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Thread: Children with illnesses

  1. #11
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    my daughter bessie, is 13 - hayfever, learning issues, pdd.
    my son isaac, is 12 (tomorrow) - hayfever, stomach issues, learning issues.

    i have had both children seeing pediatritions for years. diagnosis is not forthcomming.

  2. #12
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    I have a daughter with SOD/ONH.

    Septo optic dysplasia... she is missing the mid section of her brain (Septum pellucidum) and has under developed optic nerves. Astonishingly she is a very intelligent girl, exceptional at maths but has what can only be described as mild autism. She has zero concentration. She can have random emotions, or none at all. She gives the appearance of a very flat out logical child, it is rather aerie and a part of her condition. We go to the specialists via plane in july... they will be able to shed a bit more light on things now that she is able to communicate more effectively regarding her own body and emotions. A lot of children with SOD/ONH need to be on hormones for growth... so far she has avoided that, but I think this year might change as she is tallish, but still fits into size three clothes (she is 6). And she is tired all the time. Unfortunately... she has also started having joint pain : (
    In her jaw, shoulders, hips, knees and ankles. Poor little thing. Next year she will have surgery to correct her blind eye... so the kids will stop teasing her about being cross eyed.

    This issue has just come up with us... at 6 years old they are getting graded and having report cards sent home. She was marked down in PE because she can not run or jump properly!!!!!!!!!!!!! Her condition makes her muscles weak!!! She wont be able to run or jump properly for sometime to come! I was so very angry. The report card also reflected how little time they spend with her or how little time they use to test her... she gets no special assessment... just the same as all the other kids. Of course she wont be able to write under pressure. SIGH. Im so cranky about it. I am taking her out of school to put her in a montessori school... but places are limited. : /

    Anyway, sorry for the rant. Sometimes it seems so impossible having lupus, working and having a child that needs special attention to try to keep up with the other kids at school.

  3. #13
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    hello giggle yes i understand how you feel my daughter has been judged in pe because of aspergers her co ordination is not good and neurologist did not want her doing lots of sports so they failed her very frustrating mikaela went to mackay north public school 5 years ago before we moved we always had trouble with the school and there understanding her we live in sydney now but still visit mackay sometimes hope things work out good luck i have got mikaela placed in distance education it was the only way for her not to be judged and bullied hugs kim l

  4. #14
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    Wow, this is really eye opening! It's especially interesting that there are so many illnesses related to mental functioning. The autoimmune stuff I expected, but not the brain stuff. I guess the second part of this question is how do you all cope with your own illness and your children's needs. I know for me, my daughter always comes first.

  5. #15
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    gizmo with me it is a balancing act my children always come first so at times my own health suffers but my lupus has to take second place to my children and my husband thatis just the way i am hugs kim l

  6. #16
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    Kim, Mackay is terrible isnt it? My daughter goes to Fitzgerald state school in North Mackay. I cant believe how many schools there are in such a small area and they are all terrible. We cant wait to be out of here!

  7. #17
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    When I was fighting schools and going to endless psych apps and school meetings, I was sick a lot and became depressed. I have 4 kids and eventually homeschooled the two with mental illness. That went very well. I did that for 6 years and I had less flairs . Imagine that.

  8. #18
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    yes i finally got the okay to distance educate mikaela from home yesterday so she will be homeschooled from now on this will mean more work for me but worth her not being bullied and giggle mackay schools were not good especially there support units, hugs kim l

  9. #19
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    This is really intriguing, lots of us have so much in common. I am impressed by the courage it must have taken to take on homeschooling on top of your own health issues. But yes, its different when its your children, I know I'll push myself much harder for them.
    My youngest daughter (7) was diagnosed with Aspergers and high levels of ADHD when she was 4yrs old. I have often felt I never fell pregnant again b/c the universe knew I'd need both hands for her It definitely hasn't been easy, very tiring, and I wish I could provide my kids with more experiences (physically). On the positive, I think my own health & social issues have given me a unique ability to empathise and connect with her. She is doing fabulously atm.

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