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View Full Version : Seeking Advice on Activities for 13 year old, Please!!



mommymc
09-02-2005, 11:26 PM
Hello, brave and courageous people !!! I have a question in regards to physical activities.
As some of you know, I am a mother of a wonderful 13 year old young lady who was diagnosed with SLE on June 1. ( She also has high cholesterol, arthritis, polymyositis, and has anticardiolipid antibodies. ) She is entering high school on Tuesday.
My question is , what activities do you find the most enjoyable and that you can do that 'everyone else' does. ( Please don't get me wrong, I am not stereotyping anyone. )My daughter used to be a pitcher for fastpitch, she had to cut out, due to pain, lack of strength etc....
I would appreciate some feedback and ideas what is working for you. For a 13 year old, what should I do? She would like to continue for social reasons.
I thank you in advance for sharing.
EVERYTHING GOOD IS POSSIBLE !!

andyman
09-03-2005, 06:28 AM
mommymc:

Hi!

I am very sorry to hear about your daughter and I hope you both get things figured out.

I can't give you advice on what activities might be good for your daughter. However, I can tell you what my experience has been regarding activities. My activity level can really fluctuate. I know that I can even go in the same day and have one portion of it where I can function just fine and then later on I can't do much of anything due to exhaustion, pain etc.

I have found that sometimes I would get myself into a rut and it would be too easy to decide to not do something because I "might not really feel up to it".

Now I try to do as much as I can without pushing myself over the limit. It's a bit of a balancing act sometimes.

Good luck to you and your daughter.

Andyman

SoleSinger
09-03-2005, 10:47 AM
Does she like things like choir or theatre? Those are some things that she might be able to get involved in that aren't too physically demanding... Also, maybe the yearbook, or school newspaper?

Just a couple of ideas...

mommymc
09-07-2005, 11:48 AM
SoleSinger and andyman:
First day of grade 8 in high school went okay. She only went for 1 hour and was very tired. She took a look at the school list of activities, and she might join drama. She was talking about maybe doing backstage 'stuff'. Although she isn't sure on anything, I told her to try and see. We will see what the rest of the week holds.

EVERYTHING GOOD IS POSSIBLE !! :angel:

andyman
09-07-2005, 08:00 PM
mommymc:

Do you think her teachers might have some input as to what might be easier for her physically?

I do understand what she is going through. Been there, done that, got the tee-shirt!

I have run into an "uncertainty" in myself if I'm having a bad time physically. I know what I want to do but they go into uncertainty of will I be able to or will I get in the middle of it and have to stop etc. It can be very frustrating.

The other question I have is where things are at medication wise? Is she in the beginning of treatment? The reason I ask when I first got diagnosed and with every flare up I've had since, I had a bad time in beginning. However, as treatment went on and I got things more under control I was feeling better and able to do more. So, it might just take a bit of time.

Andyman

mommymc
09-07-2005, 08:25 PM
andyman:
Thanks for the reply. As she is starting a new school with 1600 students, I don't know the teachers, yet. I have had a meeting with her counsellor for an hour, and try to educate the counsellor about Lupus. We may have to get the Dr. at Children's Hospital to request she get an elevator key.

The one thing that I have noticed, that very few people know anything about lupus, unless it has affected them. ( I know I used to fit in that box.)

I sent letters and pamphlets explaining lupus, arthritis, and polymyositis and how it affects my daughter to the teachers yesterday.

She is newly diagnosed; June 1, 2005. She is down to 25mg.pred., 200 mg plaquenil, 1 mg. folic acid, multivitamin with 400 IU of vitamin D, 1500mg.calcium. Tylenol & Ibruprofen are PRN.
Since hospitalization May 19-22,which was the start of this whole rollercoaster ride, we are still trying to get the beast under some control. I think that after this first week of high school is over, we will see some improvement.

Thank you for caring.
EVERYTHING GOOD IS POSSIBLE!!

SoleSinger
09-07-2005, 08:46 PM
One thing that I have found since I was diagnosed this past July, is either people know NOTHING about Lupus, or they THINK they know EVERYTHING about it... And, for me, that is very frustrating... Especially when you can TELL that they have no idea what they are talking about!
They try to help, but, when it comes down to it, they seem to think they are such experts that they really aren't as understanding as they want to be. So, watch out for those types, too!
I'm glad your daughter is going to look into drama! Costume crews, make up crews, hair crews, are all pretty low impact things... Building sets and running around getting props and playing with the lights can be INCREDIBLY demanding... FUN, but taxing... Sound crew could also be a good choice, if she doesn't want to be ON stage... Also, once she's been around it for a while, she may want to look into something like assistant directing or stage managing...
I hope that she finds something that fits for her!! Hopefully it will help her keep her mind off of some of this stuff!
I know if it wasn't for my band, and my music, I don't know WHAT I'd do!!

Hope things are going well!! Keep me posted!

Missy
09-13-2005, 05:53 PM
I feel for your daughter, as I used to like to ride my bike, hike, etc, but now don't have the energy. The important thing is to do what you like when you can. Take advantage of the good days.

Things I like to do now - read, cook (maybe home ec cooking class?), walk my dog, go sailing, golfing, and do things like fundraising for my local Lupus organization. She might like this as well - you're around people who understand and you feel like you're contributing.

mommymc
09-17-2005, 07:11 PM
Thank you all for your great ideas. My daughter isn't feeling well enough to join anything right now. That is what she tells me. It has been a tough week. She has been in bed sleeping by 8 pm, everyday. She just doesn't have the energy,yet. I took her for her monthly blood work on Wednesday, and after about 45 minutes of trying, no veins. We had to go to Children's Hospital were they had to insert a butterfly to get the vein, then a syringe to get the 9 viles of blood out. It was absolutely, horrific!!! Taking blood is getting harder all the time. The Dr.'s will try giving her 1mg. of Ativan, to try and relax her seeing as the music, meditation, nothing works.
Anyways, thanks for helping, I will keep you up to date.

andyman
09-18-2005, 04:59 AM
mommymc:

My heart goes out to the both of you, particularly your daughter. Been there, done that, got the tee shirt on the can't get a vein problem. It's tough for a 50 year old man and I can't imagine what it's like for a 13 year old.

One thing I did find that helped some is getting my blood work done later in the day, not in the morning. I think that it was due to later in the day my circulation got a little better and it seemed to go a bit easier.

I do have a question for you. What is your daughter eating?

I have been having good luck with a more vegetarian diet. It seems to really help on the general inflammation.

Anyway, I hope that helps.

Andyman

mommymc
09-19-2005, 11:30 PM
Andyman:
Thank yo for your concern. Our family is eating very healthy. Nothing white in our diet, anymore, except I guess for skim milk. Ha! Ha! We do eat a lot more fresh fruit and fresh vegetables than we used to. We are not vegetarians, but the meat we eat is wild and obviously free range. We eat buffalo, venison, moose, goose, wild salmon, chicken, turkey.and yes we eat beef. Being that my daughter is very young she does need to eat a lot of protein. Our family still can't get acquire a taste for much tofu. We use some in stir fry and Miso soup, but not enough to make a serving of protein. Sorry, I am blah, blah, blah, today.

Thanks for taking the time to ask, and God Speed!!

Mommymc

andyman
09-20-2005, 03:57 AM
mommymc:

I totally understand. There is a book I read recently called "Inflammation Nation" by Floyd Chilton. He's a medical researcher at John Hopkins University. He really explains inflammation as it relates to lupus and othe autoimmune diseases. He also goes into foods that are okay to eat and which ones aren't. Believe it or not, you are better eating beef than turkey or chicken, from an inflammation point of view. His big thing is specific fish and supplementing with EPA. I highly recommend it. I don't eat a lot of protein but when I do eat it I know what to go with and what to stay away from.

I hope to hear good news from you about your daughter soon.

Andyman

kelsmom
09-21-2005, 08:08 PM
Dear mommymc,

First of all, please know that you and your daughter are in my prayers.
I, too, am the mother of a daughter who consistently battles the awful beast. She was diagnosed at 15 and has endured a wide variety of flares for the past 13 years. It hardly seems possible that lupus has been in our lives that long already.

My daughter was also the pitcher on the varsity team as an eighth grader
and participated in many other sports and activities. The onset of lupus, meant that there had to be changes. Give your daughter some time. She is going through a very difficult time as she deals with the usual changes of puberty, let alone accepting that her body has been invaded with a disease she can't understand and had no way of preventing its onset. She will know what she is capable of doing as she adjusts to living with the unpredictability of lupus. Our daughter traded volleyball and basketball for being a cheerleader. She made sure that she was one of the best cheerleaders on the squad and enjoyed every minute of it. She traded track for golf. She took on many responsibilities with National Honor Society and student government. There were times when she felt quite well and she could handle all these things. Other times, she had to back off and let other classmates help her complete things. Your daughter will learn to gadge things and she will learn to listen to her body.

I can't say that it has been easy the past few years, but our daughter has earned a college degree and is working on her masters, married, and holds down a full time job. She, too, constantly battles fatigue and arthritis, but she works out whenever possible. The gym is a part of her daily routine. Even when she is tired, she finds she has more energy and feels better after she works out. She bikes, lifts weights, runs, skates and does a wife variety of exercises. I can't tell you how many walks we took in the middle of the night when she was a teenager. Getting up and moving was a way to help her deal with the pain. She has gone through some major flares, but tries so hard to meet each one head on and deal with it. It has made her a stronger person in many ways and she accepts challenges with determination. I admire her deeply. She is my heroine.

I am also concerned for you. I know how you must be spending so many sleepless nights and the desire to have the disease transfer to you just burns inside. I know how much your heart aches and how you keep searching for answers. All I can tell you is to lean on the Lord. He has seen us through each flare and has carried us through some difficult times. He will be there for you also.

Please know how much I care for you, your daughter and your family. The one thing good about lupus was it made our family very close.
Holding you all close in prayer.

mommymc
09-28-2005, 10:56 PM
kelsmom:
Thank you so much for your very kind post. I appreciate you sharing your personal story. I especially got encouraged to read that your daughter has achieved so much. It really gives me hope!!
My daughter has become what appears to me, as a social outcast. No more friends call, she tries to call them, but it's just polite conversation. She doesn't sit with anyone at lunch. She says she is fine with this and that I worry about it too much. She appears normal at home, though. We have become very close, my daughter, son and myself over the last several months, maybe she feels only safe with us?
Anyways, she is doing fantastic with school, and enjoys high school.
Her platelets have fallen from 403K to 253K in the last month, and her CK has gone up from 1540 to 2433 (normal being<185). I am worried that we are going into a larger flare.

God speed,
Mommymc

erinnlee
10-04-2005, 09:18 AM
If she is not feeling well enough to do things inside of class/school. How about something that she can do remotely with people she doesn't have to deal with on a physical level? I did a lot of drama. music and arts in high school, and while it is a great time, it can be taxing. But, perhaps she could help coach the drama team, which would mean she wouldn't have to be on her feet all the time, but could still interact. Or she could help draw out and plan costumes.

Or photography, perhaps? Then she might be able to get involved with the yearbook staff.

I know that a lot of girls her age have gotten into things like anime, and blythe (thisisblythe.com). There are a number of things like this she could get into that wouldn't involve a whole lot of physical interaction, but could be fun. And she'd get to interact with girls from different countries.

Does she have a pet? Sometimes that helps keep me going...

kelsmom
10-04-2005, 07:23 PM
Dear mommymc,
How are things going? Just want you to know that I keep you and your daughter in my prayers each day and hope that she is getting along okay.

mommymc
10-04-2005, 07:49 PM
erinlee:
Thanks for taking the time to share some great ideas. My daughter has always been a quite, studious girl, and this beast has basically reinforced it. I really liked the idea of photography!!! She likes taking pictures of everything in sight. I didn't even think about it. I thank you soooo much. She enjoyed doing back stage work last year (in elementary school) with a production of 'Honk'. From what she tells me, there are limited things for a grade 8 to do at school, as," the grade 12's do all the cool stuff". Spoken like a teenager, I say.
I am not sure what anime or blythe is. Could you let me know?
Thanks again, I truly appreciate the help,

EVERYTHING GOOD IS POSSIBLE :angel:
Mommymc

erinnlee
10-05-2005, 06:19 AM
Anime is a type of japanese animation. There are a lot of ways to get into it, comic books, movies, drawing styles. It tends to appeal to a lot of kids because it is fun.

Blythes are kind of a hit thing right now in the us, asia and europe. they are a remake of a doll from the 70's but have a huge following because both guys and girls alike design clothes for them, make artwork about them and photograph them (they are very photogenic, and most importantly allow you to learn a lot about photography because they don't move!). You can see one of mine in my avatear to the left.

You could try getting your daughter into a local photography class at a community center or adult education class. If she hasn't done too much of it before, I would suggest getting her a lomo (http://shop.lomography.com/shop) It's a great little tank of a camera (I have had one for years) that you can pretty much take anywhere. It uses regular film, but has a color-enhancing lens, that brings extra life into your photos and is a basic point-and-shoot, but with style! I've run into people in Washington DC, London and Italy, who stopped me on the street to say that they too had a lomo, and didn't I love mine! There is even a lomographic society (http://www.lomography.com), where you can post your work, and competitions you can enter. It's a lot of fun.

It's going to be a challenge, but eventually she'll get used to the medicines and will figure out just how hard she can push herself before getting exhausted. It took me about a year to feel like I could be "normal" again, and even now I have my good days and bad ones. But if I have something that keeps me interested and excites me, then it is easier to take my mind off it.

Good luck, and please keep us posted.

caro
10-05-2005, 06:29 PM
having been dx'd while i was in hs and very active myself i understand what your daughter is feeling. at this point she probably still feels like she can't do a whole lot. i know it took awhile til i felt like i could join the rest of the gang again. watch for how her classmates respond to the amount of school she misses and if they are saying things about it to her or if it's getting back to her in other ways. because of my weight gain with the steroids it started around my school i was pregnant and that was why i was missing school and another teacher was talking to my classmates about my illness saying i really wasn't ill even though he had been given the papaer work and had to sign a forn for the board of education. so be careful and listen to the things she says about whats going on at school. teachers and students both can be very cruel when they don't understand.
i would never say any thing to her but i try to warn parents about some of those thing because i've seen it happen with other students with other illnesses also.
i myself really enjoyed drama, chior, band(not marching), or get envolved with sports by keeping stats or as a trainer. it will let her still be part of the team and keep going and be active.
one of the other things i had a hard time with in hs was the butterfly rash accross my face. i wouldn't go to school on the days when it was really BRIGHT and SHOWY. luckily my mom and doctor understood and my doc had a friend who taught me how to do my make-up where it looked like i was wearing none and it covered up the rash. so, think about that one as she gets a little older and might get a little more self concious about what she looks like.
good luck and if i can help by remembering how it was for me to be dx'd and in hs let me know.
caro

mommymc
10-05-2005, 09:20 PM
kelsmom:
Thank you for your prayers, I do aprreciate it!! My daughter has been trying very hard the last 2 days trying to fit in by doing things that her peers are doing. She is very tired(going to bed at 6pm) but she is smiling and for that I am grateful.She has an appointment next Thursday at the Arthritis Centre for some more therapy as her MRI has shown significant change in her leg muscles. The myositis is getting worse, and this scares me to death. Next week it's blood work. Hopefully, with the Ativan, they can get a vein on the first try. On the 28th we have an appointment at Children's Hospital with the Rheumatologist and the whole professional crew. I will let you know, thank you for caring, you have really touched my heart!! :angel:

erinlee:

Thanks for letting me in on the animation. That is really neat stuff. I guess I am just out of the loop when it comes to that and many other things. I will take a look in our community centre's flyer to see what I can find for her.

caro:

Thank you for sheding some light on what I should be listening for and looking for in school. I never thought about the teachers spreading rumours. But, they are people, and people do stupid things sometimes. I guess that my daughter has been lucky in the fact that she has not had any butterfly rash. Since she was dx., we were using sunscreen all of the time. Now we have found a great sunblock from LaRoche that is purchased over the counter, and has no smell, no added 'junk' and is recommended by the Canadian Dermatologist Society. It blocks everything. So far, it is stopping the florescent light from school as well. I hope that she never developes it, but I am sorry that you have.
The problems she has with her skin is that there is black hair growing everywhere (sideburns-but no mustache), hair on her neck (front and back) and these beautiful long black eyelashes!!! I have been bleaching her facial hair and the hair on her legs and it seems to be working. We are bleaching her leg hairs as it is too risky if she bleeds from shving them.

Thank you all so very much !! You are very courageous people and I admire you!!

EVERYTHING GOOD IS POSSIBLE !!!

Mommymc

kelsmom
10-09-2005, 04:09 PM
mommymc,

It sounds like you have a courageous youngster on your hands. I'm glad she is beginning to do some things with her peers. There's an adjustment period for her and for them. As they learn more, hopefully, they will become more supportive.

I know there are some teachers who can do thoughtless things, but most are very caring and truly want to help their students with their challenges whether they are academic or personal. They, too, need educating. At the time my daughter was diagnosed, I was teaching in the same school system. As our knowledge increased and as our daughter went through one flare after another, I just wrote blanket summaries of where she was on a weekly basis, copied them, and sent them to each of her teachers. I explained the fatigue factor amd the pain she was experiencing. I also described the effort she was making to meet school expectations. That way every teacher was getting the same information. Whenever I ran across a good pamphlet or other material that I felt would help them understand lupus better, I would be sure they got a copy. Today most schools provide email access to their staff members and I would utilize that service if I were you. As a teacher, I always appreciated insights into factors that impacted my students' learning. That way I was able to make adaptations to their needs.

I hope things go well at your daughter's appointment and they can determine a treatment that will help her.

God bless.

erinnlee
10-11-2005, 08:48 AM
MommyMc,

If you thinkit would help, I have a few extra of the purple band bracelets that benefit lupus, she could pass them out to a few teachers or friends at school to help them be aware and show their support of her, or you and your family could wear them....

I think I have three adult large and three adult small left. If you want, just send me a PM and I will send them to whatever address, PO box, or wherever you want. I bought 50 of them a while back and have aready passed them out to my close friends and family, so these extras are just sitting here, not being used or worn. It might help her feel a little like she's not alone.

Sincerely,
Erinn

mommymc
10-12-2005, 06:53 PM
erinnlee:
First, you are so kind!!! I sincerly appreciate the offer of the bands. I actually have one purple, from the States, an orange one from Children's Hospital, here in Canada that says,"Lupus Loop" for the pediatric patient support, and a white one from Lupus Canada.
Since she was diagnosed I have taken them off only a few times. My 11 year old son, and husband wear them too. My daughter on the other hand, has only worn hers twice. She has to wear a Medic Alert bracelet, and says that she doesn't want to wear the 'loop'. But, because she just turned 13 in July, her ideas and thoughts change day to day. (Gotta love those hormones. Sometimes, I actually blame the Prednisone. Ha! Ha!)
Our family is going on a local Walk for Lupus on Sunday the 16th, and I will be giving some loops out to the people who have sponsored me.
Anyways, you are a very special woman, Erinn. You are an angel!!
Mommymc

mommymc
11-17-2005, 10:15 PM
Finally found something my daughter is interested in. She actually brought the idea to me. There is a Friday night club at her former elementary school put on by her 2 former teachers from last year. Although it runs late from 6:30 - 10:00pm. She is loving it. (After school on Fridays she takes a 2 hour nap so that she can go out) She is asleep usually by 7:30pm so this is a real night out.
They play board games, pictionary, watch movies and that kind of thing. Kids have to be former students of these teachers and an application had to be filled. The max of students is 15. She had fun a few weeks ago, and is looking forward to this Friday.
Thanks to everyone for all the great suggestions.
Mommymc

SoleSinger
11-17-2005, 10:49 PM
I am SOOOO glad that she found something that she likes!!

How is she feeling? Is she doing any better?

Keep us posted!

mommymc
11-21-2005, 10:40 PM
SoleSinger, thanks for the concern. My daughter is feeling better and being wy more social and active. Then, the phone call this afternoon. Rheumatology nurse from the Children's Hospital called today, about the blood work that was done on Friday. (My daughter and I spent 5 hours getting her PFT, dietician appointment for 1 hour, Rheumatologist for 1 hour, a little snack, and then some Ativan, waited about 30 minutes for the dreaded lab work. Results not in yet for the PFT, but they say they haven't seen anyone her age with such severe myositis. Her CK (muscle enzymes have flown up to 4200 and her LD is 3200. Although her platelets haven't increased much, it is still acceptable without any worries(so they tell me).
I am so overwhelemed and at wits end. I feel so helpless, so useless, I fear that depression is setting in. Why is it that bad things happen to good people? How much crap does one family have to go through?
Life is unfair.

SoleSinger
03-27-2006, 09:36 AM
It's been a while... How is your daughter doing? I hope that all is well and she is feeling better!