docmartenmom

My 11 Year Old Hit With Autoimmune Like Her Mom

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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

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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

 

Sheryl Doom

ISN Support Specialist

(Retired) ISN Chat Moderator

International Scleroderma Network (ISN)

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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.


Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

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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.


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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<<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

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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.

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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

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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

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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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:

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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

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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.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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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.

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