Author Topic: Pediatric Sjogrens in Boys  (Read 3989 times)

FarmMom

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Pediatric Sjogrens in Boys
« on: July 11, 2012, 02:39:15 PM »
My son was diagnosed with Pediatric Sjogrens, it started last month - in 24 hours he developed  a 3 mm mass in his Parotid gland, eyes filled with blood and a 103 temp...very exciting night in our house! Last week the diagnosis came through...rare that it is a pediatric case to start with, even more so since he is a teenage boy. He already has the arthritis in both feet, right knee, both shoulders and his lower back (I feel so bad, I've been telling him he has growing pains).  Took blood test for Celiac today too as they've had him on an 8000 calorie a day diet and he hasn't gained a single pound in a month! Anyone out there with a similar situation? The rheummy doctor who made the diagnosis has never had a pediatric/boy case.

gardenlover

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Re: Pediatric Sjogrens in Boys
« Reply #1 on: July 11, 2012, 04:50:20 PM »
Wow, that is so sad to hear of a case at such a young age.  I'm at a loss for words.  I guess I'd start with getting second, third, etc. opinions.  You'll find this a good source for some information.  Does he have dryness?  Where are you from?  I'm sure someone on here will be able to suggest a good doctor for children.  Keep us posted.  Best of luck!! 

FarmMom

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Re: Pediatric Sjogrens in Boys
« Reply #2 on: July 11, 2012, 05:17:22 PM »
Thanks for the reply, we are here in hot No. California (106 today!!).  He has everything but the dryness!...as the Dr. said...Yet.  He said the cases with pediatric boys is so small he can't even begin to figure what the prognosis may be, or how his symptoms may develop.  That's why I am hopefull that someone on this site may have some insight.

Joe S.

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Re: Pediatric Sjogrens in Boys
« Reply #3 on: July 11, 2012, 05:41:03 PM »
I am so sorry to hear this. He is facing a lot of health challenges from your post.
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iraisin

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Re: Pediatric Sjogrens in Boys
« Reply #4 on: July 11, 2012, 05:53:12 PM »
do some research on Johns Hopkins Pediatric Rheumatology...it's a place to start.

My heart goes out to you and your boy, FarmMom. I pray you find some expert help and your boy finds much comfort and ease of pain and symptoms. I know your heart is breaking for him - find your strength and stay strong. Pray and breathe.

eye2dry

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Re: Pediatric Sjogrens in Boys
« Reply #5 on: July 11, 2012, 08:01:13 PM »
Hi FarmMom.

I am sorry to hear your son is suffering.....he should be out about and living carefree at 13...not in pain.

How was he diagnosed with sjogrens? positive labs, lip biopsy or just symptoms?
Has he been given any medications to help him?

I hope he will be spared a Celiac diagnosis but it is another autoimmune disease and it would not be unusual to get another AI piled in on the sjogrens at some point in the future.

keep us updated....best of luck to your son and hope he gets treatment and relief soon.

eye2dry

Cindy

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Re: Pediatric Sjogrens in Boys
« Reply #6 on: July 11, 2012, 08:38:10 PM »
Welcome to the forum. Im so sorry your son has sjogrens. Kids should not have to go though this.  I have google pediatric sjogrens before and dryness is usually not as bad as it is for adults. I cant remembered if it was in the facebook sjogrens page or another group but I have read posts about pediatric sjogrens kids where plaquenil helps them with most of their symptoms and pretty much live a normal life. I really hope this is the case of your son.

CINDY 

irish

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Re: Pediatric Sjogrens in Boys
« Reply #7 on: July 11, 2012, 09:28:12 PM »
I am so sorry to hear that you son is suffering like this. Life can be so hard!

I am guessing, but I would bet that years ago he might have been diagnosed with a form ofo rheumatoid arthritis. It is good that they are checking him for celiac as trying to eat 8000 cals a day must have been terrible.

It may well be that if he has celiac and is put on the diet his arthritis will calm down. My hubby, son and 4 year old grandson are all on the gluten free diet for celiac disease. Celiac causes so many issues also and it is possible that the gluten free diet will be a huge blessing. It is not that hard to follow anymore as so many foods are labeled.

Good luck on this and please keep us posted. Irish

Bucky

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Re: Pediatric Sjogrens in Boys
« Reply #8 on: July 11, 2012, 10:18:55 PM »
FarmMom - welcome. 

I'm sorry your teenage son has been diagnosed with Sjogrens.   :(

We've had other young people dx'd on this forum - although, I don't think they are active members right now.  The two I'm thinking of, are female.

Have you visited The Sjogren's Syndrome Foundation website?  They might have some information for you there.

Unfortunately, many of the doctors don't know how to treat us adults with Sjogrens, than alone a teenager. 

If your son should complain of being tired and fatigued all the time - please believe him.  He will have to learn to pace himself and get rest.   Especially when the new school year starts - all the school work and activities might make him very tired.  I hope he is a good communicator with you, so he can keep you updated on how he is feeling physically.  You, of course, don't want to baby him - but, you also don't him to completely exhaust himself either.  It's a process - one that will be discovered by trial and error.

I'll keep an eye out for any pediatric information I can find for you.

Bucky
Come sit a spell and join in live chat - we serve non-fattening, zero calorie goodies while discussing all kinds of things.  ;D

http://www.sjogrensworld.org/chats.htm   (find our chat times here!)

FarmMom

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Re: Pediatric Sjogrens in Boys
« Reply #9 on: July 11, 2012, 11:35:48 PM »
Thanks to all of you for your kind words of support.  He is looking over my shoulder right now...all 6'3" of him.  Ok, so he walked away.....It's hard to see the MVP JV Soccer player go through this.  It is the start of a new journey! He took a big 4 hour nap today and couldn't understand why he still feels so tired.  At this age they think they are invincible.  Looked up Venus Williams to give him hope that top level athletes can still perform...but his feet, you can't even touch them, he just plays through the pain.  The hardest part I think even for the Dr. was to look this athlete in the eye and say, "son, whatever you thought your life would be, you need to decide what it will be, and you need to decide on something that won't require you to be on your feet." He won't even talk about it, just said take him to practice.  Can't fix it, so off we go. Sorry to whine, but you're right, tonight this mom's heart is just breaking.

Joe S.

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Re: Pediatric Sjogrens in Boys
« Reply #10 on: July 12, 2012, 01:27:28 AM »
While I am glad that you found us, I do not like it than anyone else should have to deal with this health challenge. I am more frustrated when I see younger people with this illness understanding that there is so little that is being done to help us. I believe that the medical model for Auto Immune disease is wrong. I use alternative therapy because of bad reactions to Plaq and MTX.

Sjogren’s – Dry eyes, dry sinuses, dry mouth, dry skin, and dry bum.

You may or may not be faced with other health challenges related to this disease that the doctors do not tell you about. Auto Immune (AI) diseases love to bring their friends. If you have one, eventually you will have more than one.

I like also suggest that people with AI diseases read “Spoon Theory” on the web. It helps to explain how our lives have changed and helps us understand how we can manage the changes to our lives.
http://butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf

1. Don’t Panic – Anxiety can make your symptoms worse. I suggest that you read and practice the exercises in the book “Feeling Good” by David Burns. The book is on Cognitive Behavior Therapy (CBT). It has information on dealing with depression, grief and other mental health issues that you may face in living and managing this disease.

2. Breathe – For as long as you live always remember to breath. When we are in pain, our muscles go into a splinting action. I know that it is hard but we must remember to breathe through the pain.

3. Meditate – Meditation can help you deal with pain and symptoms. When you can do it for 15 minutes you will be at that stage. Here is a very easy meditation technique that will help you as it has helped me. Find a safe comfortable position and close your eyes. With your eyes closed, look to the top of your forehead. As you breathe in, think “I am” as you breathe out, think “calm”. Repeat as needed. Meditation can be as good as sleep.

With Sjogren’s we tend to have a lot of infections so wear your “polar fleece mumps scarf” to bed. This will help your body to fight these infections. This link will help with the gland issues: http://www.chakraforce.com/Tonations.html#228.

Omega3, D3, C, Multivitamin, Probiotics seem to provide general support to our bodies when we are facing AI diseases. I like to add an 8oz glass of carrot juice every day to help my body generate endorphins.

I take what I call the Fabulous Five supplements and I wish I had known about them when I got my first AI disease. They are Alpha or R Lipoic Acid, Acetyl-L-Carnitine, Biotin, PQQ, and Co-Q10. As with any drug or supplement, do your own research and consult with your healthcare professional.
Sip-Swish-Swallow are the three S’s of Sjogrens.
bkn C4 & C5, herniation's 7 n, 5 t, 4 l, Nerve Damage
Lisinopril, Amlodipine, Pantoprazole, Metformin, Furosemide, Glimepiride,
Centrum Silver, Cinnamon, Magnesium, Flaxseed, Inositol, D3, ALA, ALC, Aleve, cistanche
Reiki, reflexology, meditation, electro-herbalism

mshistory

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Re: Pediatric Sjogrens in Boys
« Reply #11 on: July 12, 2012, 05:27:48 AM »
Oh I am so sorry. I have two young children myself (5 and almost 3) and they have both already been diagnosed with celiac disease and I fear some sort of connective tissue disease (most likely lupus based on health issues she has already had) is in my older daughter's future. It is absolutely heartbreaking.

BUT... celiac disease, at least,  is truly a lot easier to manage than it seems at first. I was overwhelmed when they were first diagnosed, but now it's just "normal" to check labels, and we've found great replacements for all of our favorite foods. Duncan Hines has come out with gluten free cake mixes, brownie mixes and cookie mixes... I mean, it doesn't get any better than that! lol

GF diet has really cut down on how often she complains about stomach aches, headaches, and body aches, so hopefully, if your son also has CD, a GF diet will help with some of the pain he is experiencing as well.
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Bucky

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Re: Pediatric Sjogrens in Boys
« Reply #12 on: July 12, 2012, 10:06:46 PM »
FarmMom - I also wanted to tell you to watch for any signs of depression in your son.  Here he is a strapping young man and he's been diagnosed with this weird disease called Sjogrens Syndrome.  Being the age he is, they worry about what their peers think of them.  This is all so new to him and it does take time to grasp what is going on, what his limits are, what things he might need to modify, etc. 

Being a teenager and wanting to fit in at school and among their peers having something, (in this case, Sjogrens), sets them apart from his friends.  After all, a teenager is like the Energizer Bunny - they keep going, and going, and going.  Yet, none of his friends have Sjogrens.

Especially since soccer is so physical - and he's the MVP - he has a reputation to uphold.   ;)

Like Venus, he will find that some times he might not be up to snuff to play game, after game, after game.  Fatigue is very real and can really knock you for a loop.  I hope you will have the opportunity to talk with his coach(es) and kinda give them a heads up on energy level, etc.

Many of us here also have thyroid issues.  When the thyroid is outta whack it can cause extreme fatigue too.  It might be something his doctor might want to check.

The vast majority of us here are well beyond the high school years, though we do have college age members among us - but, we do "get it" when we have to deal with Sjogrens and work, family, friends, extra activities, etc. 

Be sure and read the Spoon Theory that Joe posted - it will help you and your family understand a little about our world living with Sjogrens.

Best wishes to your son.  He's welcome to post here too and ask any questions or concerns he might have.  As a mom myself of a high school, teenage son, I know you only want the best for your son.  Coming here and learning all you can about Sjogrens is a good place to start.   :)   ;)

Bucky
Come sit a spell and join in live chat - we serve non-fattening, zero calorie goodies while discussing all kinds of things.  ;D

http://www.sjogrensworld.org/chats.htm   (find our chat times here!)

aussie mum

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Re: Pediatric Sjogrens in Boys
« Reply #13 on: July 13, 2012, 02:49:34 AM »
Hi FarmMom,
My heart goes out to you and your son, as my family has been on a similar journey. My daughter was diagnosed with SJS at 17. She had been unwell for about 6mths with extreme fatigue and many other symptoms which of course we didn't realise were related. She was referred to an immunologist and was "lucky" to be diagnosed virtually straight away with positive blood test results. At least I can be grateful that she has not spent years and years searching for answers.

To be honest, dealing with such life changing news has not easy for her. Like your son, she was very active with sports, playing netball & soccer and at 17 was keen to enjoy a great social life with her peers as she was about to commence her last year of high school. Unfortunately, having SJS did affect these things.

You have already been given some great advice from people with far greater knowledge than me, but I have a few more points to add.

1) Find a knowledgeable Dr that you both like. Your son will be seeing a specialist for a long time and it is a lot easier if your son likes & trusts them. Hopefully your 1st Rheumy will be the one.

2) Discuss with your son who he wants to tell about his diagnosis. My daughter wanted to keep things a secret, whereas I was opening up with all my friends to share my burden. She was very upset with me. It is important to speak to your son's school and sports coach. They really need to know what's going on and hopefully can come up with a plan to help him when needed.

3) Keep a watch on depression. My daughter developed a severe depression once she finished school at the same time she also developed Thyroid issues. We're not sure what caused what but her depression did improve once she started thyroid medication... coincidence...I don't know.
Please get your son's thyroid levels checked now, especially with his lack of weight gain.

4) Try to gently encourage other hobbies than active sport, maybe he could coach. He could be a great musician in the waiting. I could be wrong but I think Seal has Lupus.

5) Try not to treat him as an invalid. Sure, there might be times when he is very unwell, but it is important that he do the normal kid things as much as possible, both the fun things and the not so fun things like chores. (I wish I'd taken this advice)

6) Look after you. I suffer badly from motherly guilt, I had one counseling session and really wish I had more. The tools you pick up in counseling will help your entire family.

My daughter is now nearly 22. She works full time and now plays one weekend sport when she can (she seems to get injured quite easily now). She now reads her body better and will usually avoid non essential activities when she needs to rest... well you're only young once.  ;)

Good luck to you both.
Aussie Mum
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