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The principal and vice principal of my son's school have been somewhat helpful in my son's condition, he misses a lot of school, but they worked on getting something fixed out so I don't have to get a doctor's excuse everytime he is ill, this helps me with having to deal with all the phone call and doctor's excuses. My son has a rare genetic disorder called Hyper Igd and periodic fever syndrome.
Hello.
I just wanted to share this link with you of a another alternative for schooling. If you ever want to chat your are welcome to contact me.
Have a great week.
Darlene
What alternative? Home schooling?
Excuse me, I was only showing you there is more than home schooling. there is something called Virtual Academy. Where you have meet up with parents and students. But you know what I am sorry.
never mind. Take Care
Consider having your son's medically related absences excused in writing under his IEP or 504 Plan accomodations. My daughter needs to be excused periodically for medical appointments and procedures several times a month for all or part of the day. I've tried to minimize her absences from school, but often it is just not possible. Other times, she may be sick at home or in the hospital for many days. Every 3 weeks she gets Immune Gammuglobin IV infusions at home and must leave school 30 minutes early - also covered as an excused absence. Although my daughter has some learning difficulities, we chose to make her "health disability" her primary disability on her IEP. Now, when she returns from school, I simply note whether or not this is an excused absence according to her IEP and it is recorded appropriately on her record.
It may also be beneficial to you to develop a Health Care Plan with school personnel so that your son's potential health care needs are clearly understood by relevant school personnel.
Thank you, all of this is in process, my son was just diagnosed and we have a very slow school system here, not really a good one to brag on, but it helps that the Vice Principal is a friend of mine and we live in a small community, where everybody knows your name, if you know what I mean. Most people know he has had problems over the years, they are just coming to find out about his condition, he really only misses 3 to 4 days out of a given month, his disorder is periodic, and he is well in between, I condsider that a blessing, also he struggles in school, but he is passing, Thank you for all of the comments you gave me about your child, that was very nice of you and helpful. I have looked into all of these, and I am in the process of taking care of that.
I was just reading your comment and I am going through the exact thing right now with my daughter. She is 8 years old and we have been battling her fevers and sickness since birth. Riley Hospital just called today and confirmed a positive test result for the rare genetic disorder Hyper Igd. My concern with school is if you know if they are actually contagious when they have an episode of fever? My daughter has already missed over 20 days this year and I had to get written proof from doctor etc. I think I need to try to work something out at school as well.
We just had the doctor to write a letter explaining, and then when he gets sick with the fevers, I send a letter telling if it is Hyper Igd or something else. This was by recomendation of the school, talk with the principal or vice principal or dean of students, to ask what would be good for them. They will get with the board and come up with some kind of solution.
What I did was state in the IEP that my son has several medical conditions and will miss alot of school. I also would suggest the doctor writitng a note to your principal. I had to go through alot of hard times before we did this, we live in a city that has tough truancy laws. I hope this helps, If not I wish the best for your family.
Melissa
Hi. I think my son may have this and he has been seen by several Ped Gastro Doctors. They really have no idea what he has. They conclude maybe its IBS. None of the medicatiohn prescribed have brought any pain relief for his stomache pain.
Thank you,
Vicki
Schools MUST be helpful when you have a sick child. Our local high school ended up paying for a mail order correspondence program called American School so my daughter could get all the credits she needed to graduate. It wasn't a home schooled program because the school was still the one that provided teachers. For those of you that do home school or are considering it though it is a good program. The school sent a teacher to our home to help with home work, give test and also exams. Luckily my daughter had all ready completed all the required classes to graduate but she just needed a handful of credits to finish up her last year and a half of high school. The problem with sending home regular class assignments with her is that a lot of the time in high school the assignments are designed around classroom discussions and participation. The teachers are required to make up assignments for sick or disabled kids so that they learn the same material but a handful of the teachers were not so willing to cooperate. I could have sued because this is a violation of the "NO CHILD LEFT BEHIND ACT" but I am not sue happy, the money goes to her health care and most importantly because they came up with a program that worked for all of us. I was totally satisfied in the end but it took a while to get there. I even had a few teachers that volunteered to come to our house once a week to make sure that my daughter understood the assignments that were given. My daughter was given no assignments dates and could work at her own pace because as you well know when you have a sick, disabled or child recovering from repeated surgeries this is sometimes impossible.
Also know that if your child has problems carrying around books from class to class the school is required to supply two or more books for each child. One to keep at home and one to keep in the classroom. If your child has problems getting to each classroom without being tardy they must allow extra time for your child. There are so many things that your school system can do to make getting an education available to kids that would otherwise have a hard time doing so. Do not give up and schedule regular appointments with school advisor's to write up a plan to help your child. Also be educated yourself to know what the schools must provide
For those who are unaware of Hyper-IgD.
Hyper-IgD syndrome is a rare autosomal recessive disorder in which recurring attacks of chills and fever begin during the first year of life. Episodes usually last 4 to 6 days and may be triggered by physiologic stress, such as vaccination or minor trauma.
Hyper-IgD syndrome clusters in children is caused by mutations in the gene coding mevalonate kinase, an enzyme important for cholesterol synthesis. Reduction in the synthesis of anti-inflammatory isoprenylated proteins may account for the clinical syndrome.
In addition to chills and fever, patients may have abdominal pain, vomiting or diarrhea, headache, and arthralgias. Signs include cervical lymphadenopathy, splenomegaly, arthritis, skin lesions (maculopapular rash, petechiae, or purpura), and orogenital aphthous ulcers.
There are no proven treatments to prevent attacks. Patients can expect to have recurrent bouts of fever throughout their life, although episodes tend to become less frequent after adolescence.
And those who have been talking about the homeschooling, this new phenomena is emerging fast but is not favorite for many of the people.
I believe that distance learning or self study must be given to the grown ups and for the higher education but in such cases (like discussed above) homeschooling, virtual schools, online schools or communities are viable options.
They provide flexibility of studying and ease for the students/children to study according to their own will and with their own schedule.
My son has been home bound tutored for the past 4 to 5 months and is doing great, no outbreaks with fever or anything. We are going to try school and homebound off and on if the county will continue to pay for it. If not homeschooled sounds more an option. I would chance him being well, as to going to public school and have all the headaches and stress we had from missing so much.
I totally agree with what austin said. Distance learning is a great opportunity for special children and adults or children who has health related issues. The latest information technology has made online education as easy to access as computer or internet connection. For promotion of successful collaboration and learning for all students, a completely interactive classroom experience through instant access to instructionally rich content and very natural, easy-to-use, instructional tools are being provided.
Thank you Annia for acknowledging my point. And yes, you got my point.
The trends in distance learning programs is continuously showing an upward trend. The thing is we always feel reluctant to new developments whereas; studies are showing some significant improvements in the field of online educational programs.
Recently, I've been successful in convincing an organization to start distance learning programs for some of their offline degrees. One such example is massage therapy programs which has provided a lot of therapists the option to now actually get online training in the field what they are already in. No matter what age group they belong to they can just opt for any program and the important thing is that they do it in their leisure time and can opt for the best program they like provided anywhere in the world (off course if they have online support for that particular program).
In coming days, I don't see any reason for online education to stop getting popularity as it is one of the fastest growing medium of education. And with the development in the technology, this progress will even be faster.
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