On April 16th we took Lilly to see the Rheumatologist, the Doctor was wonderful and asked us a million questions, looked over all Lilly test results, examined Lilly and explained to us this.... Lilly does not have Juvenile Rheumatoid Arthritis (JRA), this is good news... but she did find that Lilly has Hypermobility and this COULD explain why she is having pain in her knees, elbow and fingers.
It was a little strange to watch the doctor bend Lilly's hands to be flat against her arm, you expect her wrist to snap or her to cry out in pain, but nothing like that happened. The Doctor jokingly said she can join the Cirque du Soleil here in Las Vegas since her whole body is this way, not just parts. Lilly wants to be a ballerina and the doctor said she would do great in it and as long as she stretches first it would be good for her body.
Lilly will require Physical Therapy to help provide some strength to the joints to prevent injury and hopefully easy some of the pain. The Doctor suggested water therapy and regular Physical Therapy, we will be starting that soon.
On April 22nd we then went to see Lilly's Oncologist Dr. Waseem, we went over what the other Doctor had said and he informed us again that the Hypermobility might be causing the joint pain, but its not for sure because of the times she is having the pain doesn't always go along with the pain of hypermobility.
He also told us that since the High Inflammation levels in her body and the fact that her body is in a constant state of fighting infection which is therefor attacking itself as shown in her blood work is not associated with JRA that we still have to address what is going on.
During Lilly's examination, it was found that she has 2 new lumps in her neck, the original lump found in December on the left side of her neck has not gone away and seems to be the exact same size and now on the right side of her neck they found 2 new lumps! Dr. Waseem ordered a complete neck ultrasound to see what is going on and to also prepare for a fine needle aspiration in the near future.
They also asked for a urine sample and took more blood, they are running more test.. on what I can not say other then I do know one of them is for Cat Scratch fever.
We will have the results in about 2 weeks... If they still do not find answers in the latest blood work we will proceed with the fine needle aspiration to get a biopsy done of the lump in her neck, but it will be done until after our next follow up appointment in 2 months.
Why you may ask will it be so long until we do the biopsy, the doctor want to see her in 2 months to see if there is any change in the lumps, his hope is they will start to shrink on their own and also this is a big step.
It was a little strange to watch the doctor bend Lilly's hands to be flat against her arm, you expect her wrist to snap or her to cry out in pain, but nothing like that happened. The Doctor jokingly said she can join the Cirque du Soleil here in Las Vegas since her whole body is this way, not just parts. Lilly wants to be a ballerina and the doctor said she would do great in it and as long as she stretches first it would be good for her body.
Lilly will require Physical Therapy to help provide some strength to the joints to prevent injury and hopefully easy some of the pain. The Doctor suggested water therapy and regular Physical Therapy, we will be starting that soon.
On April 22nd we then went to see Lilly's Oncologist Dr. Waseem, we went over what the other Doctor had said and he informed us again that the Hypermobility might be causing the joint pain, but its not for sure because of the times she is having the pain doesn't always go along with the pain of hypermobility.
He also told us that since the High Inflammation levels in her body and the fact that her body is in a constant state of fighting infection which is therefor attacking itself as shown in her blood work is not associated with JRA that we still have to address what is going on.
During Lilly's examination, it was found that she has 2 new lumps in her neck, the original lump found in December on the left side of her neck has not gone away and seems to be the exact same size and now on the right side of her neck they found 2 new lumps! Dr. Waseem ordered a complete neck ultrasound to see what is going on and to also prepare for a fine needle aspiration in the near future.
They also asked for a urine sample and took more blood, they are running more test.. on what I can not say other then I do know one of them is for Cat Scratch fever.
We will have the results in about 2 weeks... If they still do not find answers in the latest blood work we will proceed with the fine needle aspiration to get a biopsy done of the lump in her neck, but it will be done until after our next follow up appointment in 2 months.
Why you may ask will it be so long until we do the biopsy, the doctor want to see her in 2 months to see if there is any change in the lumps, his hope is they will start to shrink on their own and also this is a big step.
Other news, I am leaving my day job... this was a hard choice that David and I had to make, I love my job at Colonial Property Management, but Lilly is not able to attend school right now (Germs), she will need Physical Therapy and we have a long road ahead of us, she needs here mommy at home with her. The loss of income sucks big time, but I have taken on another at home job, so I be working, just a big reduction in hours. My last day will be May 16th.
What is joint hypermobility syndrome?
The joint hypermobility syndrome is a condition that features joints that easily move beyond the normal range expected for a particular joint. The joint hypermobility syndrome is considered a benign condition. It is estimated that 10%-15% of normal children have hypermobile joints or joints that can move beyond the normal range of motion. Hypermobile joints are sometimes referred to as "loose joints," and those affected are referred to as being "double jointed."
Lilly and Daddy enjoying the view
Lilly's new doll a gift from Dr. Waseem
Lilly getting ready for bed, displaying her flexibility, she is silly!
Thanks for the update! At least now you can make some games out of it with the stretching, water therapy, etc. bring some cause into the area and remove some effect. She can have some fun with that. :) Love that first picture of Dave and Lilly in the window. Precious!
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