16 year old Son Fast Crash

[FarmMom]

Hi everyone, my 16 year old son has taken a fast crash in symptoms.  He went from no dryness to eye distress in 10 hours and by the time I got to see him this afternoon his mouth had gone dry too. His feet continue to feel worse.  He is at band camp, when he called last night with the eye problem.  Fortunately Dr. called me today and told me about eye gel and tears to take him and suggested that if his eyes dried that quickly that his mouth might follow...he was right.  Thanks to Sjogrens Foundation I had just gotten the info on dental/mouth care so I had the list of items to pick up for him.  He just goes from nothing to BAM.  He was fine May 4th and felt like dying May 7th, nothing about this is slow progressive for us.  If anyone can advise me on what might fail next I would appreciate it so I don't sound panicked when he calls.

[Ark mom]

I feel so bad for him!  Band camp is supposed to be fun.  I'm so sorry!  This happened to me, too, that my extreme eye and mouth dryness came on very suddenly.  I was in complete agony.  This was several months ago, and I know now that this was just a bad flare.  My symptoms, while not gone, have abated somewhat so that I am not in agony.  Hopefully this will be the case for him as well.   

Is he out in the sun a lot at band camp or having lots of physical activity?  This could be aggravating his condition.  Until my medications are better at controlling things, I am totally out of the sun and not playing any more tennis. 

I sure hope he gets feeling better soon.  Just remember that it is probably just a flare up and this is not a permanent state for him.  When it was happening to me, I thought I was dying.  Few months later, after some good medications, I am living almost normally.  It will happen for him, too.  Lifestyle modifications are in order for sure to help control flares and progression.  Peace and love! 

[Joe S.]

This disease seems to progress differently for everyone. For me, the gland failure may have triggered the broken femur.

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.

[Ark mom]

Farm mom, how is he doing today?  And how are you?  Thinking of you guys.....

[4Kids]

He may need steroids to help turn off the attack. It may not help the saliva or eyes though; he may require Salagen for that and Restasis.

Poor kid.

I had a very bad virus which triggered an attack like he is having and it took at least a couple months but it did get better, w the meds.

He should have a sugar free mint or zylitol melt for his dry mouth. That may help a bit.

[gurs]

Im wondering if the allergies causing alot of this? I seem to feel 100% worse when mine do, which has been most of the summer?

gursie

[mshistory]

Allergies make my dryness symptoms worse too - and the unfortunate thing is antihistamines tend to be drying! GAH!!! But the sun is also a huge trigger for me to start flaring, so I agree about the sun. Mineral sunblocks are more effective than others (zinc oxide and titanium dioxide I think are the names to look for... ). My dermatologist recommended I use a mineral sunblock every single day no matter how much I am going to be exposed to.

Poor thing, I hope he feels better.

[FarmMom]

You have to appreciate the resilience of a teenage boy. Eye gel worked wonders overnight, carrying his eye drops with him, along with the rinse and toothpaste, I gave him Biotene gum and sugar free candies to suck on, and he finally put on the new shoes - which aren't as cool as his others, but miracle...his feet feel better already by his lunch break today.  Yeah, and that insole in the one shoe where he has the arthritis in his knee, did you know that helped.  Guess this mom and Dr. and smarter than the kid thought! Going to see him play tonight in the Brass Ensemble.
Through Healthnetwork Foundation I was directed to uptodate.com which has all kinds of info, I feel like I'm studying for my college finals all over again.  John Hopkins should have received his file today, so wish us luck on getting in to see Dr. Baer.

[Woolygimp]

Try to get your son on Cellcept and Plaquenil would be my advice.  They do a great job of controlling symptoms but as the case with me because I waited nine years, there's almost undoubtebly permanent damage to my glands. 

There's a medical study that showed that Cellcept restored glandular function remarkebly well if used quickly enough before the glandular damage set in.  And I think it's a safe medication, yet to notice any side effects from it.  Tons of people w/ transplants use it and it's well tolerated by most.

Sjogren's can also cause Fibromyalgia and some other nasty things... Don't sit around and let it do it's things, controlling the symptoms isn't the way to do - try to control the disease as quickly as possible.

Btw, Evoxac is a must have regardless as to whether you go with disease modifying drugs.

[iraisin]

I have no idea what just happened, I typed up a nice little list for your shopping trip and some good guidance and poof, it just dissapeared. One more time...

His sinuses may dry out and have a hard time sleeping at night and start getting headaches. Get him some NasoGel for nighttime use (or daytime, depending on severity). No nose spray stuff, those are addictive, he just needs moisture.

Aleve and Ibuprofen, give him a little pill box or something to keep on hand.

He'll also have to get gentle cleanser for his face, don't let him use that "guy" soap anymore. It inevitably gets in the eyes. I use Cetaphil gentle cleanser (not the special stuff for eyes, it's even harsher than the gentle cleanser).

These are quick purchases while he's in band camp to help him get through it.

[FarmMom]

Thanks much for the shopping lists and meds to go over with the Doctor. After my panic phone call to him on Wed. his secretary was on the phone to me Thursday morning setting an appointment for D on Monday.  Then he called again Friday with some new homeopathic type lozenges for me to pick up and take to him at camp.  At least I know D is in the forefront of the Dr's mind and he's not adverse to alternative types of medicines.

Right now D uses Neutragena on his face, we are all sensitive to the smells in the heavily scented stuff so fortunately for me no Axe in this house!! Do you all think the Neutragena is too drying?? So far he has been blessed with fab skin, with Sjogren's affecting everything else I would hate for it to cause acne too!! Poor kid doesn't even shave yet...although he's finally getting fuzzy. Any thoughts on shaving cream, I know those can be drying too.

He's been taking Naproxen for his pain every morning and night.  I'll ask the Dr. about how much Aleve or Ibuprofen we can add during the day when he needs it.

I like the idea of the Cellcept to help restore the glands, the nose gel makes sense like the eye gel at night, I will need to look up what Evoxal is when I get off here.  Dr. said he was going to have to put him on something like Plaquenil since his symptoms not us YET! are still large and in charge.

Anything else my Sjogren warriors can think of that is a must to go over with the Dr. on Monday?  This is really the first appointment since the diagnosis.

Does anyone else laugh everytime they do spell check on here and it highlights Sjogrens as unknown...maybe spell check is smarter than we think. 

[iraisin]

Here's a link to some advice on OTC and meds for your review

http://www.uspharmacist.com/content/c/10376/?t=mental_health,women's_health

Glad your son is getting in to see dr. soon. I think that will help BOTH of you very much. Sorry for you're heartache and stress with this. I know it must be hard to watch our babies go thru such a tough time.

[slccom]

Naproxin is tough on the kidneys. Long term, there are other anti-inflammatories that are effective and easier on the kidneys. He'll probably have to be on them long-term.

He is a brave kid, and he'll need to be. Being sick so young, and as a young man, is going to make him grow up really fast. What does he play? Playing a wind instrument is really good for the lungs. He might be able to march,too, with proper foot support. I would ask the doctor how good an idea that is, but generally exercise is good for joints with arthritis in them.

He has a great Mom, too!

Hugs to you both, although I know he won't want to accept one....
Sharon

[jazzlover]

I 'm very sorry to hear about your son.  I hope you can get excellent care for him.

Music will help your son get thru this.


My husband is a former band director. We were both in band... he plays all of the woodwinds (plus keyboards and others)... I played clarinet.

I do know band camp is strenuous!!! Especially if he is marching in the heat. He must be totally exhausted by now. It would be sad to give up marching, but at least he can escape with his music and it can be a lifelong comfort.

PS .. I am anxious to hear which instrument he plays!