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My 11 Year Old Hit With Autoimmune Like Her Mom


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#1 docmartenmom

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Posted 23 April 2011 - 11:48 PM

Talk about mama guilt. My 11 year old daughter has been complaining of sore joints, mainly in her knees and ankles. Migraines started about 3 months ago and they mimmick mine. Her pediatrician ran blood tests and said she has lupus. I took her to a pediatric rheumatologist and she said she "does not diagnose children with autoimmune disease." I later asked my doctor why and he said they don't want to label kids. Long story short, my girl's C-Reactive protein is high, her glucose is high, her ANA is HIGH 1:320 (2 months earlier it was 1:180) and it is the speckled pattern. I know this is indicative of SLE, scleroderma, MCTD, Sjogren's. Just wondering what other measures I can take to help her. The pediatric rheumatologist doctor said she will treat symptoms as they present themselves. Our last visit she said my daughter also has inflammatory arthritis, autoimmune based, ankylosing spondylitis and tendonitis of her achilles/feet. I know how awful I feel on any given day and I am 44. Seeing my daughter going through this at 11 makes me worried, to say the least. Thanks for letting me fret.

Lori

#2 Sheryl

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Posted 24 April 2011 - 05:48 AM

Lori, so sorry to hear that your child already is suffering from so many different illnesses. Pretty soon the doctors are going to admit it is passed on to our children in some form. We have so many parent / adult child groups heres. Whether it is one illness or many of the symptoms of several that we suffer from it would be wonderful to have a real fix of some sort. Keep us up to date on how you and your daughter are doing. Fretting is fine. We all do this more than occasionally. Life can still be great. Seize each moment as they come and retain the memories for future pick me ups.
Strength and Warmth,
Sheryl

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#3 Jeannie McClelland

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Posted 24 April 2011 - 08:20 AM

Oh Lori, what a shame~ I am sorry. Here's a big hug for both of you. :emoticon-hug:

Fretting and guilt are both in the job description of 'Mother'~ If you didn't, you wouldn't be much of a mum.
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#4 docmartenmom

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Posted 24 April 2011 - 11:28 AM

Thanks ladies, your support is awesome and so needed (((hugs)))

#5 Joelf

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Posted 24 April 2011 - 02:17 PM

Hi Lori,

I am sorry to read your post about your daughter; you must be very worried and anxious about her.

I do hope her rheumatologist is able to suggest some medication to help her with her unpleasant symptoms and that she will begin to feel a little more comfortable.

Here's another :emoticon-hug: :emoticon-hug: one each for both you and your daughter; please keep us posted on how you are both coping.

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#6 Margaret

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Posted 24 April 2011 - 05:44 PM

<<Talk about mama guilt. >>

Hi Lori ,

I am so sorry to read this and I do understand the *mama guilt*. Gareth was diagnosed at age 18, but I don't have any diagnosis of autoimmune illness. Why him? :angry: My dad had rheumatoid arthritis (RA) but that's the only autoimmune disease we can come up with in our family. I had never heard of Scleroderma or UCTD before. I hope they can come up with some med to help her....like the Plaquenil that helped Gareth.

Take care, Everyone.
Margaret

#7 docmartenmom

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Posted 24 April 2011 - 11:06 PM

Thanks Jo and Margaret - hugs going out to you and yours as well. Margaret, my mom has rheumatoid and my dad's side has autoimmune issues (mainly thyroid and rheumatoid), so suffice to say I feel the guilt - especially with my own autoimmune issues. My daughter's pediatric rheumatologist doctor will not give her a definite diagnosis and since my daughter is only experiencing mild pain, I give her Advil as needed. I really hope (for her and Gareth too and everyone else out here) that she does not get worse.

#8 uknlv18

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Posted 25 April 2011 - 06:10 AM

Hi Lori

Sorry to hear about your daughter. I hope they come up with something that will help so she can be a kid and enjoy it while it lasts and not too much pain. Many hugs to both of you and do not feel too guilty we all got our little illnesses from one gene or another.

:emoticon-hug:

:spoon: :spoon:

Here's a couple of my spoons to help you out a bit!

Cheers
Jean

#9 docmartenmom

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Posted 25 April 2011 - 09:56 AM

Thanks Jean and thanks for the 2 spoons :)

#10 Shelley Ensz

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Posted 25 April 2011 - 10:25 AM

Hi Lori,

I'm sorry your daughter also has arthritis and send my best wishes to both of you.

Now, regarding the Mama Guilt. Through advanced research, I have discovered that Mama Guilt is a totally useless commodity and mathematically, if you also gave your daughter some positive traits (like a sense of humor, attitude of gratitude, lovely smile), then that balances out all the negatives and, voila, you have a Mama Guilt Score of "0"!

Of course, if you totally failed to pass along any positive family characteristics at all, then you really do owe yourself a Permanent Guilt Trip (or PGT, as we say in the trade.) So, let's say you have a Mama Guilt Score of zero, okay? Now all that is left is to help her employ all your marvelous family traits -- like smiling and laughing, to help her cope with the uncertainty and doctor visits.

All of which is much easier to do, once the Mama Guilt is sacrificed on the altar of love, fun, and good times that you will inevitably have, despite it all. I know it's too soon to do the Sclero Happy Dance over this, but for starters, it is okay for you not to feel upset with yourself for "giving" it to her, which may lighten your spirit enough to help her cope positively with the many challenges ahead.

That said, is there any mother, anywhere, who feels totally confident that they have been the perfect mother, passing along the perfect genes, and raising children perfectly? I think not! Perfection and motherhood are mutually exclusive, which is probably why psychotherapy is so immensely popular!
Warm Hugs,

Shelley Ensz
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Hotline and Donations: 1-800-564-7099

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

#11 susieq40

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Posted 25 April 2011 - 12:45 PM

So sorry to read about your daughter. You must be terrified! HUGS HUGS and more HUGS!!!
I hope that the doctors find something that will ease her pain, and help her lead a normal
teenage life!! Remember we are all here for you!!! Keep us posted!

Again HUGS :emoticon-hug: :emoticon-hug:

#12 docmartenmom

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Posted 26 April 2011 - 08:46 AM

Awww I feel so much better with your post Shelley, and you are absolutely right! I will try my best and carry on with humor - we are a very silly bunch over here so it shouldn't be too hard LOL

SusieQ I will definitely keep you posted - thanks for the hugs, it means a lot!

Lori

#13 Amanda Thorpe

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Posted 26 April 2011 - 04:04 PM

Hello Lori

Speaking as a daughter with auto immune diseases I can tell you that all we want from our mothers is support, understanding and love. Already providing these...of course you are. In addition you're making sure your daughter gets the treatment she needs. There's not much more a girl could ask for.

Take care and keep posting.
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#14 docmartenmom

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Posted 02 May 2011 - 08:50 PM

Thanks Amanda, that means alot (((hugs)))

#15 Chopper

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Posted 03 May 2011 - 10:07 AM

Awwwww, what a shame! I'm sorry to hear that! I didn't know rheumatologists generally don't 'label' diagnoses on children. I wonder at what stage of life that changes. Regardless, she'll have a sympathetic ear and a good mom to support her! Take care. Chopper.
Limited Scleroderma, Hashimotos Thyroiditis, Celiac, Gastroparesis, GERD, and Gastritis.

#16 Shelley Ensz

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Posted 03 May 2011 - 11:36 AM

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
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Hotline and Donations: 1-800-564-7099

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#17 Chopper

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Posted 03 May 2011 - 12:33 PM

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
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#18 Shelley Ensz

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Posted 03 May 2011 - 01:36 PM

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
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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.

#19 Sweet

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Posted 03 May 2011 - 03:37 PM

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,

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#20 judyt

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Posted 03 May 2011 - 07:45 PM

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