WAG Rough Day

[tpMom]

Hi all, I guess I'm mostly just venting. My 8 year old daughter works so hard, she's done really well at gymnastics and she is never happier than when she's in the gym. But her poor little body just isn't working for her.

She's been dealing with Severs, Osgood Schlatters, and minor arthritis for the past year. Lately her joints have been bothering her more and more and this week she developed a rash on her face that the pediatrician thinks looks like Lupus. We are waiting to meet with a rheumatologist and on some lab work, so I don't really know anything yet but my heart is just aching for her. She has been so excited to train for level 5 this year and suddenly she hurts so much she can barely make it through practice. I would do anything to take this pain away from her, but instead I'm afraid I'm going to have to take gymnastics from her instead. What an exceptionally rough day....

 

[duyetanh]

Oh my goodness, I am so sorry! That is just way too much for an 8 year old to go through. That is a lot for anyone to go through!! I am especially sorry about the arthritis and possible lupus....those things are really rough to navigate as a child....I don't have any answers for you, but I will put a good thought out there for both of you.

 

[LindyHopper]

Oh, I am so sorry. To have your gymmie go through all of these struggles must be difficult. There isn't a more helpless feeling than knowing someone you love is in pain when you can't do anything to help the loved one--that there is no relief you can personally bring.

Sending you both grace, peace, comfort, and the ability to find joy somewhere in your sadness. Also hoping the docs get to the root of it and that she'll be able to do what she loves.

 

[Flyaway]

I'm sorry to hear this. It sounds like a lot to deal with, let alone as a child. I hope you're able to find some way for your gymnast to continue to do what she loves.

 

[Sasha]

I'm so sorry you and your daughter are going through this. We all just want our beautiful children to have health and happiness. Threats to that, along with the powerlessness to fix it all, are the most devastating feelings in the world for a parent. I hope you get the medical answers that you need to remedy her pain.

 

[duyetanh]

I wanted to write again, because i remembered a friend of mine has a child with arthritis and rashes....and they went completely dairy and gluten free. And it helped so much. It was a last resort for the family, because they didn't want their kid to live on medication.I realize that is a huge change in lifestyle....maybe you could try just one of the two and see if there is improvement? Just an idea. I know the mom herself had similar issues, and acupuncture also helped her, but she didn't want her child doing it. Again, good luck to you. I hope you find some answers.

 

[gymmom39]

My heart goes out to you and your family. I'll send up a prayer this morning.

 

[CuriousCate]

Take heart - with treatment kids with inflammatory arthritis can do really well! To echo duyetahn, my cousin had juvenile RA and ended up bringing it nearly into complete remission with some dietary control too. It was a while back but if I recall it started as a raw food type of diet that then progressed to be more inclusive. She is also still gluten an dairy free... She did this WITH the meds in the beginning, but was eventually off of everything. She ended up being a collegiate track runner at D1 school and now even in adulthood runs frequent marathons and 1/2 maras. Getting the diagnosis and treatment will be the best thing for her!!

 

[my4buffaloes]

I'm so sorry! Hopefully once you figure exactly what is going on you can find a path of treatment that will allow her to do what she loves and be a kid still. Good luck!

 

[jlo]

So sorry for you all - prayers for healing.

 

[gymgal]

Sorry to hear this has progressed. Glad your pediatrician is being aggressive about it and getting a consult with a rheumatologist and the blood work. Hopefully you wont have to wait too long. I second (or third) attempting an alternate diet. It doesn't work for everyone but while you are waiting on the consult, it is worth a try. Please keep us updated.

 

[CLgym]

I am so sorry! Hopefully it is not lupus -- but I wanted to share that lupus runs in my family. My father suffered from it (some of his primary symptoms were RA and rash), however he was in remission for a very long time due to new and interesting treatments. There is good reason for hope! I wish you all the best.... and hope your DD is feeling better soon.

 

[tpMom]

Thank you all for the words of encouragement! My DD has made the extremely tough decision to take at least a week or two off of gymnastics to see if some rest will help her feel better. We’ve actually been following a modified diet already because of her arthritis flares but she is ready to get serious about it now. We have a fantastic functional medicine doctor in our town who actually has an autoimmune disease himself and he is willing to meet with us to go over various life style changes that may help her feel better.

I think the biggest thing for us right now is just going to be helping her work through everything emotionally. In her 8 year old mind she should be able to achieve her goals in gymnastics as long as she works hard and puts in her time in the gym. Up until this point that’s worked for her. Last summer she took every extra training the gym offered and those hours paid off in new skills and trips to the podium. Now she’s still willing to put in the time, but her body refuses to cooperate – I can’ even imagine how frustrating that must be for her.

This morning she was having a hard time just walking to the car and she suddenly sat down on the floor and burst into tears. She realized that if she can’t even hold her pencil or walk to the car she definitely can’t go to practice, and all I could do was sit on the floor with her and watch her heart break. She decided, on her own, that she was going to take today to feel sad and tomorrow she was going to sit down with me to make a plan to feel better. We’re starting a course of steroids right now for the rash on her face and the pediatrician thinks that will probably help quickly, at least in the short run. I know that things will get better, and that someday this will all just be a memory and maybe even the start to an inspirational story, but today we’re taking the time to feel sad – tomorrow we’ll work on the rest.

 

[coachmolly]

I am so sorry, what a tough thing for a little one to deal with.
My mom was diagnosed with RA about a year ago and it has been a struggle, and while she's active- she is not an 8 year old! She's also using diet to help manage symptoms- gluten free and avoiding most dairy, but will splurge on that occasionally. It has helped quite a bit and kept her off some of the stronger medications. Though with such a young kid, I would suggest meeting with a registered dietician if you opt to try gluten/dairy free just to make sure you are meeting all needs. I am constantly harping on my mom to get some healthy fat in her diet (nuts, olives, etc.), I can imagine those dietary gaps would have a much bigger impact on someone still growing.
I have a colleague who struggled with autoimmune type symptoms growing up with no conclusive diagnosis, as an adult she was finally tested for Celiac disease which ended up being the cause of just about everything. All of those autoimmune diseases (Lupus, Celiac, RA) can appear in similar ways, so best to check for them all.
It sounds like you have a great doctor who is taking all of this seriously and so helpful, not only in making referrals and giving prescriptions, but helping with the day-in/day-out realities of it and how to best manage and cope with it all.

 

[my4buffaloes]

It's normal and OK to feel sad. It is sad. I am so sorry for you and her. She is so strong already to be doing what she is doing. Hopefully you can some answers with easy solutions soon.

 

[gymgal]

Sounds like you have good plan to start. If the steroids are taken orally, they should help with the joint flares too, at least for a little while.

 

[UnoMas]

Many hugs to you. First I hope that the doctors can figure out exactly what's going on and get a plan going to treat the issue. It's very frustrating to not be able to go out and "attack" gymnastics head on 100%, and to feel as if she's falling behind. What a great attitude she has though, she is clearly a special kid and that's going to serve her well in gymnastics and in life.

My DD has been dealing with back issues for over a year and she's also had to step back and take things slowly. She's much older but it is still hard for her, and still hard for me to watch. I admire her persistence though, it sounds like your DD is much like mine in that she will not give up and work through this bump in the road. Hugs again!

 

[MomIdidit!]

Prayers, hugs and good thoughts your way. You dd is an amazing role model!!! Hoping this will pass soon. Please keep us posted

 

[ascarter1]

Thank you all for the words of encouragement! My DD has made the extremely tough decision to take at least a week or two off of gymnastics to see if some rest will help her feel better. We’ve actually been following a modified diet already because of her arthritis flares but she is ready to get serious about it now. We have a fantastic functional medicine doctor in our town who actually has an autoimmune disease himself and he is willing to meet with us to go over various life style changes that may help her feel better.

I think the biggest thing for us right now is just going to be helping her work through everything emotionally. In her 8 year old mind she should be able to achieve her goals in gymnastics as long as she works hard and puts in her time in the gym. Up until this point that’s worked for her. Last summer she took every extra training the gym offered and those hours paid off in new skills and trips to the podium. Now she’s still willing to put in the time, but her body refuses to cooperate – I can’ even imagine how frustrating that must be for her.

This morning she was having a hard time just walking to the car and she suddenly sat down on the floor and burst into tears. She realized that if she can’t even hold her pencil or walk to the car she definitely can’t go to practice, and all I could do was sit on the floor with her and watch her heart break. She decided, on her own, that she was going to take today to feel sad and tomorrow she was going to sit down with me to make a plan to feel better. We’re starting a course of steroids right now for the rash on her face and the pediatrician thinks that will probably help quickly, at least in the short run. I know that things will get better, and that someday this will all just be a memory and maybe even the start to an inspirational story, but today we’re taking the time to feel sad – tomorrow we’ll work on the rest.

Prayers for your little one! My mom has lupus, so this hits close to home!

I second the dairy and gluten. If there is an intolerance, the body will end up fighting itself! I took wheat out of my youngest dd's (non-gymmie) diet. She was severely asthmatic (to the point that we carried the big nebulizer with us everywhere we went) but when we removed wheat, her asthma improved a million times over! She is 5 years old, and she knows what she can and cannot have. She has learned to ask her teachers or the cafeteria workers when in doubt. Going gluten free is tough at first, but gets easier with time.

A gluten intolerance would be much easier to deal with than lupus...so I've got my fingers crossed for you! Please keep us updated!

 

[Deleted member 18037]

My heart breaks for her. I know how devastating autoimmune issues can be.