Anyone else the parent of a teen with CFS?

Discussion in 'Fibromyalgia Main Forum' started by macki, Nov 12, 2002.

  1. macki

    macki New Member

    Hi,

    I am hoping to find other parents) with a teen(s) with CFS, and especially any who have had to deal with school absences. We are having a difficult time with such a situation and hope to be able to compare notes with others.

    Macki
  2. macki

    macki New Member

    Hi,

    I am hoping to find other parents) with a teen(s) with CFS, and especially any who have had to deal with school absences. We are having a difficult time with such a situation and hope to be able to compare notes with others.

    Macki
  3. Shirl

    Shirl New Member

    We do have someone on the board with a teen with CFS, and I hope they see your post. Also we do have a few teens that are members too.

    Hang in there, I am sure someone will respond soon.

    Shalom, Shirl
  4. Clearlykoi

    Clearlykoi New Member

    Im not a parent. Nor a teen anymore...... But I've had symptoms of Fibro since I was 5.(so I guess I can't even qualify as your CFS either!) I'm now 21, and just got the guts up to get diagnosed officially.

    I personally missed a TON of school, and I got a ton of "reactions" from teachers, and I wish you the BEST of luck in your adventures to come. I was lucky enough to be an honor student, and have NO record of misbehavior so they didn't pursue my bad attendence. I was able to do my homework at home, or between classes, when I wasn't feeling to awfull. And honestly, I kept my classes easy, and didn't pursue HARD classes that I knew would cause UNDUE stress. What I wanted to learn that was extra, I pursue on my own time, away from teachers who CAN'T SEE a disease they can't understand!

    I doubt this has helped AT ALL :) But I thought I'd share, and wish you the BEST OF LUCK!!!


    Jenn
  5. christieuk

    christieuk New Member

    Not only do I have a teen with ME/CFS but I do as well. Im in the UK tho.

    I havent been on the board since June due to so many problems, so Im not up to speed about whats been going on here, but am happy to chat with you about teens with ME/CFS if you would like

    BW
    Christie uk
  6. Daphne

    Daphne New Member

    My daughter is now 20 and unable to do most anything which requires walking. However, she is taking 2 online college classes each semester (this is as much as she can manage)and is able to recline using her laptop. My youngest daughter also had CFS at age 15.....but (luckily) has now recovered. You are not alone!
  7. macki

    macki New Member

    I would like to compare notes re: teens with CFS/ME. Also would like to e-mail (if this is possible). I have other interest re: UK. I am not able to get on the web and this site too often, but can e-mail much more often. Thank you for any ideas.

    Macki
  8. macki

    macki New Member

    I do not have access to the net very often and apologize for not saying thank you sooner. I appreciate all replys and it helps to know I am not alone.

    We have gotten some cooperation from the school, but they consider my son to be faking his "illness" and to be depressed or having social anxiety. Without a doctor's excuse for him missing so many days, we "get no respect" LOL. Am trying to find new doctor.

    Macki
  9. karbear

    karbear New Member

    Hello, my daughter is 13 and just diagnosed with Fibromyalgia, Costochondritis and myofascial pain,along with acid reflux,chrondomalcia of the knees..she has been sick for years and we finally had a diagnoses a few months ago..its been awful,she has been soooo sick,they also say she has depression ,but my theory on this is if you felt like she did you would be depressed too..i was diagnosed with FM after a battle with breast cancer,one year in remission,,thank god,,,we are now going through the process of getting homebound schooling approved,the doctors have filled in the paperwork and now we are awaiting the school board to approve this,she will be able to attend school on good days and have a teacher come to our home on her bad,,which there are many many bad.....she has missed 7 of 13 days this sememster,she is failing everything right now, each year has gotten worse,she fails every test with grades in the 20 adn 30's, she has terrible memory,she could study all nite and then go in the next a.m. and fail..and each teacher says that she tries so hard that its frustrating for them too,her teachers are awesome,very willing to help her out,but it won't help her when she needs to take the end of year exams and she needs to pass ,we are very worried about this, she has had tutoring for years to help,but nothing seems to help yet, I'm hoping with homebound it makes her life easier,she is way to young to deal with this stuff already, i can't imagine being so young ,being diagnosed is so hard at my age and there are days i can't even get up..i' can't imagine being 13..all we can do is pray for our children that they will find help to help them and we have to be as understanding as we can...best of luck to you and god bless,karin
  10. pamelasng

    pamelasng New Member

    Hi Macki, we are from Australia and the laws change here from state to state so I cant tell you what they demand there. We homeschooled our girls untill last year the 16 year old has just finished the school certificate, the younger at 15 has had to leave school and hopefuly attend Tafe next year.I just wanted to wish you well.I have FM and the girls were born with it,walked like 80yr olds at three,its just so sad to see our children suffer,the best thing I did was join this message board,and then introduce my children to it, the younger one posts a fair bit which is great because sometimes I dont have strength to give her the emotional understanding she needs, but so many people here listen and talk to her, mostly early hours of the morning. I guess the most important thing is to keep giving them hope that someone will find a cure, I spoke to a CFS support leader and she said they all felt that learning is something that is not confined to ages,if things are bad why make them worse. When Melissa was going through a really tough time at school with pain,memory probs ect, we asked for support from the school,there was no interest at all in helping so we allowed her to stay home and work through things herself,she keeps her mind active when she is feeling ok and has not given up on completing her education,it will just take a little longer. I really worried for years about their education but things find a way of working out,remember you are not alone though at times it may feel like it. When they were home schooled we let them study the things they enjoyed the most which at the time the elder liked interior design and completed a course over two years,the 15yr old loved meteriology and had many books on the subject, she knows it all back to front, they did the basic subjects as well but when they were not pressured about them they spent extra time working out what they didnt understand,and if they had bad memorie days we let it drop then went over it again,stressing just makes it worse for them and for you. One of the most important things for our girls was to have pain management lessons and see an occupational therapist as well,they were told to grieve for the things they cant do and get on with what they can, they were shown ways to help cope with pain such as using a slopeing desk to read and write and keep a pillow under their arms when travelling or sitting for some time,using padding around their pens.They even wear a neck brace when travelling to stop the neck drooping and causing pain. Heaps of other things to help with relaxation. Good luck to you,things will work out. Bye for now....Pam.
  11. macki

    macki New Member

    After years of going to local doctors and being told they didn't know what was wrong with my son or that he was depressed, someone told me about FM/CFS. I started searching the net and found some sites that listed the symptoms. As I read the symptoms it sounded like they were talking about my son. Then I started approaching doctors with the possiblity that he had FM/CFS. I heard the following: FM/CFS doesn't exist or that it is nothing more than depression. Meanwhile they did start running test to rule out all the other illneses. I finally contacted one the websites for their information packet which included CFS support groups. I started calling the people from these support groups and one mentioned a doctor in our area that could diagnose CFS. We went for an appointment (and I was able to take copies of testing done by the different doctors) and they were able to diagnose CFS. Because he has had mono twice, he was considered a "classic case" of CFS. Unfortunately they feel that my son should be attending school full time with rest periods if he feels bad. They feel that he might have some underlying social anxiety or something else that prevents him from going to school. He has had an evaluation by a psychiatrist who didn't find anything (despite a family history of depression) and has only recommended couseling due to a life changing illness. Now the doctor who diagnosed the CFS has now moved to another state and we currently have no doctor.

    The only way I can think of getting a diagnosis is to talk to people already diagnosed for their suggestion of doctors who are qualified to diagnose FM/CFS. According to the net, no one field of medicine has "claimed" FM/CFS, so the type of doctor to go to varies. Some doctors will diagnose FM/CFS, but will not give a written diagnosis for disability purposes or for school absences because they don't want to involve themselves in the possiblities of legal issues. It also seems that there are many theories for treatment and I have come to the conclusion that some meds might help, but in the long run time is the only "cure".

    I'm not as experienced with this DD as most of the other members. I can only tell you of our experience and hope that something will be helpful to you. I wish you the best. I do not have access to the net all the time, but I do check periodically to see if there is anything new.

    Macki


    [This Message was Edited on 12/08/2002]

[ advertisement ]