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Sugarfoot

Please help me calm my fears...

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My sweet DD is sick. She's 12, almost 13, and something's just not right. We've been struggling for awhile now. She quit gymnastics a year and a half ago when the time commitment got to be 9 hours a week. Her feet and legs hurt so much every night that she needed a heating pad and Aleve to sleep. We're taking a break from karate right now. That was 3.5 hours a week. She rarely needs heat to sleep now, but still does occasionally if she's been playing hard. She's always caught every cold/virus that comes along. All of the kids were sick when we came home from our trip last month. The other 3 got over it. She's still sick. She's never had a sunburn in her life. Suddenly, she develops a rash on her face and arms whenever she's outside. Twice now she was out without gloves in the cold for just a few minutes, and her fingers turned blue. Her hands look "weird."

 

My DH is a physician, and he NEVER overreacts about the kids. His answer is always, "they're fine." Even he's worried.

 

We see our pediatrician at 2:15 today. Prayers and good thoughts are appreciated. I'm scared...

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I can't calm your fears because I'd be worried to, but I *can* offer a virtual :grouphug: and supportive prayers. :grouphug: I hope she'll be well again soon.

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Awwww. Of course, I'll pray.

 

My oldest went through something like this a while ago (minus the blue hands). They tested him for everything under the sun. It was a very scary time. He was and is fine. I pray the same is true for your dd.

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Will you be asking for a referral to a rheumatologist? That would be my next stop after the pediatrician. Poor baby girl... :(

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Could it be too much gymnastics (too intensive) while she was in a growing spurt when the joints hurt anyway?

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Thank you so much for the prayers, everyone. They really help. She's such a sweetie. It's awful to see her like this.

 

 

 

:grouphug:Praying - I'm local if you need anything at all. Really.

 

I appreciate this so much! Things have been pretty hard around here. I think I've just gotten used to her being sick for so much of the winter that as things have gotten progressively worse, it's almost like it sort of sneaked up on us. Last spring, I was diagnosed with a form of mono and was sick for a long time. She actually seemed okay through most of that. Then fall hit, and things have just been getting worse and worse.

 

I hope you guys are doing well! Think of us this afternoon...

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Will you be asking for a referral to a rheumatologist? That would be my next stop after the pediatrician. Poor baby girl... :(

 

This is what I want. Today I want basic labs drawn. We also need something done about her cough. Then I want a referral to a pediatric rheumatologist. It scares me to write that... But that's what I think we need. Our pediatrician is great, we know him well, he'll do whatever he can to help us.

 

Could it be too much gymnastics (too intensive) while she was in a growing spurt when the joints hurt anyway?

 

She's tiny. She has just in the last 6 months grown about 6 inches to reach 5 feet. She weighs about 80 pounds. Looking back, she has always complained of foot/ankle/knee pain. I think the gymnastics and karate definitely contributed to it.

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I am not a doctor but have they thought about Raynaud's syndrome? Blue hands are a key sign. It limits blood flow to the hands and feet so maybe that is where her pain is coming from. Prayers that they find an answer soon.

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There is definitely something going on there! I'm glad you're taking her to the doctor. I'll definitely pray for you, her, and wisdom for the doctor!

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UPDATE:

 

Our pediatrician is thinking the same things that we are. He ordered a whole bunch of lab work which will have to be sent to the nearest large city. If anything comes back positive, she'll need to see a pediatric rheumatologist. She may need to do that even if it doesn't, but honestly, I'll be pretty surprised if everything comes back normal. I think her ped. will, too.

 

As for her cough, he thinks it's most likely a virus that she hasn't been able to fight off because her immune system is compromised in some way. She's starting to get other cold symptoms tonight, too, so she'll be even sicker, yet again.

 

On the plus side, she weighs 85 pounds.

 

So for now, we wait.

 

Thanks again, everyone, for the prayers and good thoughts. They're very much appreciated.

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Please keep us posted :grouphug: I grew up with ankle pain all my life, my grandmothers remedy was aspirin, Ben-gay, and to rub my feet. As I grew up it moved to my ankles, and in the last 2... my hips. Having 6 children hasn't helped with that. My Dr doesn't have much answers :glare: Personally, I don't even think he's trying. I am in pain at least 3x a week, especially if I have been out that day. I know my weight doesn't help but, if I am pain after just walking, and this is pain I had before I got overweight, what do you do then :confused: Sorry, I didn't mean to make this about me... I guess my true concern lies in that my 4 yr old has been complaining of ankle and foot pain. Her ped said it was nothing, but she goes on about it more then she should.... so I'll be watching to see what you Ped says. Then maybe I can get some answers for her. I suspect she has whatever I grew up with, and I don't want her to have to live with that :(

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Thanks for updating. I was thinking about you all day.

 

:grouphug:

 

That is so sweet of you! Thanks so much!

 

Please keep us posted :grouphug: I grew up with ankle pain all my life, my grandmothers remedy was aspirin, Ben-gay, and to rub my feet. As I grew up it moved to my ankles, and in the last 2... my hips. Having 6 children hasn't helped with that. My Dr doesn't have much answers :glare: Personally, I don't even think he's trying. I am in pain at least 3x a week, especially if I have been out that day. I know my weight doesn't help but, if I am pain after just walking, and this is pain I had before I got overweight, what do you do then :confused: Sorry, I didn't mean to make this about me... I guess my true concern lies in that my 4 yr old has been complaining of ankle and foot pain. Her ped said it was nothing, but she goes on about it more then she should.... so I'll be watching to see what you Ped says. Then maybe I can get some answers for her. I suspect she has whatever I grew up with, and I don't want her to have to live with that :(

 

She's always sort of been in more pain than I think is "normal," too. I had a lot of what people called growing pains when I was a kid, but she goes beyond that. And her hands look odd. You know how most kids sort of have baby hands for awhile until their knuckles start to appear? Well, she never did. And now, they have a strange appearance to the skin, too.

 

I'm not shy about asking a Dr. for what I think we need, but I know all of ours, too, so that helps, probably. He was actually thinking the exact same things, though. He mentioned several types of juvenile rheumatoid arthritis, a few things I can't remember, and even Lupus, since she also has a strange rash that develops in sunlight. Gosh, it kills me to type that. He ordered lab work as the starting point to pick up on any of those things, so if that's what you suspect for yourself or your DD, I would just request those labs to be done.

They may show nothing, but then again, it may lead to some answers.

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That is so sweet of you! Thanks so much!

 

 

She's always sort of been in more pain than I think is "normal," too. I had a lot of what people called growing pains when I was a kid, but she goes beyond that. And her hands look odd. You know how most kids sort of have baby hands for awhile until their knuckles start to appear? Well, she never did. And now, they have a strange appearance to the skin, too.

 

I'm not shy about asking a Dr. for what I think we need, but I know all of ours, too, so that helps, probably. He was actually thinking the exact same things, though. He mentioned several types of juvenile rheumatoid arthritis, a few things I can't remember, and even Lupus, since she also has a strange rash that develops in sunlight. Gosh, it kills me to type that. He ordered lab work as the starting point to pick up on any of those things, so if that's what you suspect for yourself or your DD, I would just request those labs to be done.

They may show nothing, but then again, it may lead to some answers.

 

Hi Gina,

 

I am so sorry your daughter and family are going through this (((hugs)))! It sounds like your Dr is doing everything that needs to be done at this point. Hopefully they will have some answers for you guys or a referral soon!

 

I was "sickly" as a child and it took them years to diagnose me, at least now there are a lot more resources and knowlegde about these diseases/syndromes, especially that they can occur in children. If her labs do come back normal, keep pushing if you feel that she is still having problems. Sometimes once the labs are normal they will just dismiss the problems and send you on your way.

 

If you have questions about Jr Rheumatoid Arthritis there is a great forum at the Arthritis Foundation http://community.arthritis.org/forums/Forum1816-1.aspx. I think there is also a little info on Raynaud's Phenomenon, and Systemic Lupus Erythematosus (Lupus).

 

I'll keep you all in my thoughts!

 

Marisa

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:grouphug: i'm glad your ped is being thorough and i hope you find out more info soon:grouphug:

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:grouphug: Please let us know what you find out. It's good that your dh is a physician - seems like your daughter's ped might be more apt to take your observations seriously, early. :grouphug:

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:grouphug:

 

Sending prayers for your dd. I hope the problem is found and she heals quickly.

 

My dh and his family have lupus, and the outbreaks are kept away with lots of anti-inflammatory foods in every meal like turmeric and flax seed oil. Bromelain, which is in pineapples, is a relief for artheritis and helps with sun tolerance. Tea from turmeric and ginger is good for the cough and arthritis. Please hear my advice to be careful with all meds and no more vaccines! HTH!

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UPDATE:

 

Our pediatrician is thinking the same things that we are. He ordered a whole bunch of lab work which will have to be sent to the nearest large city. If anything comes back positive, she'll need to see a pediatric rheumatologist. She may need to do that even if it doesn't, but honestly, I'll be pretty surprised if everything comes back normal. I think her ped. will, too.

 

As for her cough, he thinks it's most likely a virus that she hasn't been able to fight off because her immune system is compromised in some way. She's starting to get other cold symptoms tonight, too, so she'll be even sicker, yet again.

 

On the plus side, she weighs 85 pounds.

 

So for now, we wait.

 

Thanks again, everyone, for the prayers and good thoughts. They're very much appreciated.

 

:grouphug: I'm sorry about your dd. My ds8 has JRA. It took us from the age of 2 until 4 to get his dx, and one of the things I would always bring up to the doctors was a barking cough. He still does the barking cough to this day, though it's not as often as it was. It was never thought to be related to his other symptoms, but I just wanted to mention it because of your dd.

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...since she also has a strange rash that develops in sunlight...

And you described possible Raynaud's syndrome as well, which can stand on its own, but might also be a symptom of Lupus (given everything else)... Among other things, can you ask them to test her vitamin D levels? And I would take the referral regardless of what the results are. Maybe even schedule the appt now (since it may take a while to get in as a new patient), knowing you'll at least have a little more information to give by the time you go in...

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That is so sweet of you! Thanks so much!

 

 

 

She's always sort of been in more pain than I think is "normal," too. I had a lot of what people called growing pains when I was a kid, but she goes beyond that. And her hands look odd. You know how most kids sort of have baby hands for awhile until their knuckles start to appear? Well, she never did. And now, they have a strange appearance to the skin, too.

 

I'm not shy about asking a Dr. for what I think we need, but I know all of ours, too, so that helps, probably. He was actually thinking the exact same things, though. He mentioned several types of juvenile rheumatoid arthritis, a few things I can't remember, and even Lupus, since she also has a strange rash that develops in sunlight. Gosh, it kills me to type that. He ordered lab work as the starting point to pick up on any of those things, so if that's what you suspect for yourself or your DD, I would just request those labs to be done.

They may show nothing, but then again, it may lead to some answers.

 

When I read your first post, I immediately thought it sounded like an auto-immune disorder. My mother has something, which I can't remember the name of, and it was diagnosed because she constantly got sick and couldn't get better on her own. It's an auto-immune disorder where her body doesn't make the right kind of antibodies to fight off infections. She has to inject antibodies weekly and is on a permanent dose of antibiotics. She had similar symptoms to lupus, as well. That's why your daughter's symptoms made me think auto-immune.

 

I hope they figure out what it is and that your daughter can start feeling well again.

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