Does Anyone Have Any Experience with Teen CFS Denial?

Discussion in 'Fibromyalgia Main Forum' started by Hippo, Feb 19, 2006.

  1. Hippo

    Hippo New Member

    Hi, I am a long-time poster who has been absent from the board for quite some time. In the last couple of years, my teenage daughter has also been diagnosed with CFS. She has had to withdraw from high school and enroll in an independent study program. She is getting by, but hardly functioning as a normal person. She is in complete denial, as is her dad. Her dad divorced me four years ago and tried to pretend that there was nothing wrong with me so that he wouldn't have to pay spousal support. Luckily, I won that battle, but I now have problems with all three of my children. The oldest has CFS and the two younger have emotional problems. Their dad pretends that nothing is wrong with any of them.

    Does anyone have any advice? Thanks.

    Hippo
  2. alaska3355

    alaska3355 New Member

    It sounds like you have more battles ahead. What is your daughter doing for her CFS? My son also had to withdraw from high school and finish via home school and some college courses. Now he's in college and his brain fog really makes it hard. He'll forget what the assignments are about (even though he may have it on a syllabus) or forget things he read an hour ago. He has qualified for disability support on campus, which means he can have a tutor for each of his classes. He's only taking a minimum full load (3 classes) but that's quite a challenge. I don't have much advice for you, but I hope that you get the support you need, and that your daughter realizes that her life has drastically changed...and how to cope with it. Love, Terri
  3. victoria

    victoria New Member

    Our son went thru a lot of anxiety/depression problems when he began high school; the first 2 years he hadn't even completed enough courses to say he'd finished freshman year. At that point since he was turning 16 he decided to drop out and get his GED...which he did...

    however during that time he started to mimic many of my symptoms physically...I've been dx'd with CFIDS...

    It has ended up that he has lyme, dx'd last May; he has been retested, it is still active, it looks like he will have to go on IV abx since oral doesn't seem to be working well.

    Even tho he has a firm dx at this point (and thank God he does or I'm sure it'd be even worse for him) he still fluctuates with denial - insisted on trying to work fulltime at Subway last fall, but ended up being physically too much for him. We are now consulting with disability lawyer to get him on SSI as he is 18.

    denial is a stage we all go thru with any major disease or stage of life, i think; but I do think it's even harder for someone young dealing with this type of illness.

    It is very difficult, he is seeing a psychologist which I think helps, esp since this psychologist has had physical problems of his own that have interfered with his life. If you can find someone like that, it may be helpful for your daughter.

    For some reason I think it is better for many teens at least initially to hear some of this from an adult who has dealt with it firsthand - my son I doubt would want to talk to anyone who's his age with chronic Lyme or similar, just cuz he still doesn't want to identify himself as having a major illness.

    all the best,
    Victoria

  4. Hippo

    Hippo New Member

    I so appreciate the responses. Does anyone have any ideas what to do about money and health insurance once a teenager turns 18, when the CFS is ongoing? Thanks.

    Hippo
  5. PVLady

    PVLady New Member

    Before the current insurance expires, find out if they will be offering Cobra. Also, call an insurance agent who is a specialist in health insurance and see what they say.

    It may be easier if you don't allow a lapse in coverage to happen.

    Good luck
  6. victoria

    victoria New Member

    She can be on SSI and get Medicaid... and SS allows someone under 22 to save $$ for school or a business, there are certain incentives, can't think of them all right now, but there's no penalty I think if she goes to school part time, which is all she sounds capable of. Altho she may want to take time off anyway, and may be in her best interest.

    Go to SSD gov site and read up on it, I'm not sure about restrictions concerning how much school, etc.; I know for working it is being able to make a 'living wage/month' which is pretty low, about $520 I think. There's no way my son could handle courses at this point with his memory problems.

    You might also want to talk to a disability lawyer when she's nearing 18 (you didn't say how old she is right now). And letters from her doctors as well as friends/family as to how it has changed and impeded her life will help a lot as well... seeing a psychologist will help this aspect as well since she is obviously depressed too.

    all the best,
    Victoria
  7. victoria

    victoria New Member

    First of all, I don't know all the ins and outs of this? My husband is on SSD and he received benefits for both our kids until they were 18... he got the most payment possible by my signing papers that if I claimed disability I would never claim anything for them under my name. But the monthly amounts for them were not as much as his basic monthly payment.

    I do know that if a parent is on SSD that an adult disabled child will receive the SAME amount of money the parent does if it is higher than what they are otherwise entitled to, EVEN if the adult child is eligible for SSD on his/her own... whichever is higher. One of those little quirks where they actually want to pay more... :)

    I do think you are right in some cases you can get certain extra benefits if a child is disabled before 18, especially if they need medical care, but not sure about extra support for daily living like food beyond what a disabled parent would collect for their child's support.

    I think I read something about an under-18 yo child getting certain benefits on the SS website but didn't pay much attention to it since it didn't apply to my son... we only found out our son had active/chronic Lyme about 6 weeks before he turned 18 actually...

    hope this helps some. I'm sure there are others with this problem, hopefully somebody else will know more, altho the SS website is pretty user-friendly.

    All the best,
    Victoria


    [This Message was Edited on 02/19/2006]
  8. Hippo

    Hippo New Member

    This is to Victoria:

    Thank you for all the advice. I have already spoken to a SSI Liaison Coordinator-type of person, I think last year. She is a go-between for County Mental Health and SSI. She helps kids who are disabled get onto SSI when they turn 18. I told her about my situation and asked her what should I be doing NOW while my children are still young, assuming their conditions don't improve. She told me I was doing all the right things in terms of documenting, taking them to their psychologist appointments at County Mental Health. She also told me that my twins could get disability with their ADHD/ODD/OCD diagnosis, but not the older one. She is now 16, I forgot to state her age previously, but the Liaison lady said it's nearly impossible to get SSI on a CFS diagnosis. So last month I took this daughter to a neuro-psychologist to see if they could identify any specific brain problems. The results are in; she has minor impairments, but not enough that would qualify her for disability. As I mentioned previously, she is in complete denial and her dad is in complete denial. I am also at a loss as to how I would even apply for disability with her denial and lack of cooperation. Plus it doesn't appear that she could get it anyway. Her symptoms are being "blown off" as teenage defiance.

    Hippo
  9. Hippo

    Hippo New Member

    bumping this to see if anyone else has any ideas. thanks.

    Hippo
  10. victoria

    victoria New Member

    Hippo...

    I know all too well how hard it is, Hippo... like I said, if my son hadn't gotten a firm diagnosis,he would still be in denial...

    V
  11. victoria

    victoria New Member


    ...again...