- Last Updated: 10 January 2016 10 January 2016
by Mary Robinson
The Massachusetts CFIDS/ME & FM Association Winter 2001 UPDATE
Last spring after my 10-year-old had weathered yet another harsh winter with the Chronic Fatigue Syndrome (CFS), I had 2 people tell me she was really depressed. One was a friend who had CFS and also suffered from bouts of severe depression, and the other our doctor. I knew she was down, maybe a bit blue, but who wouldn't be? She was homebound and did not have the life that a normal child should be having. But depressed? When I asked my friend how she could tell, she answered simply, "I can see it in her eyes." Worried, as any parent would be, I asked our doctor "Do you think my child is depressed?" He answered without hesitation, "Yes, I can see it in her eyes." He also went on to explain that he felt she was coping with it in a healthy way, but I was stunned. I pride myself on knowing my children and being there for them when they need me. How had I missed the visual signs that were so evident to those who could simply look into her eyes and see?
I first discussed the situation at length with our doctor. He had her on a low dose of an antidepressant and we discussed the different kinds of depression. OK so I could understand that a certain amount of depression is normal for a child so limited in her ability to function, be with friends, and lead a normal life. But I wanted to do more. I wanted to put a spark in her young life. I wanted her to find something that she could be passionate about. I wanted to help her find a reason to want to get out of bed every morning. So I prayed.
I first got the name of a great child psychologist who was not only local, but also understood and treated other children with CFS. I made an appointment for 2 months away. It seemed like a lifetime. I also tried to come up with activities that my daughter could participate in given her limitations from the CFS. I encouraged her to attend school at least 2 times a week for lunch. She had been too ill in the winter to get in to school at all, so it was hard to reestablish her lunch dates, but it was a success. She would eat in a quiet room with 3 classmates and was able to once again feel a connection to some of her peers. (This is probably the one thing we have done for our daughter that has had the most profound impact on her socialization and to help her overcome feelings of isolation. We have it written into her educational plan at school that she may come to lunch 2 days a week for a quiet supervised lunch with 2-3 class mates. It has allowed her to feel the tiniest bit of connection to a group of children she would otherwise never get to know.)
As she reconnected with some friends, and waited for her counseling appointment, I tried to come up with ideas of extracurricular activities she may be able to engage in. Maybe she could volunteer at our veterinarian's office for 1/2 hour a week when she was up to it. She absolutely loves animals and has since birth. There had to be something that she could do with animals that would help energize her. But what? Then one day she had the opportunity to go with another older teen to see her llama. She was able to help brush them and feed them. She welcomed the opportunities to visit the local llama farm whenever it presented itself. I was still thinking what many of you are, llamas?? What can you do with a llama? The months passed and soon it was July and fair time. My daughter's passion for these animals had grown, and she was definitely interested in pursuing the training of one. As I looked at these hairy, South American creatures, I looked skyward and said,
"This is your answer to my prayers? To train llamas?" I honestly did. And to this day I tell myself, God works in mysterious ways, because it has been "an answer to my prayers."
After the fair I had a heart-to-heart talk with the family who owned the llamas. They were kind, friendly people who loved the animals and loved children. They welcomed any child who wished to help them work with and take care of their animals. The more I talked to these people, the more I felt this was meant to be. They understood our child's illness, and wanted to help her in any way they could.. If all our daughter could do was to come out on a bad day and pet her animal maybe that would give her something to look forward to. If she could do more than that, then great. If she couldn't do that much, then we would pray she soon could. They seemed to intuitively know what our little one needed and I immediately felt a connection to them and to their animals.
It took them a while to find the animal that was best suited to our daughter, but they did. This couple made a commitment to our child to find a llama with whom she could connect. His name is MacGregor and he turned 1 year old last month. He is a beautiful reddish-brown color with thick lush fur and eyelashes any girl would love. He is kind and gentle and loves our daughter as much as she loves him. We go to the farm 1-2 times a week. When she is up to it, she walks MacGregor around with a lead rope and halter. It may be only 5 minutes, but it is 5 minutes that she is up and around. On a bad day I walk him for her, on a good day she may walk him for 20 minutes. Then we get the brushes out and brush him down and say goodbye. Next July at the 4-H fair she will "show" MacGregor. He will be judged by how well he stands and lets her lead him around the ring. He will also compete in an obstacle course with my daughter leading him up ramps and down, and through circles and rings. It is more than I ever thought a llama could do.
And what has this to do with depression? Everything! My daughter still is unable to get in to school for more than 2 lunches a week and can not always manage her full 2 hours of home tutoring. She cannot always get out to see MacGregor as often as she'd like. But he is there, waiting for her. If all we can do is go out to feed him an apple and say hi, he is there. And his ears perk up when he sees her coming. Just having an activity that doesn't have to do with school has been a blessing. Having another of God's creatures needing her is a blessing.
Our daughter still has dark moments, and feels that her biweekly talks with her psychologist help her to sort out some of the issues she still faces with her illness. She visits on a weekly basis with our CFS friend who understands what life with CFS is like. She continues her piano lessons mostly on an independent study basis, and she works with MacGregor.
I encourage all parents to find.a passion for their child with CFS to enjoy. Everyone needs a reason to get out of bed in the morning. We all need something to be passionate about, something to do that makes our hearts sing. For one child it may be music lessons, for another writing poetry, another may enjoy gardening, but everyone needs something. Everyone needs to be needed. Do not let yourself get tunnel vision that all that matters in your child's life is school. Education is important and should be at the top of the priority list, but it isn't everything. We have a wonderful home tutor and our daughter is excelling in her studies at home. When she is able to again tolerate the activity in the classroom, she will rejoin her classmates at school. We long for this day, but it isn't today. Today she can handle a quiet lunch at school, some home tutoring, and a quick quiet visit to a llama farm. And she goes to bed tonight thanking God for the day.
Mary Robinson is a regular contributor to The Update. Permission was granted to reprint this article from The Lyndonville News. This on-line newsletter was a joint effort of Dr. David Bell, Jean Pollard and Mary Robinson. It is no longer available.
- Last Updated: 10 January 2016 10 January 2016
by Cynthia Weinstein
Issues for adolescents with Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS) fall mainly into three areas: developmental issues, school issues and social issues. Of these, developmental issues are the most crucial and are what distinguish this age group of patients most drastically from adults with CFIDS.
Developmentally, a youngster with this illness (or other debilitating, chronic conditions, for that matter) misses out on specific stages of growth and development.
This presents a specific set of problems for the caregiver. How can you mitigate the effects of these losses? How do you help your child cope with the loss of the "best years of their life"? How can you provide as "normal" an environment as possible? As the caregiver of an adolescent, you serve as a critical role model as you deal with the negative and harmful associations which inevitably occur with doctors, teachers, peers, and family friends and relatives. How can you keep your child from feeling hopelessness and bitterness from these unpleasant encounters?
The changes that occur emotionally and developmentally are very rapid and profound within the adolescent age group, i.e., the difference within a child from the age of 14 to 16, for example is more profound than the difference between 30 and 32. How do you foster a normal progression toward increasing independence? On the one band, the illness forces these kids to a high level of maturity while making them increasingly dependent on their family? How do you cope with "normal" adolescent issues when nothing is normal.
What do you do about the rest of the family? The other sibling(s) who see their brother or sister escape household chores, and monopolize so much of the energy and resources of the family? How can you maintain positive relationships?
Finally, how can you cope with your own pain while watching so much adolescent energy, potential and dreams vanish into thin air? How can you help a youngster reset goals and plans when the future they face is so uncertain?
- Last Updated: 10 January 2016 10 January 2016
by Mary Robinson
The Massachusetts CFIDS/ME & FM Association Summer 2000 UPDATE
As I was reading Dr. David Bell's article on the blood volume studies, my mind went back to 3 years ago and the role my son played in this path that our research has taken. My then 13-year old son was in the 7th grade and had been very ill with the Chronic Fatigue and Immune Dysfunction Syndrome/Myalgic Encephalopathy (CFIDS/ME) for over 3 years. We had tried so many treatments but he just seemed to continue to go downhill. Dr. Bell was concerned over the fact that my son's ADH level was very low or nonexistent. He called Dr. Peter Rowe to see what ideas he had at the time. Dr. Bell had been very interested in Dr. Rowe's findings involving neurally mediated hypotension (NMH )and florinef treatment. So I was thrilled to have him seeking out his advice concerning my son's treatment.
Dr. Rowe sent Dr. Bell to an endocrinologist who was closer to our area, Syracuse, NY; who had been doing some fascinating work with Orthostatic Intolerance. The doctor's name was Dr. David Streeten, and Dr. Bell had never heard of him. He phoned him on behalf of our son and was intrigued by the work that Dr. Streeten was undertaking, especially the ability to measure a person's blood volume. Well the rest is history. Dr. Bell was so intrigued by the findings of my son's tests that he immediately began choosing others to meet Dr. Streeten and soon Dr. Bell was collaborating on these studies. So what happened to our son, who was so ill that Feb. of 1997? .
He is doing remarkably well!! Should I call it remission or recovery? I do not know, because with CFIDS/ME there is little that is known and a lot that is unknown. In Dr. Bell's mind it is recovery, and lately I too am leaning in that direction. Following our trip to Syracuse we decided to give florinef and salt another try. It took 6 months to really see an improvement, and we couldn't believe it when it happened. In the beginning of 8th grade he was able to attend 3/4 of the day at school (up from 1 hour at most in 7th grade.) As the fall progressed we waited as we did every fall for the crash. BUT it didn't come. He dropped back to attending school for only a half day due to a decline in his health, but not a
real crash He had his ups and downs and by spring was up to almost full-days. He was never as sick as he had been the previous year. We were elated!
By the spring of 8th grade he was contemplating trying out for the summer baseball team. I was scared. What if it sent him into a spiral downhill? With Dr. Bell's encouragement I relented and he tried out, and made the team. And he gave it 110% and did great. Not only did he play, he was a starter as a first baseman! The following fall he would enter 9th grade—High School! We were so worried that he wouldn't be able to handle the extra pressure, and the classwork. But he wanted to try. He wanted to just start out with a full day, something he had not attempted in years. I couldn't imagine that he could be up by 6 AM each day and attend for an entire day. But we had to let him try, it was his life. And we did.
That was 1 1/2 years ago, and, he was right. Aside from a few minor setbacks last year, never lasting more than 3-4 days, he has remained healthy and symptom free. Last year there were times I worried, times he would have a brief recurrence and be down and out. But on the evening of the 2nd to 3rd day he would pop up, get his homework done and be back to school. We noticed a cycle in 9th grade of this occurring every 3-4 weeks, but he ALWAYS bounced back stronger than ever. He made the JV baseball squad last year, and played ball all summer as a starter.
By the beginning of 10th grade he was ready to go off all his medicines. That meant no more florinef. I was scared to death. I knew that Dr. Bell supported this path, but had offered only respect of my fears of this decision. We again let him follow his heart, and since last August he has been off all medicines. He has had NO setbacks. He got the flu for 3 days in Dec. but it was really the flu—the normal one that you actually recover from and are back to normal after 3 days. He got a bad strep infection last month and I thought, "this is it!" Even Dr. Bell was expecting a bit of a setback, but it didn't happen. He recovered as fast or faster than any other healthy teen. And he is back to a heavy baseball practice schedule.
And academically? He is one of the tops in his class! This boy who had dropped to under grade level in math and reading in the 6th grade, is now back at his peak in 10th grade and scoring ahead of his classmates in these same areas. His teachers praise his efforts and his attitude. And he beams with the ease that he seems to manage these accomplishments. Socially he has many friends, and talents. He is still shy, and always will be, but he is trying new things and has a self-confidence that I don't see in most of his friends. He has battled the dragon and won.
I have been getting a lot of calls from parents of children with CFIDS/ME lately. While I share their feelings of parenting a child with CFIDS/ME, as I am still in the trenches with my 9-year-old's battle with this illness, I also offer them hope by sharing the story of my son's "recovery." I still get goosebumps when I say that word, recovery. And maybe it is the other "R" word, remission. Either way, our boy, our oldest child who was struck severely ill after a tonsillectomy and chicken pox in 4th grade is healthy. Recovery—Remission—does it really matter what we call it? I will never stop worrying about him when he gets a sore throat or a stomachache. I will always pray when he seems more tired than usual, or a headache isn't abated with the usual Tylenol. And I will pray that he never has to tell me that he is crashing. But if I do get that call, I will thank God for every day he has had of blessed good health.
My hope, my prayer for all of our children is a recovery/remission like our son's. May they all have their day when the world is once again theirs to rule!
Permission was granted to reprint this article from the newsletter by Dr. David Bell 'The Lyndonville News." This newsletter, a joint effort of Dr. Bell, Jean Pollard, and Mary Robinson, is written for people with CFS/CFIDS/ME, or who have an interest in CFS/CFIDS/ME. Issues cover current research and theories, politics and ramblings, living with CFS/CFIDS/ME and dealing with parenting a child with CFS/CFIDS/ME.
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Notice about names
The Massachusetts ME/CFS & FM Association would like to clarify the use of the various acronyms for Chronic Fatigue Syndrome (CFS), Chronic Fatigue & Immune Dysfunction Syndrome (CFIDS) and Myalgic Encephalomyelitis (ME) on this site. When we generate our own articles on the illness, we will refer to it as ME/CFS, the term now generally used in the United States. When we are reporting on someone else’s report, we will use the term they use. The National Institutes of Health (NIH) and other federal agencies, including the CDC, are currently using ME/CFS.
Massachusetts ME/CFS & FM Association changed its name in July, 2018, to reflect this consensus.