dobrydy...help for my nine year old

Discussion in 'Fibromyalgia Main Forum' started by maryld, Mar 7, 2007.

  1. maryld

    maryld New Member

    Hello.I don't post much because i am usually way to tired and cant think but i try to read and reply to as many posts as i can......I am so happy i came across yours........ My nine year old son, i believe, has CFS.(and maybe FM)Started when he was five...that i can remember.....and got worse two years ago...........I actually have an appointment with Dr.Bell the end of March.......... My son misses so much school and i think the school thinks we are crazy......... I stick up for my son and sometimes have too big of a mouth.....(i have brought them documentation of all the doctors he has gone to and articles on CFS/FM)..... I know once and if i get the diagnosis from Bell we will have legal rights, but is their any advice you can give me? Also is their anything i should do or ask of Dr.Bell that you recommend? I feel so bad when my son is screaming in pain or so aggravated he cant think that he starts punching walls.....i know exactly what he is feeling for i suffer to. Oh...very important question.....did you notice a big change in behavior in your child?My sons behavior can be horrible now and it never was....could it just be due to aggravation and how much should i let him get away with?(he talks back,fights more with his 7year old sister,gives me a very hard time with school work,wont eat what we make most of the time....just some examples)I know allot of healthy kids do those things but this is not like him. Thank you in advance for any advice.....sorry so long.....and i wish i can space my sentences but my computer is not letting me and i dont know how to change it.......MARY
  2. dobrydy

    dobrydy New Member

    Hi, Mary,
    To answer your question, no, my son never had any change in behavior or any psychological disturbances such as depression, mood swings etc, of which I hear so much. Never before the illness and never after. He remains well behaved and affectionate even throughout the teenage years. When he is on his sickest he of course can get cranky or moody, but no more than I myself would be when I am sick.

    I am so heartbroken that your son is in so much pain and they are not doing anything to help him. This is something that Dr. Bell should help you with.

    I am glad that you are going to Dr. Bell. Please write down everything you can from the visit. They do letters to school, I am aware of that. You can ask him to put it in his letter that he will be sending to the pediatrician, a couple sentences in regard to school, need for accomodations, his intolerance of exersice, so you can shove it in their face every time there is an argument in school, which I know you have a lot. Look it up on Dr. Bells website, I think they posted some info there. If not, Dr. Bell does it routinely so they should know what you need.

    Why don't you request homebound instruction for your son? This way he does not have to miss school, or to have part of the classes at school and some at home depending on how he feels on a particular day. You can ask Dr. Bell to put it into the letter. My son has been on homebound instruction since 5th grade.

    Have you read about Shanon McQuone and her son? Find her on the internet. She wrote a lot on how to give education to children with CFS and FM, how to fight with school etc. . Her son also experiences pain, and she fought for his educational rights.

    May be I forgot something.. if you need me, post for me, I am always looking but rarely posting unless there is something I know and can help with.

    Gentle hugs to your son,
    Julia




  3. maryld

    maryld New Member

    Thank you so much for your reply. I will look up everything you mentioned. Your so right with not feeling good and being cranky.....that's exactly what happens but to the extreme with my son. I guess being so young that is the only way he knows how to express his anger for feeling so horrible. He told me last night he hates being him.Makes me so sad. I need a diagnosis to get any kind of homebound instruction. That is where i hope Dr.Bell comes in. He seems like a great man who really cares. One day i took my son to the emergency room and when i said what he had.....wow.....what a change in their attitude.....i gave it to them! This gets me so angry......and school....they say they care and they will do what they can but i know they just said what they had to. That is horrible your son also suffered at a young age......how is he now? Has anything helped him i should look into?Thanks again for your reply.....so nice to talk to someone who can relate.You sound as if you went through what i am now. Though i am not looking forward to the six hour drive to Dr.Bell i cant wait to meet with him!Thanks again Julia....i hope your son is doing good....