WAG Another Rough Day...

[tpMom]

.... and another vent from me I guess. As some of you know, my daughter has struggled with some autoimmune issues or the past few years. It started with joint swelling and fatigue and ended up causing a rash and some issues with her lungs last year. She was put on steroids, started treating with a rheumatologist, and has actually had a really great summer. We went almost 6 months without a flare up - during which time she excelled in the gym and in pretty much everything she set her mind to.

In October, things started getting rough again. It started with another bad cough. We treated with steriods, albuterol, and antibiotics. When, after a few weeks, it wasn't getting better, the pediatrician ordered a chest x-ray. We weren't even back home from the hospital (where we got the x-ray) when the pediatrician called to say that the x-ray had shown some concerning scarring across the upper lobe of her right lung which extended to her heart. Her pulminary function tests came back diminished (she was operating at about 75% of lung function with steroids and albuterol on board.) We've been processing this information, and waiting for an appoitment with the only pediatric pulmonologist in the state, when she started having some unexplained backpain. So we went back in for more tests, and yesterday we discovered that she has blood and protein in her urine. Which means that whatever is harming her lungs is also harming her kidneys. We are waiting for the rest of the blood work to come back but it sounds like the next step is going to be a lung biopsy, which just sucks.

The reason why I'm talking about this here - other than the fact that I needed an anonymous way to talk about this since her dad and I are not telling people what's going on until we have better information, is that she is still intent on going to gym as often as she can physically make it - and it has been so rough! She was cleared by her pediatrician and rheumatologist to continue with gymnastics (in fact, the pediatrician told me she thinks the reason my DD has been functioning so well even with reduced lung and kidney function is BECAUSE of gymnastics - she kept her body so heathly and strong that it can compensate for the systematic inflammation.) I've spoken to her coach so she knows what's going on, but my daughter is such a perfectionist that she won't cut herself ANY slack when she has a rough practice.

Of COURSE she's having rough practices. First of all, she skipped from level 3 to level 5 - that's super tough and any healthy athlete would most likely struggle with that change. Secondly, her body is not working the way it should. If I had growing scar tissue around my heart, lungs, and kidneys I would be curled up on the couch, flat out refusing to cook dinner (haha), this kid is still practicing 11 hours a week at full force, and then feeling upset with herself when she's too tired to finish strong on her conditioning. She's coming home from practice in tears, completely upset and scandalized that her body is not doing what she wants it to, and I don't know how to help her. It's so frustrating, I just wish I could solve one problem for her. Make her healthy, make her feel proud of herself for working so hard even when she's not healthy, help her celebrate her enormous successes instead of always focusing on how she could do better. It can be tough to be a mom, and even tougher to be the parent of a gymnast...

 

[MeetDirector]

tpMom -

My heart goes out to you and sending the strongest of parent vibes your way!

It may not help, but I think its important to impress upon your fighter daughter that her "normal" is not going to be the same as everyone else's "normal." You have to help her figure out what that new normal is for her so that it can be celebrated when she has a "normal" day and even more celebrated when she exceeds her "normal". It has been shown that the human brain plays such an important role in healing that keeping that strong mental outlook is critical. Make sure her coach knows what her "normal" is so she can help her get there and beyond.

Good luck and hang in there.

 

[RTT2]

I am so, so sorry you and your family are dealing with this. I hope you get answers and a solid treatment plan soon. Sending healing vibes to your DD.

 

[John]

Chalk dust.

 

[Tuppy]

hugs. hope things get better soon.

 

[gymmom10]

I am so sorry for you and your daughter to be going through this and wish you continued strength. I just hate when kids have to struggle with with illness and health issues so young. So unfair.

 

[2gymkids]

I'm so sorry to hear that your daughter is having health issues and struggling so much. It must be so hard to deal with being worried about her physically and have her so upset about the limitations it's putting on her. It just plain sucks. I hope you guys can figure out what's going on. Huge hugs.

 

[calli]

Wow reading your post really puts a rough day in perspective for me. I am so sorry for what your daughter is going through and I hope you get answers very soon. Hopefully when she sees the pulmonologist the respiratory issues will turn around and resolve. Your daughter is inspiring many with her work ethic, perseverance, and tenacity. She sounds like a super strong person and I would keep all of the encouragement your giving her going and maybe ask her to tell you 2 or 3 things that happened at practice each day that went well or were her proudest moments. It may be skill related or that she helped out a teammate or her coaches in some way.

 

[Mamabear123]

Biggest and tightest (((HUGSS))). Your DD's perseverance is so inspiring. Her perseverance is literally helping her stay a little bit healthier and she's refusing to not crawl in a ball to let this thing take over get body. Truly amazing.

 

[duyetanh]

I am so sorry for all you are all going through. I will send prayers your way, and please send us updates.

 

[Flippin'A]

I'm so sorry your family is going through this. In my experience gymnasts are some of the toughest, most resilient young people out there. It may be difficult to watch her being so hard on herself, but it also speaks to her strength, that even with these setbacks she still wants to push herself to be better. She must be a very special girl.

 

[Mish]

So sorry you all are going through this. I think what @MeetDirector said is wonderful. Sending strength your way, please keep us updated.

 

[Mrs. Puma]

Poor kid! Yes, vent away.... Autoimmune issues can be so difficult to deal with and to diagnose. Sending good thoughts your way!!!

 

[gymgal]

Praying you get answers soon. It is so hard watching your child struggle through and not be able to do anything about it, on top of not knowing the extent of the medical situation. Would it be possible for the coaches to give her different assignments? If they are only saying - do what you can - she is going to push it too far. If they modify her assignments from the beginning and it is coming from the coaches (and maybe get the dr on board?) then she may take it better than from a parent.

 

[sewgood]

Is it lupus? I'm so sorry she is dealing with this. How old is she?

 

[Flyaway]

I hate this for you and your dd. I hope you're able to get answers soon and yes, like Meet Director said so eloquently - outlining new normals may be in order. Regardless it sounds like your dd is amazing and hopefully will overcome whatever obstacles she faces! Hugs to you all.

 

[MuggleMom]

Nothing but love and prayers your way. Prayers for your daughters health and prayers to guide you in the best way to keep her happy and healthy!

 

[tpMom]

Is it lupus? I'm so sorry she is dealing with this. How old is she?

She's 9. They were thinking Lupus earlier this year when her rash showed up and some of her blood work pointed toward Lupus, but aparently not all of it. In August, after several great months, the rheumatologist officially said he didn't think it was Lupus after all - and frankly we have all been hoping that her joint pain and other immune symptoms were in the past.

 

[momof2gymmies]

I am so sorry. My daughter has cystic fibrosis, and has had some pretty crappy lung function over the past year or so. This time last year she was functioning at 69%, and her gymnastics took a hit. Her pulm fully supports DD doing gym as much as she is able to, as it helps her lung function. Her normal may not be the same normal as her friends, but it is what it is. My DD does not want to be treated any differently than her gym friends, so she pushes herself all the time, sometimes probably harder than she should. We do a lot of talking about listening to your body, and trying to help her understand when she is having a difficult time breathing that it may actually help to take a break, and let herself recover, and then her gymnastics may actually be stronger.

We try not to dwell on her respiratory issues anymore than we have to, which admittedly is a lot since she does 3 hours of breathing therapy a day. It just happens to be something she has to deal with, much like her friend who broke her arm and is sitting out and only conditioning right now. I am not sure if that is the right way to do it or not, but it seems to have cut down on some of the tears and I can't do its.

Hang in there. It is hard, but these kids are crazy strong and resilient. I hope you get some answers soon.

 

[tpMom]

I am so sorry. My daughter has cystic fibrosis, and has had some pretty crappy lung function over the past year or so. This time last year she was functioning at 69%, and her gymnastics took a hit. Her pulm fully supports DD doing gym as much as she is able to, as it helps her lung function. Her normal may not be the same normal as her friends, but it is what it is. My DD does not want to be treated any differently than her gym friends, so she pushes herself all the time, sometimes probably harder than she should. We do a lot of talking about listening to your body, and trying to help her understand when she is having a difficult time breathing that it may actually help to take a break, and let herself recover, and then her gymnastics may actually be stronger.

We try not to dwell on her respiratory issues anymore than we have to, which admittedly is a lot since she does 3 hours of breathing therapy a day. It just happens to be something she has to deal with, much like her friend who broke her arm and is sitting out and only conditioning right now. I am not sure if that is the right way to do it or not, but it seems to have cut down on some of the tears and I can't do its.

Hang in there. It is hard, but these kids are crazy strong and resilient. I hope you get some answers soon.

I can't even begin to tell you how encouraging this post has been for me. I am so sorry to hear about your DD and her Cystic Fibrosis, it must have been extremely difficult to get news like that. But, selfishly, it is so inspiring to hear that your child is still in gymnastics, even with a chronic condition with no cure. I feel like my daughter is very like your discription of your daughter when it comes to gymnastics, she has ZERO interest in being treated differently from anyone on her team. The idea of asking her coach to have a new, separate plan for her feels like it would probably be met with the same reaction as if I suggested she quit gymnastics entirely. (In fact, we did suggest that she opt out of level 5 and just compete a level 4 season without the pressure of trying to hit the skills required for level 5 and 6 - she was completely scandalized by the suggestion, we might as well have suggested she cut off both arms to avoid having to do homework for a while!)

I also spend a lot of time talking about listening to her body. This sees to be the number one factor that she can work on. But it's hard for her to right now to identify when she should be pushing herself to grow and when she is pushing herself beyond a healthy limit. Can I ask - when your DD was operating at 69% lung function, did she get sore more often and more seriously? My little one has been coming home from practice completely exhausted, and then the next day she is sometime so sore that she can barely walk, or lift her arms depending on the conditioning the day before. She used to be able to do much more than she's doing now, and she never complained about being sore. The coach and I have a theory that this additional soreness is because her muscles are not getting the oxygen they need due to her decreased lung function.

Also, what do your DD's coaches do to help her with her condition? My daughter's coach knows what's going on, and is working with me to try to find the right balance between pushing her to work hard and be brave, and cutting her some slack when she's having a low-energy, low-performance kind of day. The tough part is, is that my DD NEVER complains during practice. I have picked her up laughing and joking with her teammates only to have her walk out of the building and burst into tears because her joints hurt so bad that she didn't feel like she could walk anymore or because she was so tired that she said the street looked blurry. I completely trust her coach, I know she's not pushing her against her will, this is 100% coming from my daughter. We've had conversation after converstation about letting her coach know when she's hurting or tired. In fact, the head coach (at the optionals level) has also spoken to her about communicating with them about how she's doing - but she seems to think that if she admits she's hurting or asks to take and extra break she's failing in some way.

Okay, I realize this is getting long. I mostly just wanted to thank you for sharing your story about your daughter, it's the first time in a while that I've felt like we can deal with this issue and stick with gymnastics. Really, from my heart, thank you.