and they penalized her for this, I did alot of research even thought of home schooling her at one point. Home schooling was over my head but could not stand the pain that my daughter felt every time she went to school for 3 days and then was out for 2 weeks, the school staff did not help her to fit in they just made the situation worse. I hope your experience is better than mine and my daughters was, I sign her up for ballet and art classes so she socializes and for the first time she loves school Laurie L. DeSouto From: & Date: 01/31/06 21:51:15 Subject: Missing School How many days do most of your kids miss of school? My son has missed 25% of the school year so far. We go Friday for a new full workup (his last was a few years ago as he'd been doing so well). He managed to go 1/2 days 3 times last week and one full day yesterday and now is sick again and I don't forsee him going back this week before our hospital trip on Friday (we have to travel there). I feel like he's getting behind. The school thinks I should just homeschool him (i've done this with my daughter up until last year so I know the ins/outs of that). The ped is opposed (not due to health but " socialization " ). She's just not a fan of HS. I don't know what to do at this point. We are going to have to do something as he is going to end up missing 1/2 the year if we aren't careful. I mean, there are still a few more months of the really sick months ahead. Mom to Grace 8 (transient hypogam of infancy, IgA def, Antigen proliferation defect, pneumococcal antibody deficiency, mild asthma, chronic constipation) Mom to Caelan 6 (IgG, IgM, IgA def, Antigen proliferation defect, pneumococcal antibody def, asthma, Eosinophilic esophagitis, severe food allergy) Mom to Ian 6/4/05 (GERD, otherwise incredibly healthy so far!) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2006 Report Share Posted January 31, 2006 As with all things there are many opinions and experiences with school, home school, 504 plans and IEP's. I may be in the minority here and it sounds like I am however, I believe that public school with the right support can work. Until the 8th grade, it was not unusual for my son to miss 1/3 of the school year. He was on an IEP for many years as he qualified for speech and physical therapy. However, when it came time to switch to a 504 we were still able to secure a tutor when we knew he was going to miss school. Each year his immunologist would write a letter and each year a tutor was assigned to be on call for him should he need one. Keegan eventually ended up taking more difficult classes than the tutor could handle. At that point his teachers just made extra effort to get him the work he needed via email. We went through years where we did indeed have to fight for what was needed. However, once they saw that this kid could and would do the work, life settled down. In fact most teachers became Keegan's biggest advocate. Keegan eventually went on and combined his last two years of high school with his first two years of college. His 504 plan did indeed follow him to college. They even gave him first priority for enrolling in classes to make sure he got a schedule that maximized his energy level. I know that not everyone is blessed to have things work out that well, but it can happen. In working in the school district I have also learned that you can simply tell them with a smile on your face that you understand what they want but this is how it's going to be. We can re-evaluate it again in two months but for now we need to work as a team to ensure the best result for this child then walk away. They think your nuts at first but it works really well! Heck they thought I was nuts before I walked in the room so what's the difference. Keegan through his hard work earned their respect and eventually they even liked me. It stinks to be the ice breaker, but it makes a difference. If you would like to contact me privately to talk about what we had in our 504, I am more than happy to share. Take care, Kris Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2006 Report Share Posted February 1, 2006 Have you a 504 plan in place? Hi, No we do not have a 504 plan. He has an IHCP (individual health care plan) due to his severe food allergies. I tried for a 504 and couldn't even get the person in charge of them to call me back and the school insisted we didn't need one and that we could handle his allergies with his IHCP. That has worked well for the allergies so far, but we never did address his immune def. causing absences b/c he had done so well the past few years. However, this is KG and he had not even attended preschool due to schools not taking him due to his allergies. So some of the illness is to be expected, although his older sister has been exposing him to germs all along from school and he plays with the neighborhood kids who all went to school/preschool. He has been sick the past few years, but not like now where he can't catch a break. He's missed 27 days so far, Friday will be 28 due to traveling to the hospital. I used to HS my daughter, but her personality lends itself to HS and my son's does not really. He's more of a monkey see monkey do type kid. I'll see what happens Friday with the new immuno and pulmo and go from there I guess. I'm not really even getting work sent home for him. Seems crazy to me! Mom to Grace 8 (THI, IgA def, Antigen proliferation defect, pneumococcal antibody deficiency, mild asthma, chronic constipation) Mom to Caelan 6 (IgG, IgM, IgA def, Antigen proliferation defect, pneumococcal antibody def, asthma, Eosinophilic esophagitis, severe food allergy) Mom to Ian 6/4/05 (GERD, otherwise incredibly healthy so far!) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2006 Report Share Posted February 1, 2006 " The ped is opposed (not due to health, but " socialization " ). She's just not a fan of HS. " Some peds docs strongly encourage homeschooling and support the parent's decision to teach their own -- particularly when it is necessary to get health issues under control. I am not exactly sure what was intended by the term socialization but, please know, homeschool networks offer plenty of time for children to associate with other children of all ages, adults, professionals, etc. A high rate of homeschooling parents are credentialed teachers. There have been several messages from parents who are considering homeschooling -- in view of their PIDers health and/or learning needs. Some people have contacted me directly. Below are excerpts from a recent article about homeschooling, for those that want to know a little more. " Why Millions of Children Love Home School " by Gathercole July-August 2005 America's fastest-growing educational movement: homeschooling. Homeschooling is not a fringe movement...in 2001, more than 2 million children were being homeschooled in the US alone, and the number is rising at the astounding rate of 15 to 20 percent per year. a.. In 2000, only 33% of homeschooling parents cited religion as a reason for homeschooling. 50.8% cited a belief that their children could get a better education, 29.8% stated that school offers a poor learning environment, and 11.5% said that their children were not being challenged in school. b.. Homeschooling does not deprive children of proper socialization. Due to the excellent teacher-student ratio that homeschoolers enjoy, and the lack of time-consuming administrative tasks such as attendance taking, busywork, etc., the academic aspects of homeschooling require only a fraction of the time necessary for the same tasks in a conventional school setting, leaving lots of extra time for social activities. c.. College admissions officers now seek out homeschoolers due to their excellent preparation for academic success at college. An article in Stanford Magazine indicates that Stanford has " special interest " in homeschoolers. (mom to 4 y.o., CVID) & <skgcherzberg@...> wrote: How many days do most of your kids miss of school? My son has missed 25% of the school year so far. We go Friday for a new full workup (his last was a few years ago as he'd been doing so well). He managed to go 1/2 days 3 times last week and one full day yesterday and now is sick again and I don't forsee him going back this week before our hospital trip on Friday (we have to travel there). I feel like he's getting behind. The school thinks I should just homeschool him (i've done this with my daughter up until last year so I know the ins/outs of that). The ped is opposed (not due to health, but " socialization " ). She's just not a fan of HS. I don't know what to do at this point. We are going to have to do something as he is going to end up missing 1/2 the year if we aren't careful. I mean, there are still a few more months of the really sick months ahead. Mom to Grace 8 (transient hypogam of infancy, IgA def, Antigen proliferation defect, pneumococcal antibody deficiency, mild asthma, chronic constipation) Mom to Caelan 6 (IgG, IgM, IgA def, Antigen proliferation defect, pneumococcal antibody def, asthma, Eosinophilic esophagitis, severe food allergy) Mom to Ian 6/4/05 (GERD, otherwise incredibly healthy so far!) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2006 Report Share Posted February 1, 2006 for anyone considering home school please check out this web site laurelsprings.com this is a fully accredited private school that offers an excellant alternative I have had great results with my daughter if anyone would like to talk to me about it please feel free to email me directly. Laurie L. DeSouto L.desouto@... -- Re: Missing School " The ped is opposed (not due to health, but " socialization " ). She's just not a fan of HS. " Some peds docs strongly encourage homeschooling and support the parent's decision to teach their own -- particularly when it is necessary to get health issues under control. I am not exactly sure what was intended by the term socialization but, please know, homeschool networks offer plenty of time for children to associate with other children of all ages, adults, professionals, etc. A high rate of homeschooling parents are credentialed teachers. There have been several messages from parents who are considering homeschooling -- in view of their PIDers health and/or learning needs. Some people have contacted me directly. Below are excerpts from a recent article about homeschooling, for those that want to know a little more. " Why Millions of Children Love Home School " by Gathercole July-August 2005 America's fastest-growing educational movement: homeschooling. Homeschooling is not a fringe movement...in 2001, more than 2 million children were being homeschooled in the US alone, and the number is rising at the astounding rate of 15 to 20 percent per year. a.. In 2000, only 33% of homeschooling parents cited religion as a reason for homeschooling. 50.8% cited a belief that their children could get a better education, 29.8% stated that school offers a poor learning environment, and 11.5% said that their children were not being challenged in school. b.. Homeschooling does not deprive children of proper socialization. Due to the excellent teacher-student ratio that homeschoolers enjoy, and the lack of time-consuming administrative tasks such as attendance taking, busywork, etc., the academic aspects of homeschooling require only a fraction of the time necessary for the same tasks in a conventional school setting, leaving lots of extra time for social activities. c.. College admissions officers now seek out homeschoolers due to their excellent preparation for academic success at college. An article in Stanford Magazine indicates that Stanford has " special interest " in homeschoolers. (mom to 4 y.o., CVID) & <skgcherzberg@...> wrote: How many days do most of your kids miss of school? My son has missed 25% of the school year so far. We go Friday for a new full workup (his last was a few years ago as he'd been doing so well). He managed to go 1/2 days 3 times last week and one full day yesterday and now is sick again and I don't forsee him going back this week before our hospital trip on Friday (we have to travel there). I feel like he's getting behind. The school thinks I should just homeschool him (i've done this with my daughter up until last year so I know the ins/outs of that). The ped is opposed (not due to health but " socialization " ). She's just not a fan of HS. I don't know what to do at this point. We are going to have to do something as he is going to end up missing 1/2 the year if we aren't careful. I mean, there are still a few more months of the really sick months ahead. Mom to Grace 8 (transient hypogam of infancy, IgA def, Antigen proliferation defect, pneumococcal antibody deficiency, mild asthma, chronic constipation) Mom to Caelan 6 (IgG, IgM, IgA def, Antigen proliferation defect, pneumococcal antibody def, asthma, Eosinophilic esophagitis, severe food allergy) Mom to Ian 6/4/05 (GERD, otherwise incredibly healthy so far!) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2006 Report Share Posted February 1, 2006 , I'm not the one against HS, it was the ped. She is one who is misinformed and thinks that kids that are HS don't get properly socialized. I HS my daughter for 3 yrs before sending her to public school and she was plenty socialized. I am pro-homeschooling so I am sorry if I offended you by the comment. It was the ped that looks down on HS, not me! Thanks, Mom to Grace 8 (THI, IgA def, Antigen proliferation defect, pneumococcal antibody deficiency, mild asthma, chronic constipation) Mom to Caelan 6 (IgG, IgM, IgA def, Antigen proliferation defect, pneumococcal antibody def, asthma, Eosinophilic esophagitis, severe food allergy) Mom to Ian 6/4/05 (GERD, otherwise incredibly healthy so far!) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2006 Report Share Posted February 1, 2006 no offence taken, I have to say I was leery of home schooling but was forced into it by the school system where I live, I was over whelmed by the thought of teaching my daughter myself and found laurel springs to be a great alternative, I can't praise them enough my daughter is well educated thanks to them. again if anyone is interested check out laurelsprings.com Laurie L. DeSouto L.desouto@... -- Re: Missing School , I'm not the one against HS, it was the ped. She is one who is misinformed and thinks that kids that are HS don't get properly socialized. I HS my daughter for 3 yrs before sending her to public school and she was plenty socialized. I am pro-homeschooling so I am sorry if I offended you by the comment. It was the ped that looks down on HS, not me! Thanks, Mom to Grace 8 (THI, IgA def, Antigen proliferation defect, pneumococcal antibody deficiency, mild asthma, chronic constipation) Mom to Caelan 6 (IgG, IgM, IgA def, Antigen proliferation defect, pneumococcal antibody def, asthma, Eosinophilic esophagitis, severe food allergy) Mom to Ian 6/4/05 (GERD, otherwise incredibly healthy so far!) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2006 Report Share Posted February 1, 2006 Hi, . You are so thoughtful to write. The real emotions behind the message are often lost in emails -- especially when we are rushed with children pulling at us. Please know, that you did NOT offend me at all. <big hug>. = ) I should be the one apologizing if I made you feel uncomfortable! Also, I am not offended by what your doc said -- but it is aggravating when docs feel entitled to comment on topics that are outside of their scope of practice. I am a dietitian and am constantly floored by the undereducation of nutrition among docs. At the same time, many have a sense of entitlement to give clients incoherent nutrition advice. This was the topic of my dissertation. Getting them to stay within their scope of practice is sometimes like trying to teach opinionated in-laws to stop giving advice about a PID pumpkin. All this to say that I believe we have so much to gain from learning from eachother. I would never want emotions, or perceived emotion, to get in the way of that! We are all here to help our children. I appreciate your writing to me. It gave me a chance to let you know that I did not take your comment out of context. I completely agree with what Dale said, " I don't believe there is only 1 right way " with regard to homeschooling. Blessings that Ian stays healthy! (mom to 4 y.o., CVID) & <skgcherzberg@...> wrote: , I'm not the one against HS, it was the ped. She is one who is misinformed and thinks that kids that are HS don't get properly socialized. I HS my daughter for 3 yrs before sending her to public school and she was plenty socialized. I am pro-homeschooling so I am sorry if I offended you by the comment. It was the ped that looks down on HS, not me! Thanks, Mom to Grace 8 (THI, IgA def, Antigen proliferation defect, pneumococcal antibody deficiency, mild asthma, chronic constipation) Mom to Caelan 6 (IgG, IgM, IgA def, Antigen proliferation defect, pneumococcal antibody def, asthma, Eosinophilic esophagitis, severe food allergy) Mom to Ian 6/4/05 (GERD, otherwise incredibly healthy so far!) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2006 Report Share Posted February 2, 2006 Hi , missed from 45-90 days each year from 1st to 4th grade, we pulled her out of school in " Feb of last year (4th grade) and the school sends the tutors to the house, she gets 5 hours a week, has a teacher and a classroom at the school, she has been in for 2 science labs but today the nurse called and said to keep her away indefinitely because they have so much illness in the school right now. It hasn't always been easy, but is working well now. For socialization she has friends over when possible, is joining 4H ( had been in girl Scouts), plays soccer in spring and summer and shows her Miniature Horses. It has been tough for her as she loves to be around her peers but as she is feeling so much better she understands it has to be this way for now. She does have a 504 plan and it is working. mom to - CVID, asthma, GERD Missing School How many days do most of your kids miss of school? My son has missed 25% of the school year so far. We go Friday for a new full workup (his last was a few years ago as he'd been doing so well). He managed to go 1/2 days 3 times last week and one full day yesterday and now is sick again and I don't forsee him going back this week before our hospital trip on Friday (we have to travel there). I feel like he's getting behind. The school thinks I should just homeschool him (i've done this with my daughter up until last year so I know the ins/outs of that). The ped is opposed (not due to health, but " socialization " ). She's just not a fan of HS. I don't know what to do at this point. We are going to have to do something as he is going to end up missing 1/2 the year if we aren't careful. I mean, there are still a few more months of the really sick months ahead. Mom to Grace 8 (transient hypogam of infancy, IgA def, Antigen proliferation defect, pneumococcal antibody deficiency, mild asthma, chronic constipation) Mom to Caelan 6 (IgG, IgM, IgA def, Antigen proliferation defect, pneumococcal antibody def, asthma, Eosinophilic esophagitis, severe food allergy) Mom to Ian 6/4/05 (GERD, otherwise incredibly healthy so far!) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2006 Report Share Posted March 23, 2006 , Luckily the prednisone gets Evan back on his feet quickly, despite some mood swings. However, I did modify the file posted in this group. If you search in the files you will find an example of a plan to give to your school. I modified it to fit Evan's profile and printed out some of the articles explaining , so that they know it is not contagious. I spoke with the school nurse and the teacher before Evan even started school and the school nurse researched it herself. If Evan spikes a fever in school they have Ibuprofen on hand to give him, and as long as it is an episode, he is allowed to attend school because it is not contagious. Evan really functions fine until his fever gets over 103. He usually has 1 week to make up his homework, and he goes to the school nurse if he feels " moody " on the prednisone. At his age he still has trouble controlling his mood swings on prednisone. My gosh, I have been on it before, and it makes adults moody - these poor kids. Anyway - I hope this helps you. My thoughts and prayers are with everyone, -Tara Mom to Evan age 5 and age 8 Connecticut > > Hi all, > I'm wondering how those of you with school age kids have handled missed school. Have > any of you set up special plans with the school? And how much school are your kids > missing? My daughter has had 34 sick days this school year, but only 23 of them fell on > school days. She's in preschool and will start kindergarten next fall. > > Thanks for you input. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2006 Report Share Posted March 23, 2006 and Tara, You should consider leaving one dose of Prednisone at school with the nurse. Just make sure the nurse knows she is not to administer it before talking to you. was always able to identify a fever compared to any other type of illness. Also for your child's sake.....please tell the teacher to treat and discuss with them in private. No child wants to stand out as being different. Even though all 's teachers since preschool (8th grade now) knew of his , they knew not to discuss it with him in front of his friends. had told only his closest long term friends of . You don't want you child to be left our or singled out because adults don't understand or are afraid no matter what you say about it not be contagious. even travels with a dose of and a thermometer in his bag when he spends the night at a friend or goes away to basketball camp in the summer. Please help your children to lead normal lives even though we as parents worry so much for them. Dean Father of (14 1/2) Winter Park , FL Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2006 Report Share Posted March 23, 2006 Hello My son is in 6th grade and this year so far he has missed 22 days(school dayswhen in section)I havent made a plan with them for him they all know what is going on so they understand and have been very wonderful to him. It is very frustrating on everyone but I think the kids the most. I have been stressing he would be held back but they tell me since all of this is going on that he will be fine. Sacora mom of Nicolas 12 letsvt <lisa@...> wrote: Hi all, I'm wondering how those of you with school age kids have handled missed school. Have any of you set up special plans with the school? And how much school are your kids missing? My daughter has had 34 sick days this school year, but only 23 of them fell on school days. She's in preschool and will start kindergarten next fall. Thanks for you input. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2006 Report Share Posted March 24, 2006 I read the many posts of how often our children are missing school, and want to recommend that you all come up with a Section 504 plan for your child. This Section 504 plan states exactly what a Teacher is to expect from your child's illness, as well as to inform all Teachers and staff that come into contact with your child. At no time does any Teacher have a right to discuss your child's illness in front of other students. They really need to respect your and your child's wishes, even if you want them to keep it all confidential. Many children get upset that others know they are sickly ... for example, my daughter Amber refuses to use her Albuterol inhaler in front of other students because a child had actually made fun of her two years ago when she needed it during class ... after that happened Amber felt it necessary that her Teachers talk to the class about asthma to make sure that no one picks on her again. We all know how harsh other kids can be. Anyways, you will need to contact your School District about setting up a Section 504 plan and then have your Doctor send a letter or form stating that your child has the particular illness. You can set up the Plan to tell Teachers what to expect, what to do in case something occurs in school, as well as should your child miss more than like two days in a row that they provide a Teacher to come to your home to get your child caught up ... and the list goes on. It also informs the school that your child does indeed have this particular chronic illness ... so your school doesn't report you for your child missing so many days of school, etc. This Plan is for your child's benefit. Anyways, I thought I would mention this to all of you because I didn't become aware of it until about a year ago and now we will be setting one up for when Mason begins kindergarten this coming Fall. Take care. Heidi Quote Link to comment Share on other sites More sharing options...
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