Saturday, December 20, 2008

You've got High Fever

there's a winter advisory issued for our area for the next two days. highways are shut down. there is snow on top of ice out on the roads.

its a great time for a high fever in a 3 year old with childhood arthritis!

last time Charlotte got a high fever was in June & it spiked so fast it caused a febrile seizure. the roads were going to be a challenge, but with the weather not getting any better & her sister being diagnosed with strep 48 hours prior, i thought we better get in & be seen.

i had been double dosing (motrin every 6 hours, tylenol every 6 hours, so some form of pain relief/fever reducer every 3 hours) & i think that helped tremendously. she was interested in fluids & food too. its just that it was sooo high, 103.

we had the ER to ourselves today at Emanuel in Portland, we got in around 1030AM & we were out by 1pm. Saw some nurses that i recognized from when we were there 2 months ago getting Ellie's stitches (that's always fun to see people you remember & they remember you!).

Diagnosis: ear looked a little irritated so we went home with a prescription to Amoxicillan (again). heart/lungs sounded good. keep her cool & hydrated & double dosing. She still might seize if the brain needs a reboot & to call 911 at that time if she does & they will walk me through what to do.

Tonight she is looking MUCH better & sounding better too. She is talking (& not hallucinating / crazy talk that she had this am).

Now maybe the flair in the ankle was the 1st sign of this illness coming on?! Virus's can really whack out the arthritis in the body....

When we told Charlotte that we were going to the hospital this morning she started screaming & getting mad. 7 year old Emma asked, "Why does Charlotte talk about the hospital so much & get mad about it?!" I think its time to take her to a remicade appointment so she can have some empathy for her sister. maybe we have sheltered the sisters too much, maybe they need to SEE it to understand it....

Well more blizzard like conditions overnight & into Sunday. We are highly medicated at our house so all is well if we are hunkered down "for the winter." :)

Thursday, December 18, 2008

Schooooool's out. for. WINTAH!

Snowday #3 & its official - we are being given an early Christmas vacation. Today was the best snow of all & I was soooo psyched to get the girls on the sleds with the neighbors (& the neighbors were over at 9am psyched TOO!), but I knew I had to get Ellie to the pediatrician, because she hadnt talked in 4 days & that's not normal. She usually is up ready to rock in 3 days after being sick. Emma had bounced back, Charlotte was fine, so it was time for Ellie to be back in the saddle.

The snow came down hard & my mom was worried about the roads, but we made it to their house, dropped off Emma & Charlotte & headed into Portland where the roads were fine. She was positive for STREP THROAT & both her pediatrician & I happily thought we scored with that diagnosis. He siad, "YES! we can treat THAT!"

Then he started asking about the sisters, when was Emma's fever, when did Charlotte have the ear infections. The amazing & cautious Dr. he is, he suggested I get the sisters & bring them back for a lab to make sure THEY dont have it.


UGH! Back to WA, get Ellie's meds & some yogurt, get the 1st dose down her, drop her off w/ Marmee, pick up Emma & Charlotte & Poppa & head back into Portland. Quick trip, but one that was taking time off our sledding clock as the good snow was starting to disepate.

They were negative (yay & assumed so), so back to WA where the girls had about one more hour of sunlight.

On went the snow gear, gloves, boots, hats & off they went to find the neighbors to plead them to come back out (after I am sure they were out ALL DAY!) for 'their turn' at the slopes (ie driveways).




I was shoveling the sidewalk (because I love our Fed-Ex & UPS delivery people!) & Charlotte pointed to her foot & was crying, "I hurt." I didnt see anything happen so I internally said Uh Oh & then went on with stuff & told her to shake it off, or something to that affect.

After dinner I got up on youtube to process her recital videos from Tuesday. Then I see it, her babying her ankle & then pointing to it & complaining to the teacher.




So I give Ryan the heads up on the puzzle pieces of what I heard/saw & ask Charlotte to sit in front of me so i can compare the ankles.

One is swollen on the top & puffy to the touch.

How? How on 200mg of Remicade & .5mls of Methotrexate can a child have a flair up of Arthritis?! UGH IT ANGERS ME!!!!!!! I punched my fist into my hand & thought of my gameplan. I was blank.... 2nd opinion call goes into Cindy who simply reminds me of the "team" we have in place, ask our Pediatric Rheumatologist.

Ya, that's a duh but I think when you are thrown off your game, you kinda blank. So a message is into the good dr. to see what he thinks & if he wants to see her. Could it be a flair due to the ear infections? The cold? Her sniffles? Will wait to see what he thinks....

Meanwhile, the amoxicillan is back in the house. This time for Ellie, mixed berry flavor, "I only like grape." Not the best patient in the house that's for sure :) So 10 days of griping & complaining from a 6 year old who has NO IDEA HOW GREAT SHE HAS IT is going to be dreamy right?!?!?!? :) hahahha!!!

Sunday, December 14, 2008

Arctic Blast 2008

As my girls get bundled up to welcome the snow, I have time to reflect on December Remicade day that happened on Thursday. 1st, the snow: yes, in the Pacific NW the newscasters love to be dramatic & we have the news going on downstairs & up to echo the reports from all over the Willamette Valley (who doesn't see severe winter weather too often!). Its below freezing right now, and the snow is coming down in a flurry, so nothing really to sled on yet.... the girls are WAITING!

December Remicade day: Just Charlotte & I because our timing had gotten changed & that messed up work plans for Ryan & friends plans for my parents. I said "NOT A PROBLEM! we can do this on our own!"

She finally figured out where we were going when we pulled out of the driveway & she started crying, "I don't want to go to hospit-pull." scream, cry, cry, cry, scream. So off to starbucks for the hot cocoa & momma's venti coffee (yep, on a day like today, i needed a little artificial strength). Oh & lets get you that cute mug you are asking for... oh & cookies? Sure, I am not feeling guilty at all!

On our way in, Charlotte's mood changed & she became comical. Telling me jokes that today was the bridges birthday (we cross a few bridges to get to the hospital), oh no, its the car's birthday (laugh laugh laugh). Ah.... ok this is better.

So we get in to the Day Treatment Center, set up our bags, get our toys out ready to go, get our movie out.... I had some new toys today (i keep a tote in my office called "hospital toys" that get pulled out just once a month & I have a few new things in there that I pull out one @ a time).

No more numbing cream. No more benedryl. And this girl is GOLDEN! The injection went in by Nurse Priscilla (who is a dreamboat & knows Charlotte's arm SOOOO well now) in 2.2 seconds! it was done! Even Charlotte moved her head around and looked at her arm and asked, "no blood?" NOPE! Because you didn't throw a fit & pop your iv out!!! Thank you for not using your superpowers to blow it out.

Then our angels came - Dawn & Cindy hung out all morning with us! CHARLOTTE LOVES these two momma's! Loves, loves, loves them! She played polly pocket with Dawn & little people with Cindy. I appreciate them so much! (see the bag of cookies that Cindy brought? Yummy new seasons chocolate chip - i don't think i have ever made or tasted a yummier chocolate chip cookie)!

Darn IV kept kinking. Lesson learned - TIGHT TIGHT TIGHT tape on the stint. Charlotte gets pretty active & likes to play while we are there & that little iv is soooo teeny, it gets kinked easy. So we were out of there 4.5 hours later, but I think it would have been sooner a) if we would have gotten the meds on time & b) the tape was tighter on the stint to not kink.

Now we head into '09 Remicade months. Which means, doing 1 remicade treatment every 4 weeks for 2 years (Dr. Foster's direction), gives us 15 more to go.

Request: I need a good mantra, a healthy positive mantra when I am driving into the hospital with Charlotte. I found myself saying to myself, "this sucks... ugh this sucks." I realized I was saying that I was frustrated with myself. And turning it around to "We have to do this, this is the right thing" just wasn't working either. Also what didn't work was rationalizing it to "We are keeping her healthy." nope wasn't working. Any advice for a good mantra?
PS - this is her pillow, we always bring her own pillow to the hospital. We have a furry pillowcase on there from Pottery Barn Kids, so its nice & soft & she cuddles up on it when she watches her movies. These days do wipe her out. But the next days, its like Kelly (a JRA High Schooler) said, its GO JUICE! Charlotte is now on the GO!! And in great spirits & eyes are clear.

Wednesday, December 10, 2008

December Remicade

Thursday, December 11th - Remicade Day! Think positive thoughts for attitude, acceptance, good veins :)



I do feel extremely grateful for the beauty that surrounds our home. Every day, I get to see the mighty Columbia River (on the right of those trees) & on clear gorgeous days like today - Mt. Hood, home of Timberline (summer training for all Olympic skiers!), ski resorts such as Mt Hood Meadows & Hoodoo. Just beautiful! The snow is supposed to be coming this weekend!

Tuesday, December 9, 2008

2008 Jingle Bell Run

This year's Arthritis Foundation Jingle Bell Run was practically tropical! Here's Tottie's Team + add 7 more people including grandparents, aunt, teacher, friends = LOTSA love & support! It was great! I proved, once again, that I cannot talk about childhood arthritis without emotion, so the words that I dream of saying to folks never get said. Hopefully they just understand the heart of it - "Thank you for coming today & celebrating mobility & the spirit of the holiday season!"
At the starting line is: Laura & Gianna, Tara & Josie, Me+Ellie+Emma, our sweet friends Ellie+ Emma :) and Laura+Jim+Connor+Addison!
There's Charlotte! Josie, Charlotte, Ellie, Emma, Ellie & Emma. The big blowhorn went off & Charlotte burst into tears. Daddy came behind us with the stroller to pick her up so I could run with Ellie. Off they go! I love Connor in this picture - see him in black at the front?! 1st race!!! 1st race for Gianna & Josie too! Very proud of them!!Emma in green!And here's Ellie!

After the kids 1K, we did the 5K & Charlotte fell asleep snug in her stroller. :) Ryan ran in 32 minutes & felt great! Fantastic turnout in Portland! It was the kickoff to our holiday season for sure & the abundance of presents: support from family & friends wrapped in jingle bells! Thank you!!!

Sunday, December 7, 2008

The Power of the Card

Lara Blair took amazing pictures of the girls that completely captured their personalities! She put it into a card & got them out last week (some folks consider this early?!?!) & our card was the 1st holiday greetings to arrive at the Miller house.
Little Drew carried it around all day & then insisted on taking it to bed:

Breakfast with Santa

Breakfast with Santa at "AROUND THE TABLE" restaurant. Yummy foods, warm & cozy atmosphere, great friends (not even planned!) & wonderful surprise seeings (Miss Lara Blair & PHE friend Tammy!) along with talking to Santa!

Probably the last year for matching dresses, it wasnt an easy feat to accomplish this year. I will keep trying though :) I was just so happy that Charlotte was coaxed to sit on his lap.... AND smile?! WHOA!!!! Stinker!Nate & Blake Bell - our sweet friends! They made it a very special morning! Last year we were at a different "breakfast with Santa" & Blake & Nate (with their parents) show up, unplanned aGAIN! Great minds think TOTALLY alike :) And its a great surprise to spend the morning with friends!
Future prom dates? Blake & Ellie were at preschool together, now both kinders. Emma & Nate were in kinder together, now both 2nd graders.
Now what the heck?!!?

Wednesday, December 3, 2008

3 posts in a day - eye update

  • Eyes are clear. Go in for Remicade December on the 11th.
  • Emma & friend dissed me on the art project. They wanted to "play" or something crazy like that... what are they 7 or something?!
  • Dinner ideas? I have none. I am slowly.getting.tired.
Gnight... :)

The Ears Have Wordless Wednesday

The dr. doesnt think Charlotte got over the FIRST ear infection since she's only been off of amoxicillian for 2 weeks. So its on to bigger stuff.

Automatically the Dr. turns to azithromycin. Plugs it into her laptop & oops... it has a reaction with Methotrexate. "yes, and she's on remicade too." Dr. says, "oh the remicade shouldnt be a problem... but hmm.... this reaction with methotrexate... ok lets find something else...."

So lets go with Cefprozil. Seems that doesnt have a reaction. Its orange, not pink. Yikes... we like pink....

But the amazing girl she is "Hey Charlotte, time to take the meddy" & she comes runnin with mouth open. THANK YOU GOD!!!

Dr. said to continue Motrin tonight cuz this might not kick in /in time. I think she could see I was lacking some Zzzz's after being up at 4am with Charlotte this morning! "But hey my blog got update! Riots in the streets can stop!" :) HA HA HA HA!

Now off to the eye appt!

1st, its Christmas Card making with Emma & her BFF - leading 2nd graders in craft projects is a blast, we can get more complicated! They are making cards out of OLD cards for teachers & their friends - yes, that's what happens to your cards if you dont send me pictures of you or your cherubs!.

Where does the time go?

I know, I have been hearing it lately! "Why isnt the blog updated, what's going on wtih Charlotte? Where have YOU been?!"

1. It hasnt been updated because I am trying to simplify daily living & that means some days the computer does not get turned on (becaues I know my weaknesses and its called blog & facebook & CNN! & its like a timesuck, before I know it children are eating out of Skippy Jars, and dirty diapers are all over the house.... TEE HEE! Just kidding :) There's no skippy bought here & no one is in diapers!). Simply living has meant also going through "stuff" realizing what we dont NEED, what we need to get rid of and living within a budget. Big Sigh... all takes time! And we are continuing to work on it this month....

2. Charlotte has her eye appt today. We are up this morning at 4am becaues I think she has another ear infection. We both came down with head colds this weekend after turkey day. :(

Charlotte: "I need to see Dr. Schunk (pediatrician). He needs to fix my ear."
Me: "That means the pink medicine. Right? You ok with that?"
Charlotte: "Ya, I need it to fix my ear."

Remicade December will happen next week. The eye appt is today (every 4 weeks before remicade to make sure remicade is holding it).

Remicade Novemeber was my 1st jaunt as a single parent. My mom came to help (yay!) & it was Charlotte's 1st time w/out benedryl & it made a WORLD OF DIFFERENCE! She was a completely different girl! Nice, talking, playing all morning long!

3. Where have I BEEN?! Well gosh...Here, there & everywhere I guess :) After the last post of football saturday, Ryan & I left for Costa Rica for a week without the girls & puppy. it was a good little adventure but we sure missed the girls BIG time. We came home just in time for turkey day which was YUMMMMEEE & my little "what can i do to help cards" worked FABULOUSLY! I am now whipping out some Tottie's Pretties just in time for the big Camas 1st Friday! There will be a tree lighting ceremony & I hope that the community is out that night!
These boys were NOT in Costa Rica with us - this was the last Beaver home football game against the University of Oregon where the Beavers LOST & lost their hopes & dreams to go to the Rose Bowl. Its still too sensitive to talk about :) Ryan with his fraternity brothers:What's next?
Sunday is the Arthritis Foundation Jingle Bell Run! Charlotte is a grand marshall so I hope to have the amoxicillan kicking in by then :) TOTTIES TEAM is almost complete & we will have a fun group with us this year. I am excited to see her run the kids 1k w/ Emma & Ellie & with all her grandparents there, her aunt/uncle & friends, its going to be a very fun morning (And think DRY! Dry makes all the difference!!) :)

Saturday, November 15, 2008

This is what Saturday's are about!

It's Beaver Football Saturday, Beaver Fans!! Get out your orange & black & hit the road - a 2 hour road trip south from our house, down to Corvallis OR, home of the Oregon State Beavers!

A quick trip to Starbucks for some goodies before we drop Charlotte off at Marmee & Poppa's. 3 years old is a hard age to enjoy a football game! But soon enough....Tailgating with Grandpa:


...and sometimes Uncle Tyler (who comes up from San Francisco). (Gotta get Uncle Tyler a new Beaver hat!)
Stand Up, Sit Down... FIGHT FIGHT FIGHT!Sometimes the Beavers can be exasperating!
Our view from our seats. Oregon State Beavers played the California Bears today!
Yikes, it was a nail biter up until the last few seconds!!

Final score: Oregon State Beavers 34 California Bears 21



Sunday, November 9, 2008

Turkey & Ears & Headbands, OH MY!

1. Turkey
I am getting organized for Thanksgiving. Not only the meal but the day itself becaues I love this day, I love the food, I love GOOD food & I love sitting & enjoying meaning of the meal! Last year, I went to Williams-Sonoma two Sunday's in a row to learn techniques on turkey making & with the help of their apple brine & compound butter, it came out moist & OH SO TASTY! And the classes were FREE!


My friend Krista Colvin, an organizing & lifestyle motivator, has come up with some REALLY great tips for me this year that I am totally incorporating into our day! See her ideas on our local morning show: http://www.katu.com/amnw/segments/33758474.html

2. Ears
sigh.... Starting around 5pm yesterday, Charlotte said, "Momma, my ear hurts! Can you get it out? Look in there, can you get it out?" Get it out? That's a new one. Now mind you, I first thought she might be hallucinating or going through some wierd concussion thing because 30 minutes prior to the ear talk, she got on her bike without any supervision and thought she would ride it DOWN the driveway. Yes, we have a slight incline in our driveway, so our girls are told to walk their bikes DOWN to the sidewalk & then start riding. I think this will be the last time Charlotte decides to coast downhill, because she picked up speed, went past the sidewalk, through the street (thank goodness we are on a deadend w/ only 17 houses in our neighborhood) & hit the neighbors driveway & went head over handlebars. A nice strawberry is on her forehead but that's IT, THANK GOD! Seriously..... oye vey! SO... back to the ears.


Charlotte is asking for "meddy" - so why not?! Here's some motrin. But like clockwork, about 6 hours later, it wore off (@ 11pm) and she was crying. Its the earache cry, you know the one of the whining (i think it gets its own category).... yep... so off to the Dr. today (love that they are open on the weekends) & now she's on some drugs for that & is now napping on my bed. Good news, she can still do her remicade treatment in 4 days. Learned lesson for mom & dad: She now tells us when she's in pain & can be very descriptive about it. And we are paying attention because of her story. I love the verbal's though, can I tell you!?
It's a new experience for us to have her be so descriptive in her pain...
3. Headbands
My supply is restocked with some CUTE, cute, cute new ribbons, flowers & bows! Oh my goodness there's some cuteness here with fresh, brand new looks. I really love the christmas bands & have even made some gold & silver ones that are especially glitzy! I think they can go all winter long! The all red ones are so cute & could be worn for every national holiday, Valentines & Christmas! This red ribbon is stitched in white which adds just a little something to it!

I have been invited to bring the bands to downtown Camas for "1st Friday" on December 5th from 3-9pm. I am so happy to be a part of a fun evening for families, celebrating the season & memory making!

I have got the etsy site UP & running. I struggle with it because inventory changes so fast because I dont like to make "20 animal print w/ black bow." I like unique, different, 2 here, maybe 3 here. Classic tone on tone, I do my best to keep those stocked. But the best way is to say, "Pink!" and then then I have about 15-20 options just in the pink department that I can snap pictures & send! What's your color? I can do that!

http://www.tottiespretties.etsy.com

Thursday, November 6, 2008

Arthritis in children gets ABC exposure

Our friend Jacob, is featured today on ABCNews. I call Jacob our friend but we have never met face to face. I found his blog written by his mom Joanne, when I was looking for uveitis information. Jacob sees Dr. Stephen Foster in Cambridge for his uveitis condition & that's when Joanne & I started conversing. Joanne has three boys, I have three girls. In Joanne's house, they are all about the mud & outdoors! AT our house, its all about the dolls & bows. Jacob is older than Charlotte & therefore is able to speak about his pain & Charlotte is trying to figure out who she is at age 3. But we both have children with arthritis & we have learned, consoled & shared with each other in our common world.




Before I even read this article tonight (about older children with arthritis not wanting to share with their peers), we were talking at the dinner table about something that triggered us to jokingly say to Charlotte, "Oh what because you have arthritis?!" And we all laughed (insinuating that she cant get away with things "just because" she has arthritis). Charlotte said, "I dont have arthritis." "You dont?" "Nope..." and then something else happened & she said, "Oh i DOOOO have arthritis!" I said, "Oh NOWWW you want to claim arthritis huh!?" She shook her head yes. Does she even know what we are talking about when we joke around?!



Hopefully her experience with this disease will be a non-issue since she has had it for as long as she can remember. I hope Charlotte is so ingrained about me sharing with others about her arthritis that she too will want to share & educate & talking about it will be a non-issue!
Children Suffer Arthritis in Silence
Children Keep Silent About Juvenile Rheumatoid Arthritis

By LARA SALAHIABC News Medical Unit

Nov. 6, 2008

Nine-year-old Jacob Martin of Dracut, Mass., has trouble sitting still during group time in class.
At first glance, this may not seem out of the ordinary. But while Jacob appears to be a typically restless fourth-grader, his experience stems from a condition that is more commonly associated with his grandparents. Jacob has arthritis.

Jacob's legs stiffen and swell as a result of polysystemic juvenile rheumatoid arthritis, a kind of arthritis that causes damage to numerous joints and tissues in children. But his mother Joanne Martin said he refuses to tell his teacher that he feels uncomfortable and endures the pain anyway.

"Anytime the situation comes up, I tell him it is OK if the other kids know," Martin said. "But he doesn't want to be the center of attention."

Jacob is one out of an estimated 294,000 children in the United States who have been diagnosed with a rheumatologic condition, according to a 2007 study by the U.S. Centers for Disease Control and Prevention in Atlanta. And, like Jacob, some children choose to keep silent about their diagnosis.

The exact causes of juvenile arthritis remain unclear, but researchers believe that like its adult counterpart, the condition arises when the body's immune system malfunctions, damaging the body's own tissues. In many cases, effective treatment is available in the form of anti-inflammatory medication, physical therapy and exercise.

But unfortunately, while children were once thought to outgrow the condition, evidence suggests that the disease may recur and endure long into adulthood, said Dr. Egla Rabinovich, co-chief of pediatric rheumatology at Duke University in Durham, N.C.

Lying to Keep the Secret
Although some of these children use secrecy as a tactic to feel normal, Rabinovich said, those who keep it to themselves may, ironically, find themselves feeling socially isolated.

"Kids can be very secretive about their diagnosis," Rabinovich said. "They may lie to their friends about why they cannot participate in physical activities, and eventually one lie can lead to the next lie."

Dr. Robert Sundel, director of rheumatology at Children's Hospital Boston, said parents should leave it up to the child to disclose their diagnosis to their friends.

"Initially, they need to accept it first, but the reality is it can be months or years that they won't want to share with anyone," Sundel said.

Elizabeth Murphy-Melas, author of the children's book "Keeping a Secret: A Story About Juvenile Rheumatoid Arthritis," said, "A hurdle children with arthritis have is acceptance [by others and of themselves] while maintaining self-esteem."

In her book, the main character, Jennifer, learns she has juvenile rheumatoid arthritis after she finds herself struggling to play soccer. Despite her mother's encouragement, she hides her diagnosis from her friends, and instead lies about her condition. But Jennifer is relieved when she is finally able to reveal why she is not able to participate in physical activities with her friends.

Murphy-Melas said that while the use of excuses may be one way to keep a secret, her book is about the stages a child may go through in accepting his or her diagnosis.

"Jennifer waited and told her condition on her own terms," Murphy-Melas said. "Children with arthritis should be able to tell friends about the disease when they're ready, and on their own terms."

Finding Someone to Tell
As debilitating as juvenile rheumatoid arthritis can be for a child, some learn to overcome their silence about their diagnosis with the help of their parents who have also been diagnosed with rheumatoid arthritis. Although exact numbers are unknown, a minority of children with arthritis have a parent who is also affected, Duke's Rabinovich said.

But such is the case with 15-year-old Oscar Seman, who has polysystemic juvenile rheumatoid arthritis and whose mother Pam Seman, 48, of West Hills, Calif., also has rheumatoid arthritis. Seman said her son, who was diagnosed three years ago, is selective with whom he shares his diagnosis because he fears some will not believe him.

"Oscar will run, ride a bike and play with his friends," she said. "When I pick him up, he will try hiding his limp to the car and he will cry afterwards because he is in such pain."

Seman said she understands that her son may feel excluded from other teenagers because of his arthritis. Seman, who was diagnosed in her 20s, also tried not to let her arthritis limit her physical activity. She sometimes ignored symptoms and would skip taking her medications.
While the long-term effects of those who keep their diagnosis a secret have not been studied, Rabinovich said that in her experience, those individuals are more likely to ignore medication and perhaps other recommended treatment.

"Today, juvenile arthritis is manageable in that children with arthritis are physically indistinguishable from others," Rabinovich said. "Those who are in denial of their diagnosis will miss opportunities to help themselves."

Rheumatologist Sundel agreed, adding that arthritis treatment has helped children overcome the physical differences of the condition.

"Usually, within six to 12 months, some cases of newly diagnosed arthritis are controlled," Sundel said. "So keeping it a secret in the beginning may not have any physical ramifications in the long run."

Although Oscar does not respond to his doctor's recommendation to communicate his diagnosis with others, Seman said her son has now opened up about his experiences with her.

"With Oscar I would say it helps him that I have it, too," she said. "Because he sees in me what it will be like in the future -- I am living with it and I'm doing OK -- he'll talk to me about that."

While talking to a parent may be one step toward accepting the disease, Rabinovich said communicating with a close friend in the child's age group will offer another level of understanding, both from the peer and affected child.

"In general, the message is that secrets lead to bigger secrets and a child can find themselves very isolated without support for their condition, Rabinovich said, adding: "I think they would be surprised how much support their friends would give them if they only knew."

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