how do I help my nine year old

Discussion in 'Fibromyalgia Main Forum' started by mel32, May 28, 2006.

  1. mel32

    mel32 New Member

    my nine year old daughter has just been diagnosed with cfs and I dont know how to help her. as you probably know it is extremely frustrating for us not to be able to do anything to take her pain away.
    As much as we try to get her to go to school and socialise it is very hard as the school arent being very helpful. As they believe she shouldnt be there if she is sick.
    I suppose i was wondering if you could give me some advice on how I may be able to help her and also to find out if there is anyone else out there with a child with cfs also.
  2. KMD90603

    KMD90603 New Member

    I'm 24 and have CFS, however, mine dates back to having mono when I was 15. I remember I missed ALOT of school throughout high school. I would wake up in the morning feeling like garbage. I'd always be running a low-grade fever when this happened, and just feeling generally sick. My mom would get frustrated because she thought I was well enough to go to school, but she always took my word for it. I was just diagnosed with CFS in June of 2004, but looking back I can relate so many of my symptoms to it.

    The best thing you can do for your daughter is to never second-guess how she's feeling. If she tells you she's feeling sick, give her the time she needs to rest. Exercise is good if she can do it, but she needs to alternate activity with rest. Many people with CFS run fevers, so you may notice all of the symptoms that go along with that...achiness, headache, major fatigue, joint paint, swollen glands, sore throat, etc. I usually find that a couple Ibuprofen help. My fevers tend to range from 99.4 to 100 degrees. Don't give her aspirin, because that can cause Reye's syndrome in children. And be careful with Tylenol because too much of it is toxic to the liver.

    It sounds like the school is pretty clueless as to how bad this illness can be. Have you tried having the doctor contact the school administrators about the situation? Having this disease can be very isolating, and it would be nice if the school can help to alleviate some of that isolation.

    In conclusion, just listen to your daughter. Assure her that she is not alone and that you are there for her.

    Gentle healing hugs,
    Kim
  3. mel32

    mel32 New Member

    you have both been a great help, it is really hard to get people to understand. People ask how she is all the time and if I said she had something terminal or something better known in society theyre reaction im sure would be different, they just tend to say things like oh she just needs to get out there and be more active. But we all know thats rubbish. I live in a small town and nobody really knows what it is like for her, my boss has been great his wife was diagnosed 2 years ago so he has no problem with me taking time off when required and is extremely interested in her progress.
    Im only just learning how to deal with this myself so I suppose I shouldnt expect too much of others.
    once again thankyou and if you have any more advice please let me know
  4. Shannonsparkles

    Shannonsparkles New Member

    I was symptomatic for CFS back in elementary school, before I got mono. After mono, there wasn't much left of me. I decided to do corespondance school at home for a couple of years (most of grade 9 and 10).

    It made so much difference in how I felt not being bound to the school schedule and being able to get enough rest. I didn't know I had a chronic illness. I just knew I was stressed and had sensory overload and could hardly get up in the morning or sleep and was sick all the time... I made the decision myself to do my schooling at home, and those were the best years I have had with this DD (darned disease).

    School is sheer torture when you're sick like this. You're not learning, you're not socialising, you're just being sick, sicker than you would be if you could rest more and not have to be there, and wearing yourself down further instead of trying to rest and recover. If you can keep her at home, even for half a year just to try it out, it might be so much better. Rest is so important to recovering from this.
    ((IMHO))
  5. victoria

    victoria New Member

    please work at trying to get her tested for Lyme. My son over a period of time, 15-17 years of age, started showing all the physical symptoms I have (CFS) but then also got worse symptoms and pain that I don't have. He was not able to stay in HS due to his symptoms, ended up finally getting his GED.

    I know he would've been diagnosed with CF/FM as all the blood tests showed up as normal even tho he also had low BP and pulse and had lost 10#... 4 years ago I'd have accepted that diagnosis for him.

    Our internist didn't know what to do with him or where to send him or what to suggest -- altho he did agree that SOMEthing was wrong.

    However, after all the reading I've been doing and seeing how many people are showing up with Lyme after having the diagnosis of CF/FM for many years, plus the fact I'm trying an experimental protocol to which I've shown signs of improvement as well as herxing (reaction to die-off of bacteria),--

    we decided to have him tested for Lyme and co-infections a year ago. He was totally positive even according to CDC standards, still is, is considered chronic, being treated for the past year and continuing...

    He is now 18, has done a year of oral antibiotics and other meds, and has shown a slight bit of improvement physically -- he's been able to gain some weight back, some joint pain has improved, some improved energy between protocols of antibiotics, altho cognitively he hasn't really shown any improvement. He may have to do IV treatment, we'll see.

    Lyme is a bacteria spirochete, the biggest masquerader of all in many opinions, is able to get into even our white blood cells and every tissue of the body and can form cysts as well to hide out in...

    If you click on 'message boards' up above, you'll see there's one for Lyme -- it is new, but there is more information there. Please take some time to read it... also check out ilads.org

    Also consider other stealth pathogens like mycoplasma... you can do a search in the box up above for that on this board...

    hope this helps!

    all the best,
    Victoria





    [This Message was Edited on 05/30/2006]
  6. mel32

    mel32 New Member

    she started out being diagnosed with glandular fever or in the U.S I think you call it mono.

    that was when she was seven. She never really recovered and after many visits to the doctor specialists etc of which one told me she had childhood depression we finally found a doctor who listened to her.

    this was a great relief that there was a name for this and it isnt in her mind. we are just begining to get to know her limits which is very diffcult to determine as I cant feel what she does. whichas a parent is really difficult I want to take her pain from her.

    When she was little you could fix everything generally with a baindaid but not this.

  7. redsox10

    redsox10 New Member

    HI Mel,

    There are some great web sites for education. Your daughter has rights. Does she have an IEP? There are things the school could be doing and if you get her labeled under other health impairment and she has an IEP it would help.

    Socialization is so important when kids are ill. My daughter is 17 and has been ill going on 4 years. She attends school part time and have always made sure she sees friends, even if it was a couple hours every so often. If she is well enough to get into school even for an hour and for the lunch time a few times a week. This has helped me daughter not to feel so isolated.

    There is a great web site that has allot of education support on the boards plus child and teen support. google pediatric network chronic fatigue and it should come up. wrightslaw is another great site with a ton of info for education.

    I want to tell you my daughter was diagnosed with CFS by one of the top CFS specialist in the world. After 2 years she was diagnosed with Lyme Disease and is now seeing a Lyme Doctor for this. She had 2 negative ELisa Lyme tests before this diagnosis. This is my opinion but I think the majority of CFS is in fact Lyme Disease. My daughter has a long way to go but is getting well. She has been treated for lyme now for 18 months. Please read the lyme info on the lyme board on this site.

    Healing thoughts are with your daughter. I know how hearbreaking it is to have a child who is ill. So sorry you have to go through this.