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kellyA

Need advice

11 posts in this topic

I've been going back and forth with the idea of running some blood work on my oldest daughter who is 8 now, she has a little reflux and her muscles get sore easily and is always tired, since I have 3 family members with scler, lupus and poly..I feel like I should just to feel better, however, there's a part of me that is scared to death to find out if it's positive, any thoughts on this?

 

Kelly A

NJ

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It is unusual for an eight year old to be suffering from reflux. If she is symptomatic, you should make an appointment for her to see a doctor and let him or her decide whether further tests are warranted. You would feel a lot worse if you missed the opportunity to get treatment because of your fears.


Warm wishes,

Jefa

 

Carrie Maddoux

(Retired)ISN Sclero Forums Support Specialist

(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

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If it is going to give you piece of mind you should make an appointment. When my youngest daughter was 5 she told me she had a buzzing in her ears and occassionally had a headache. I didn't think much of it. She had an appointment with her ENT two weeks later so I mentioned it. Good thing I did because they ordered an MRI and we found she had a condition with her brain and spinal cord.

 

Follow your mother's instincts.

 

Hugs,

Lisa


Lisa Bulman

(Retired) ISN/SCTC List Coordinator

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Fundraiser

International Scleroderma Network (ISN)

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I'm sure it's scarey, but not knowing won't change the facts. I always feel it's better to know so that I can start doing something about it. If the tests come back negative you will be wasting energy worrying about nothing, and that's no good either. Good luck.

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I agree with the others too...better to follow your instincts and have her visit a doctor rather than gamble and possibly let things go that will bother you more later. Keep us updated on what you decide.


Sending good wishes your way!

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kellyA,

 

Our instincts are one of the things that make moms as special as they are. I'm sure you will feel much better knowing what is going on with your daughter than worrying. As was mentioned by the others, at least discuss her symptoms and your family history with her pediatrician. I wish the best for you and your daughter.


I may have Scleroderma, but Scleroderma doesn't have me!

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Hi Kelly:

 

Our instincts as Moms is to protect our children and in some strange way that means do we face the fear of finding out the truth? As I've said in the past on this forum, I ran from the truth until my son said "it is what it is" and putting a name to the symptoms doesn't change what it is, not evening running from it.

 

If your daughter has symptoms, they need to be checked out. Your fear is that it's our disease, but it may very well not be. In any event, it really has to be addressed and the earlier, the better.

 

Please keep us posted and drop me a PM if you'd like. We're here for you.


Tru

 

It is what it is...........

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Mother's instincts are the best indicator of problems and they can also be wrong. I would get the test so you can know for sure with what you are dealing. If it is nothing - no more nights of worry. If it is something you have caught it early enough to get the very best treatment and can forestall many complications by early treatment. It is a win-win. Good luck!


Smurfette

 

Chocolate, It isn't just for breakfast anymore!

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Kelly,

 

I know how you feel. My son whom is 15 has doctor appointments next week because they think he might have Marfan. It is heartbreaking to think our children might have something. I felt the same way you do, but I know it is better to find out now. I have not told my son anything about it yet. I don't feel like I should mention it until we get some results. I hope that he does not have it, but if he does we need to know.

 

Hugs

Nina Lynn

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Hi Kelly,

 

Something to consider is that a diagnosis of scleroderma or lupus could render your daughter uninsurable (for life and medical insurance).

 

Discuss your concerns, all of them, with her primary care doctor. As it happens, almost all children have a little bit of reflux. And as for being tired all the time, she may have something as simple as allergies or may not be getting the full 10 to11 hours of sleep a night that children her age need, or she may just need more fresh air and exercise due to our increasingly sedentary lifestyles nowdays.

 

What I'm trying to say is that her symptoms could be a combination of very simple things, so look to them first of all. And try not to discuss your concerns with her, as children process things different than adults, and she could easily worry that she is going to die right away (and thus become more stressed and fatigued.)

 

Please let us know how things go. I send my best wishes to both of you.


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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I was not much older than your daughter when I started having reflux. Back then, we didn't know what the problem was. My mom took me to a dozen doctors or so, for odd symptoms that then no one realized. My frequent chocking and coughing at night (reflux), my fingers turning colors when cold (Raynauds) and my mouth was so small and seemed to be getting smaller (skin tightening in my face.) It took until I was 16 to be diagnosed at a specialized Children's hospital. Mom knew something was right, but no one could give her any answers.

 

God be with you.

 

Michelle

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