docmartenmom

My 11 Year Old Hit With Autoimmune Like Her Mom

23 posts in this topic

Hi Chopper,

 

It's a good question at what stage of life the "not labeling" stops. I suspect the answer is "never" for many doctors -- until something happens which forces it into the chart anyway -- because I went through the oddest sequence of strange comments from doctors a long time before I was told I had scleroderma -- and even then, it was "off the chart" which I found terribly upsetting at the time. I was actually more upset about it being off the chart, than I was about having scleroderma, because it felt like a lie to me and I wasn't aware that doctors were allowed to lie. (Yes, I was that terribly naive!) So I heartily objected to the whole idea, whereupon I was given a lecture about being unemployable and un-insurable for life if it went into the chart.

 

Later on, I learned that it is normal for doctors to avoid putting a scleroderma diagnosis "in the chart", even for adults. This probably explains in large part the average of six years waiting for a formal diagnosis of scleroderma among women in North America. The doctors reason that it doesn't matter at all and can negatively impact our life. We tend to reason differently as I have only seldom heard of patients who were happy with a delayed diagnosis "in the charts".


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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Hi Shelley,

 

That's interesting. I hadn't thought about that being a possibility that it can affect employment and insurance. Does that happen in this day and age? I want to know exactly what I have when all the testing has fine-tuned their suspicions. I think for the simple fact that it helps us to know what to watch for so we can get care early in the stage. For example, sometimes we have a symptom that we didn't know was a symptom. Lori's daughter is so young that something may seem normal to her because she doesn't know differently. Of course Lori will be an excellent advocate for her daughter's health.

 

Chopper


Limited Scleroderma, Hashimotos Thyroiditis, Celiac, Gastroparesis, GERD, and Gastritis.

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Hi Chopper,

 

Yes, it still affects employment and insurance, even in this day and age, sometimes subtly, and sometimes overtly. For example, you really want to wrap up your life insurance before a scleroderma diagnosis (even for a child). I'm not sure exactly when all the new U.S. health insurance laws kick in, but in the meantime I believe there are still "pre-existing condition" exclusions.

 

The hard fact of life is that absolutely nobody will be looking out for your own well-being. If you want to have health insurance, life insurance, disability insurance, etc. you have to know your rights and responsibilities ahead of time. After the fact, it is too late and you (and your family members affected by this) will be up the creek, without a paddle.

 

We know of one (count 'em, ONE) life insurance agent who will try to work with people who have already been diagnosed with scleroderma. Even then, he has to shop the case around for months before sometimes finding coverage after really selling and presenting the case (in its most positive light) over and over again. And mind you, it took six months of approaching life insurance agents before I even found that one who would even consider discussing the possibility. We list him on our main site.

 

Patients, beware. Always.


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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Oh Lori, I am so sorry. I don't know what to say. I think it would be very, very hard to have one of my kids sick with any type of anything! So my heart goes out to you. :emoticons-group-hug:


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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Hi,

At the risk of being labelled a crank and way off the planet I wonder if diet could help your daughter? These ideas come in and out of fashion over the years, but from my own experience I want to make the suggestion to you.

 

Our daughter had the same sort of rheumatic symptoms as you describe when she was growing up. We had the same sort of reactions from doctors so I fully understand how you feel. The not wanting to 'label' children is understandable but not always helpful to us as Mums. If anybody had suggested to me to try a gluten free regime for our daughter I think her life might have been easier for her.

 

She is not coeliac, according to blood tests done in her 30's, but we are now quite sure she is gluten intolerant.

There is a specific gene responsible for ankylosing spondylitis HLA27 I think it is labelled - has your doctor tested for that?

 

As an adult and mother herself she can see that she is better on a low starch/gluten free regime. She has not been tested for the AS gene because she doesn't really want to know and prefers to manage her own health in her own way. As an observer I suspect she might be positive but what difference would it make anyway?

 

Our daughter is a highly intelligent young woman who does her own research on subjects she wants to know more about (somebody once told her in an employment related IQ assessment that she should be a Rocket Scientist) and she thinks that the high prevalence of gluten intolerances which seem to be popping up these days are due to the refining of wheat from a genetic point of view. Producers want a grain which is high yield, weed resistant, disease resistant, long shelf life etc. etc. and have lost sight of the fact that Man, the consumer, has not developed as fast.

 

As a child as well as the rheumatic aches and pains she had asthma and eczema and the only times she was really well were when we tried a regime free of any grains. It is VERY hard to keep a child on a restricted diet - don't I know - but it may be worth while.

 

You may well be saying to yourself that gluten free food is not very palatable and too hard to find, but every month seems to see more products on our supermarket shelves and there are lots of new recipe books available with yummy ideas in them. Marie is a creative baker these days and has herself and her two girls enjoying all sorts of interesting suitable foods.

 

Best wishes and soft warm hugs to you and your daughter.

 

JudyT

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I'm just following up on JudyT's post. Here is the link on our main site regarding Gluten Intolerance, Celiac Disease and Autoimmune Diseases (including scleroderma). As you'll see, it's not the be all and end all, but sometimes gluten sensitivity does play a factor (of some sort) with illnesses and they are still trying to figure out why there is a greatly increased incidence of celiac disease in people who have systemic scleroderma.


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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:sorry:

 

I am so sorry to hear that. I know that its hard seeing your baby hurt yet, who else will ever understand the pain like you? Fight the fight with her. Take every second and enjoy it to the fullest. And...who's to say that the two of you can't have special days when you both feel bad and make the BEST memories? Memories that no one can ever take from the two of you!!!

 

Love is way stronger than any stupid illness :wub:

 

 

Plinksgirl

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Hi Responders - Thanks for all of your advice & heartfelt compassion - it means ALOT. I have been giving my daughter the gluten-free diet for a month now, without any change. She is still achy, hobbles in the morning due to sore feet and is still presenting with headaches, occasional temper tantrums :( and low grade fever here and there. In the beginning her pediatrician tested her for ankylosing spondylitis and she was diagnosed with that. Further testing from him and her pediatric rheumatologist came up with the ANA speckled pattern - main doctor says it's lupus, her pediatric rheumatologist doctor says she will not "label" her, so I am frustrated but braced and ready for whatever comes. I am just so sad that this is happening to my 11 year old. I know how terrible I feel on any given day and I am 44 - I had good health up until my mid-thirties, so I cannot imagine how she feels as a kid going through this. I have endless hugs and understanding for her. You all rock so much - I will keep you posted on my little one's progress. Fingers crossed for a remission, and a looong one at that. ~ Lori

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