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» LymeNet Flash » Questions and Discussion » General Support » Toddler Contracts Rheumatoid Arthritis???

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Author Topic: Toddler Contracts Rheumatoid Arthritis???
DJP
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This was in a local paper. How does one know they have RA?? Is there a test? Isn't that what all the kids in Lyme CT diagnosed with when they discovered it was Lyme. http://www.telegram.com/apps/pbcs.dll/article?AID=/20050703/NEWS/507030822/1008/NEWS02
Posts: 441 | From USA | Registered: Jul 2004  |  IP: Logged | Report this post to a Moderator
Carol in PA
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DJP,
Can't read the article unless you subscribe.

Carol


Posts: 6947 | From Lancaster, PA | Registered: Feb 2004  |  IP: Logged | Report this post to a Moderator
Kara Tyson
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There are several types of arthritis.

RA is considered to be an immune disorder.

9 out of 10 people have an increase in ESRate (the rate at which blood cells settle at the bottom of a test tube). But that is not a foolproof test.

70% of people have certain antibodies in their blood (RA factor). But this is also present in people with Hepatitis.

Some people have anemia and some people have low white blood cell counts.

**
As usual, testing in never 100%.


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DJP
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MILLBURY-- The first sign came in October. Christa Rebidue noticed an awkward gait to her 2-year-old daughter's run: Dylann was favoring her right leg. Then a month later Dylann began to limp, but Mrs. Rebidue chalked it up as a minor injury that her spunky, unstoppable toddler got while playing.

Dylann's limp grew worse over the next few days, until she was in so much pain she did not want to walk. Dylann's spirited personality changed just as quickly. She became subdued and would cry to be picked up.

Mrs. Rebidue and her husband, Mark, took their daughter to her pediatrician, and the early diagnosis was that it was the typical growing pains of a 2-year-old.

But when the pain didn't go away, Mrs. Rebidue, a physical therapist, pushed for more tests to explain the swelling in her daughter's right knee. Mrs. Rebidue expected the worst, knowing that inflammation can be a symptom of cancer.

A blood test brought relief, and a new round of panic: Dylann's test came back ``slightly positive'' for arthritis. The specific diagnosis was pauciarticular rheumatoid arthritis, which affects four or fewer joints.

``How does a 2-year-old get arthritis?'' asked Mrs. Rebidue, recalling her reaction to the diagnosis, which came just days before Dylann's birthday in November.

As a physical therapist, Mrs. Rebidue works with geriatric patients afflicted with arthritis, and she knows of the disfigurement that can come with the affliction. She knows of those so crippled by pain and stiffness that they must use a wheelchair.

``When she got diagnosed, I felt lost,'' Mrs. Rebidue said. ``No one knew anything about it.''

Juvenile arthritis affects more than 300,000 children in the United States, 3,000 of them in Massachusetts. Nationwide, the number of children suffering from arthritis exceeds the number of children who suffer from juvenile diabetes and cystic fibrosis, according to the Arthritis Foundation. Juvenile rheumatoid arthritis -- or JRA, for short -- is the most common form of arthritis found in children but is difficult to diagnose.

``Kids don't usually present with pain, but with limping and swelling'' said Dr. Jorge Lopez, a pediatric rheumatologist at Tufts New England Medical Center Floating Hospital. Dr. Lopez is treating Dylann.

There are three types of JRA. Systemic JRA presents with a rash and fever, and is usually treated with steroid pills, which can have some side effects: polyarticular onset JRA, in which more than five joints are affected; and pauciarticular onset JRA, which usually affects the knees and ankles, often on one side of the body.

Pauciarticular JRA also has the highest risk for developing a chronic eye inflammation called uveitis, which can lead to blindness. It is a condition occurring commonly in young girls, Dr. Lopez said.

Dylann has her eyes checked every three months, and so far there has been no indication that her eyes have been affected.

Dr. Lopez said about 80 percent of kids with JRA outgrow the condition.

``The big question is how to determine which kids fall into which category,'' said Dr. Lopez. ``We're not that smart yet.''

Dylann's condition is now chronic, less acute than when she was diagnosed. Doctors prescribed anti-inflammatory medication, but none of it has helped, Mrs. Rebidue said. The only thing that brought Dylann any comfort was warm baths; she would take two or three a day. Dylann's pain got so severe that on some days, she would not start walking until midafternoon.

In January, Dylann began working with Patricia S. Grenier, a physical therapist from Criterion Valley Early Intervention in Milford.

At that time, Dylann was having difficulty moving in and out of certain positions, and was unable to puruse normal 2-year-old playtime activities, such as jumping, and riding her bike.

``She was unable to bend her knees and sitting like a pretzel hurt her,'' Ms. Grenier said. ``She compensates really well. She could get up and stand without bending her legs.''

To treat Dylann, Ms. Grenier had to get her to say where she hurt and then tailor a play activity to work that area.

``A lot of this is play,'' Ms. Grenier explained.

``Once you know the clinical piece,'' she said, ``you can figure out a play position.''

A lot of the therapy is outpatient-based. Ms. Grenier's sessions with Dylann have become less frequent as the child's condition has become less acute.

``You are treating them where they are,'' Ms. Grenier said. ``You look at their home, how they use the stairs, how they play and you incorporate all of that.''

Dylann's therapy is tailored to her. The goal is to fit Dylann's treatment into the family's life, Ms. Grenier said. Rylie, Dylann's 4-year-old sister, has also been doing her part to help her sister, and Dylann often visits the playground with her father.

Ms. Grenier also would work with Dylann in the heated pool at the Whitin Community Center in Northbridge.

In February, Dylann was given a steroid shot, and the next day the precocious toddler's personality returned.

``She was in a lot of pain. I had no idea she was in so much pain, and that it could affect her personality the way it did,'' Mrs. Rebidue said.

Dylann has been chosen by the Arthritis Foundation to be the 2005 Worcester Arthritis Walk-Run Ambassador.

The Arthritis Foundation is a nationwide nonprofit health organization leading efforts to prevent, control and cure arthritis and related diseases.

Today, the prognosis for children with juvenile arthritis is better than it has ever been, partially because of continued research, according to the foundation.

As ambassadors, Dylann and her family will help raise awareness of juvenile arthritis and the Arthritis Foundation.

The Sept. 18 Walk-Run is a noncompetitive 5K course that loops around Indian Lake.

The Rebidues' team is called Dylann's Dreammakers.

For more information on JRA or the walk, visit www.arthritis.org.


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janet thomas
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I spoke by phone with this child's mother. She was tested for Lyme by the ELISA and it was negative. I gave her mdl and igenex info and this site's address. Let's do our best to help her if she visits.
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Lymetoo
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Good job, janet! ELISA....why don't they just throw the $%*# out!? I'd put LOTS of money on this poor child having Lyme instead of JRA!

3,000 cases in MA, huh?! What a coincidence!

Hopefully the mother will have the child tested by Igenex and find out the REAL story. Then the child can get WELL!!

------------------
Do not take anything I say as medical advice. I am not a doctor, but I DID stay at a Holiday Inn Express!
oops!
Lymetutu


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bg
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Quite the story; thanks for posting it in full text.

My late Dad had JRA, juvenile rheumatoid arthritis too starting around age 7. During his lifetime he had 2 rare diseases where he paralyzed from the neck down, but came out of it. I'm convinced now that he too had LYME disease all his life and never treated for it.

bettyg


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