WAG Rough Day

[Amanda]

I am so sorry to hear this. One of my dd's also has Juvenile arthritis- diagnosed at 4- and uveitis (eye inflammation associated with arthritis.) It's been rough at times. It's so hard to weigh all the pros/cons of activities, dietary changes, and medication. My dd's joints are quiet right now, but there is always the lingering fear that she will have a flair. She is on an immune suppressant for her eyes that has worked well- and maybe helping her joints as well. We are thinking about slowly tapering down and it does make me nervous for the possible impact on gym. I do think having a pediatric rheum. involved in her care will be really beneficial. Sounds like you have some good alternative care as well! I hope you get some good answers and help soon.

 

[tpMom]

I am so sorry to hear this. One of my dd's also has Juvenile arthritis- diagnosed at 4- and uveitis (eye inflammation associated with arthritis.) It's been rough at times. It's so hard to weigh all the pros/cons of activities, dietary changes, and medication. My dd's joints are quiet right now, but there is always the lingering fear that she will have a flair. She is on an immune suppressant for her eyes that has worked well- and maybe helping her joints as well. We are thinking about slowly tapering down and it does make me nervous for the possible impact on gym. I do think having a pediatric rheum. involved in her care will be really beneficial. Sounds like you have some good alternative care as well! I hope you get some good answers and help soon.

So is your daughter in gymnastics even with arthritis? I have been trying to find examples if gymnasts who have joint issues but it's been hard to find! What level is she in, has she had to modify her training at all? I just emailed my daughter's coach explaining what is going on and asking if my DD can stay on the team but take days off if she's feeling bad. I haven't heard back yet and it's making me nervous. Thank you for your post, it is so encouraging to hear from other people who are going through it or have gone through it too!

 

[Amanda]

So is your daughter in gymnastics even with arthritis? I have been trying to find examples if gymnasts who have joint issues but it's been hard to find! What level is she in, has she had to modify her training at all? I just emailed my daughter's coach explaining what is going on and asking if my DD can stay on the team but take days off if she's feeling bad. I haven't heard back yet and it's making me nervous. Thank you for your post, it is so encouraging to hear from other people who are going through it or have gone through it too!

She is doing gymnastics right now. She started team in October and is training Level 3/4 for about 15 hours a week. I talked with her rheum. quite a bit and he was ok with her increased hours. Our situation might be a little different right now as her joints are currently quiet. She is on weekly methotrexate injections for her eye- she's been on it before for her joints as well, so it could be contributing to the quiet joints. She has some hyper mobility issues so we are careful with her back in particular. Sometimes she will cut back on things that have her hyperextend. It seems like your daughter's coach should be understanding in this situation! I hope he responds soon and is supportive.

 

[tpMom]

I just wanted to update anyone who was interested - my daughter is doing great considering everything. The steroids knocked her joint inflation back almost immediately, and her rash and fatigue is much better as well. She’s still dealing with some lung issues, but a basic Albuterol inhaler helps a lot. She was cleared to go back to gymnastics yesterday and had a really good practice. She came home from the gym smiling and happier than I’ve seen her in a while. She really does do better when she can be upside down for a while .

Even better, I spoke to her coach and her place on the team is safe, even if she needs to take significant time off during flare ups. It is a huge relief to know that she has the support of her gym, her teammates, and her coach. We are still waiting to see the rheumatologist, appointments with him apparently take months to make, but we’re seeing her pediatrician at 1-2 times a week to monitor this flare up in the meantime, at least until her lung issues resolve. Thank you all so much for your support!

 

[Deleted member 18037]

^^^^ great news

 

[sce]

Fabulous update. Glad she's gotten some relief and has gotten back in the gym. Really great to hear how supportive the gym is.

 

[raenndrops]

So is your daughter in gymnastics even with arthritis? I have been trying to find examples if gymnasts who have joint issues but it's been hard to find! What level is she in, has she had to modify her training at all? I just emailed my daughter's coach explaining what is going on and asking if my DD can stay on the team but take days off if she's feeling bad. I haven't heard back yet and it's making me nervous. Thank you for your post, it is so encouraging to hear from other people who are going through it or have gone through it too!

We have 3 girls on our team with Ehler's Danlos Syndrome, hyper mobility type.
The oldest is 16 and in Xcel Gold... Plus she is a high school cheerleader and gymnastics rec coach.
The other two are in L4 and L5... Soon to be L5 and L6.
There is also a college gymnast in the SEC that seems to have E-D too.

 

[MabelSt]

autoimmune diseases are the worst

 

[MILgymFAM]

autoimmune diseases are the worst

Aren't they just? My YDD was accidentally glutened recently and had days of severe aches, tiredness, and stomach issues. She refused to miss a single minute of practice.

These kids are tough as nails!

OP, I'm glad your DD is doing well. My YDD has two autoimmune diseases and I know it can be a long road to getting to their "normal" place.