My 11 yr Old Daughter with C.F.S

[ladybugmandy]

the same thing happened with MS, too.

[granny on the go]

My youngest son has had cfs since he was 11, off and on. He is 42 this year and lives 5 1/2 hrs away.
When he was 11 we were both ill that winter( me w/my usual), me like always and him for the first time. I took him to the doc my husband wanted me to switch to and the third time we went back in about 4 weeks time the doctor told me essentially that I was some kind of hypochrondiac and I was making my son one, too!!??
I don't know what you can tell an 11 year old child that will make him run a fever every day for a month?? but it didn't make sense to me.
I found an old doctor in town to take my son to and he was able to get him well in a couple of more weeks w/lots of antibiotics.
I came across "Let's Get Well by Adelle Davis about that time and started poking vitamins at him and he only missed 3 days for my dad's funeral the next year of school.
He was last ill about 4-5 yrs ago when he got poisoned in a lab accident. I am worried about him now, he has worked over a hundred hours a week most of the time for the past 2 years and I think he is going to be ill if he doesn't get some real rest soon.
The last time he was sick he took all the vitamins I could afford (lol)(he was too sick to work so he went where all the kids go when they need lots of free help!! Mom's house!) and sent for some special egg protein. He took that and worked out at the gym every day....and slept the other 22 hrs a day. I forget what medications he was taking. It worked, and that is what counts.
He was in the Marines for 6 yrs, made sargent, no room for hypochondiacs there! And, he only gets depressed when he is ill!

[fatiguedman]

I've had CFS for 13 years. I have tried everything from medical treatments and counselling to just plain ignoring it and trying to get on with life. I can categorically say that it is not a psychological problem, and that it has nothing to do with my mother.

[angelam]

my 13yr old daughter also has it for 2 years.her education has been sporadic but we have a combination of school partime (maybe 1/2 day per week to 2 full days) and home tuition (max 8hrs per week ) When in school she has a classroom assistant and has to use a wheelchair to cover the distances between classes .She is frustrated and feels isolated even in school as she just wants to be normal. Melatonin 6mg slow release at night (titrated up from 2mg initially) and the use of a light box in the winter did seem to be the most effective treatment to date however she hasnt reached normal functioning (even for a short period ) but she is in a much better position than 1-2 years ago.

[angelam]

jennye i had cfs myself 2 years before my 2nd daughter was born .she is 13 and has cfs for 2 years . understandably i was devastated when i realised she had it (months before we got a diagnosis) however i always encourage normality ,reassure her she will get better, treat the aches and pains with mild analgesia, comfort her when she is distressed but always remind her that she will get better. We look at ways at encouraging her to be mobile and independent and having "normality" She uses a wheelchair to go shopping or school when able but she only views it as a means to get out of the house when she isnt able to walk any distance. i also have to differeniate between CFS and some elements of TEENAGE BEHAVIOR. i find your views on the subject demoralising as you dont recognise that there is also a physiological aspect to this illness. i do not encourage dependence or extreme emotional attachment however as a mother i can only encourage her to be positive and highlight that i made a complete recovery. I asked for a referral to CAHMS where she has regular sessions with the psychologist who helps her address the anxiety and social isolation that she experiences however if you feel that your programme may be of assistance i would be grateful for further info

[Frosty]

First of all, for every CFS message board out there I encourage the administators to create a section for CFS in kids - maybe a section that kids can go to to talk and make freinds with others like them and one section for parents to get answers and share with one another.

There are too many kids with this disease and there are really NO resources set up to help the parents. At least thats my opinion and I have a daughter - 17 - that has been ill for 6 years and I have been driven to the brink with frustration trying to get help and find resources for her.

Not only that, she is desperate to know she is not alone and to have friends out there that understand. Lets put some effort into helping our kids COPE and meet others so they are not so alone.

As for school in the US, all your stories are familiar to us. Our daughter and family went thru HELL despite all the so called laws that protect against discriminating sick children from access to school. Most schools have figured out a way to meet the letter of the law but provide nearly nothing in terms of real schooling and access to your child. Some states and school districts are better I am sure but ......

Eventually we found a high school that offered a unique program to our daughter. It is a charter school in California - but the same desgin can be used anywhere in the US that has charter public schools. It is set up so that a child can go to the campus and attend regular style classes but they are called WORKSHOPS so that other children that do their work from home are not penalized if they do all their work remotely. Also, each child is assigned a mentor teacher that they meet with one a week or every 2 weeks whatever works. The child gets regular school assignments and works at home or on campus and turns in their work once a week or 2. It incorporates all the ideas of homeschooling but also gives the children a real campus to go to if they wish. The school is called Mountain Oaks in Calaveras County, Calif. They were a GOD SEND. More schools should be created like this to server the needs of our kids! I LOVE THEM WITH ALL MY HEART. They restored my child's faith in herself.

Now for the health aspect. We have had NO success in getting a diagnosis for our daughter. It is definiltey CFS but the UC Davis Medical System in Calif. finally told us they are just NOT equipped to figure anything out. We have been at it for 5 years and our daughter just relapsed after only 2 weeks of college. So much for that! We will be withdrawing her.

We are desperate to find a real clinic / physician / hopsital in the US that willperform all the needed REAL tests to determine what she has and then be able to obtain whatver possible treatment is out there. She cant live in this darn limbo land any longer. It is not going to go away.

So, WHERE can we go???????????????? What clinic or major US University Hopsital system can REALLY run the assorted tests to diagnose her?

[mimi73]

At last I have found others who feel the same as me. My 10 year old son has CFS and although school is kind and caring I do feel that it is so easy pass this off as a psychological problem, especially so from the hospitals. my son has had CFS since the age of 5 (or possibly earlier) and had immunity problems and complex regional pain syndrome (another thing they say is psychological). I know psychologically my son is fine, no problems at all, i have even checked with his school in case they could see something I couldn't...I was told categorically by the school they had NO worries about his state of mind, they even went on to say he was one of the most emotionally stable kids they had in the school! The hospital however thought it would be better for his CFS if he was admitted to a unit at the hospital so they could help him full time...surely if anything was going to affect him psychologically it would be being taken from his home surroundings where he feels supported and safe and making him stay away from home and his family?!?! I told them this would not be happening in no uncertain terms and will stand my ground despite the overwhelming pressure and have also given him a months break from his physiotherapy and he has made so much progress at home, probably more so than a years physio (he can now walk unaided for small amounts of time)! Honestly although it can be hard you have to trust your instincts and stand your ground for what you feel is right. This goes for schooling too, god how hard is that! The schools are so obsessed with attendance they almost forget that education is the important part. Keep on nagging for help anywhere you can after all if they had helped you when you first asked you wouldn't have to keep on at them. thankfully now he goes to a lovely school who are very understanding but still a little slow on the help with education at home... I found http://www.bbc.co.uk/schools/ website they have a lot of things for kids all ages and it's done in a really imaginative way so keeps them interested also because its on the computer/laptop they can do it in bed or a comfy chair, reducing the pressure of learning for them, after all it's not that our children don't want to learn, quite the opposite, it's just school hours are sometimes too intense which again makes online learning better with 24 hour access which can be broken down into a few minutes at a time if need be. Well this is what I do for my son, his sister helps too and they quite enjoy the time together. I hope this helps and I totally agree how hard it is re education for kids with CFS but we can only do our best.

Jennyalynn I understand you feel you have a point to make, do you actually have children? Do you understand the bond between parent and child ESPECIALLY when sometimes diagnosis of CFS is so hard, you have to show them you believe totally what is happening to them and support them unconditionally, this can in no way make them exhausted, and just one more point, doesn't EVERY child feel the need to please mum and be good for her,lets not loose sight that some children are just well behaved, just as sometimes they are challenging, this is part of the bond, it is not a burden for them nor is it based on the mothers anxiety I am pretty much convinced you are not a parent or you would know that anxiety comes with the job of being a parent as well as joy and happiness...everything in equal measures. Sometimes it doesn't hurt a child to see that their mother cares and has emotions, after all it is only through dealing openly with feelings that children learn how to cope with their own emotions.