Sjogren's in children

[Tracey]

Hi all - I'm new here. One of my 10-year-old twins was recently diagnosed with Sjogren's, after a year-long stint of bloodwork and a surgery to remove a mass in her salivary gland, which turned out to be the actual enlarged gland (and not a lymph node as they feared).

She is now on plaquenil and steroids to bring down the inflammation, which has been moderately successful - but not totally.

Does anyone here have a child with Sjogren's who can share their journey with me?

We're going to see a doctor in NY who is on the Sjogren Foundation's board for a second opinion, because it seems to me that her pediatric rheumatologist still isn't sure what we're dealing with.

My daughter has NO Sjogren's symptoms aside from what they found in the blood work. No dry eyes, etc. And she has never been in any kind of pain - just presented with a big lump in her salivary gland about 18 months ago and we've been on a roller coaster ever since.

[Scottietottie]

Hi Tracey 

Welcome to Sjogren's world.

We sometimes have a Mom in here who has a four year old - probably five or six now - with Sjogren's Syndrome and we aslo have a young woman in here who started posting when she was eight.

I hope one of them see your post and get in touch. They may. I believe the mother of the youngest child set up a Sjogren's page on Facebook.

You may find its a blessing that she has been dxd young. Obviously she will be carefully monitored and Plaquenil is prescribed to slow down the progression of an already slowly progressive disease.

Take care - Scottie 

[Patze]

Hi Tracey,

Let me also welcome you to the SJS World and family!  Please do look around the board as you'll scads of topics that you might be interested in for your daughters health.

I can't add anything more than Scottie has, and I'm glad that you've found us!

Take care of those little angels, and I hope that we can chat one day soon.


Patze

[Joe S.]

Reports like this leave me very sad. Some of us have put what we take in our signature line.

Talk to your Dr about supplements and dosages for children.
omega 3, inositol, B12, C, Magnesium, daily vitamin, Alpha Lipoic Acid, Acetyl L carnitine, D3
yogurt, Tart Cherry Extract

Teach her how to meditate.
Find a comfortable position. With your eyes closed look to the top of your head. Breath in and think "I am", breath out and think "calm" try to do it for 15 min.

Reiki can help her self manage pain in her eyes. Reflexology can help with pain management. I believe that this should be taught to grade school students.

Carrot juice 6-8oz a day can help with endorphin creation. Endorphins are your bodies own pain killer. Laughter can also trigger endorphins.

Tia Chi can help with range of motion and overall health.

[Shani]

Hi Tracey.

I'm a young adult, being 17 soon.
And I've got sick at the age of 14.

I don't only have Sjogren but my first diagnosis is Lupus.

I may be a bit older than your child but pretty much the same age.

I'm glad they atleast managed to diagnose that quickly, before any other symptoms would show up-
Such as dry eyes, mouth, jointpain-inflammations, etc.
Or before any other manifestations would show up.

I see that people here already have given great advice.
You can always send me a pm if you have any questions.

It's always good to seek a second opinion if you feel that your current Rheumy isn't really helpful or may not be sure what he's dealing with.

It's your child after all, she deserves the best health care and treatment.
But it's good that they atleast put her on Plaquenil and steroids already.

[cremer]

Welcome to Sjogren's World Tracy.

I suspect my daughter to have Sjogrens, she has many signs, but being 15 refuses to see the doctor. At least you and your daughter now know and together can learn to understand and live with this syndrome.

Best medicine for her is yourself, just being there and understanding is such a huge part.

Both of you take care.

[Dry1000]

Hi all - I'm new here. One of my 10-year-old twins was recently diagnosed with Sjogren's, after a year-long stint of bloodwork and a surgery to remove a mass in her salivary gland, which turned out to be the actual enlarged gland (and not a lymph node as they feared).

She is now on plaquenil and steroids to bring down the inflammation, which has been moderately successful - but not totally.

Does anyone here have a child with Sjogren's who can share their journey with me?

We're going to see a doctor in NY who is on the Sjogren Foundation's board for a second opinion, because it seems to me that her pediatric rheumatologist still isn't sure what we're dealing with.

My daughter has NO Sjogren's symptoms aside from what they found in the blood work. No dry eyes, etc. And she has never been in any kind of pain - just presented with a big lump in her salivary gland about 18 months ago and we've been on a roller coaster ever since.

       Is the doctor Steven Carsons? If so, he is the best. I have been seeing him for about 2 years and he has helped me feel sooo much better, his office staff isn't so great but he will know what to do with her. Good Luck!

[CAT1962]

I am getting ready to have my 13 yr old tested for SjS. She has eczema since a toddler, and has constant dry eyes.

[Zeppelinsmum]

Hi there, i have been looking all over the internet for a thread like this. Sjogrens seems to be quite uncommon in children.
My 5 year old son was diagnosed with Sjogren's Syndrome 5 days ago. He has no symptoms other than recurrent parotid swelling, they only tested him as his father and i also have Autoimmune diseases (not Sjogrens).

i was looking to connect with other mums, id like to know, how was your child diagnosed? what symptoms do they have? I am very new to this!!
Thanks x

[Joe S.]

Welcome Zeppelinsmum. I do not believe that AI diseases discriminate by age. I find it sad when they appear in children. These diseases take so much of the joy out of life for adults and they affect children in a similar manner. The challenge with children is that they do not know what is normal and what is not (dry eye).

A friend of mines nephew has MD. He tried the supplements Acetyl L Carnitine and Alpha Lipoic Acid. This helped him to regain muscle mass. Mayo called him back three times to verify the results. They are now doing a long study. I started using these two after reading a late 90's article in Readers Digest as to their effectiveness in helping with brain fog. I found they helped with other AI symptoms. Please consult your health care profession before trying anything new.

[katyjo]

Hello,

My 9 year old started having off and on pain in her limbs when she was 8.  My friend told me that it was probably growing pains and that she had experienced it when she was a child.  My 9 year old told me that her eyes and mouth felt dry a few days ago.  She's going to see her pediatrician this week.  I found out about my dry eyes when I was in my 40s and fortunately, I have been able to have a functional life medicine free.  I didn't know about SJ when I was planning a family.  I really worry how an 8 year old is going to handle this condition.  She seems to have it worse than me.   

[sjogrens53]

I am "older" now--age 54--but, am pretty sure that I had sjogren's as a child.  Had lot's of fatigue,  joint and limb pain (especially shoulder aches), and sensitivity to the sun.  Occasionally, the gland(s) under my chin would swell.  When I was diagnosed (around age 49), it explained a lot of things from my childhood.

[katyjo]

sjogrens53, thank you for posting.   That is a surprisingly long time to be diagnosed.  Maybe you're like me, have an aversion to seeing doctors.  I believe a big part of me not needing medications is because I am able to avoid stress and do meal planning.    I don't think my kid will be able to avoid the stress of school homework and exams.     My little perfectionist and is often grumpy afterschool.  I realized recently, it's probably because she doesn't feel good.   I am afraid with SJ she would not be able to do well as she would like to--too tired to study, headaches, etc.           

[cremer]

I forgot all about this thread but have just took my son to hospital regarding a neck problem and they are testing him for an AI disorder as well as his WBC count. He is only 11 years old. As i said before my daughter has all the symptoms as well and she is 16, but doesn't want to go to the docs.

[Joe S.]

Oh cremer, I hope he does not have this.