Suggestions for Dr. Appointment Monday

[FarmMom]

We will be having our first follow up appointment on Monday since the diagnosis of Sjogren's a few weeks ago.  It's been a little of a rollercoaster with symptoms coming in like a lion.  Many of you have been very helpful on medications to review with the Dr. and items D can be adding to him everyday life to make it better.

I want to make sure we go through all the symptoms he is having, some of which we may not even be aware of.  Joint pain, dry eyes, dry mouth, no weight gain, tired - those are the easy ones to tag.  He was complaining in May about light and sound - mostly at night, I haven't asked him much about it since.  Getting info out of a 16 year old boy is like trying to squeeze the juice out of a carrot with your hand.  If anyone has ideas on helping me play the Sherlock to uncover and expose those things I know we are overlooking because we are sooo new to this.

So, I have 48 hours to ferret out all the info I can out of him, I am hopeful that with all you playing Dr. Watson I will be successful in my mission.

[iraisin]

oh boy. you've got a chore on your hands. What is typical teenage hormone stuff and what is sjogren's. hmmm.

Forgetfulness (could be both or either/or)
fatigue (could be typical non-comformity of a teenager not wanting to do chorse)
hair loss or lack of hair growth
thyroid (energy/metabolism issues)
dry ears
dry sinuses
overall muscle pain
tingling in limbs and fingers
confusion/comprehension issues during a conversation

There's just so many things and some may be normal for his age.

[slccom]

Fingers/toes turning white with cold exposure; needing more sleep than normal (I required 10 hours a night when I was young), lots of cavities, joint pain that moves around, depression, lots of sinus infections, "ropey" eye mucus in the mornings rather than crusted tears, "growing pains" (actually joint pain that the kids is "just too young to have arthritis").

I'm so sorry band camp went bad. Do remind him that there are lots of concert bands looking for musicians. We get to sit down there!

Sharon

[sjenny]

I'm so sorry he has been hammered with this, especially at his young age.  Would it be possible for him to try a gluten free diet (yeah, I know, what about pizza!!!) for a few months (ok, 6 months)?

Also, I found coconut milk and virgin coconut oil to be extremely helpful, along with Evoxac for mouth and sinuses and Restasis for the dry eyes.  Coconut is anti-viral, anti-fungal, anti-bacterial, anti-parasite and very soothing to the endocrine system.   How about coconut milk milkshakes!

[slccom]

Depression in men often manifests in extreme irritability, rather than sadness. Boys, too.

Light and noise sensitivity suggests central nervous system involvement.

Personally, I wouldn't get him on a gluten free diet for a while. He has a lot to adjust to, first. And a lot of people embark on the search for the magic diet that will cure them (not just sjoggies...). This can be very expensive, and futile, and unless the magic diet really makes them feel a lot better, just adds to the general feeling of misery.

Sharon

[sjenny]

The magic diet of meats, fruits and veggies won't hurt anybody and is very healthy for all ages.  It worked for me and spared me from a great deal of misery and discomfort from dry mouth, dry nasal passages, irritable bowels, acid reflux,  and fatigue.  I was a lot more down in the dumps when I felt ill.

What has anybody got to lose by trying it? 

As far as cost goes, I don't recommend that anyone buys the processed gluten free crap - it raises blood sugar higher than wheat. 

You may be pleasantly surprised at how much less your grocery bill will be when you are not paying $4 a box for cereals, crackers, snack cakes and cookies. 

[iraisin]

So how did the dr. visit go today?

[mshistory]

I hope his doctor visit went well!

There are quite a few GF cereals, actually - the Apple Cinnamon Rice Chex cereal is so good! But having him tested for celiac disease (there are several blood tests that can help lead to a diagnosis) is a good idea. There is a higher incidence of CD in people with SjS (and probably all AI diseases). Until he is tested though, he cannot stop eating gluten as it will alter the results of his tests.

To be perfectly honest, if he tests negative for CD and he does not have a suspicion of gluten sensitivity, this is not a diet I would push on children or teenagers. It is really hard to follow so strictly for kids. Both of my daughters are so young, I can still strictly control their diets. But I do worry about them as teenagers and especially college-aged adolescents when they are impulsive and their thought processes are... well, a lot different than an adults  (They both have confirmed CD, so suddenly binging on gluten can actually make them quite ill - it can even be fatal, though it's rare).

[FarmMom]

Dr. appt went well, he thought D looked good, concerned about how fast he dried up, but since the meds seem to help, he doesn't want to disrupt his life totally.  We took in the stuff for his physical so he could play high school sports and the Dr. wouldn't sign it while we were there, said he would have to think about it. Boy was he a fun kid to bring home after that.  Dr decided the next day to pass him on his physical so he could play Varsity soccer, he does have to go to physical therapy to work on the knee and he has to pass Dr exam every 60 days to continue to play.  Of course if he has remarkable pain he has to stop.   Thanks everyone for the caring and huge news...Dr. Baer accepted him as his first under 18 patient at the Sjogren's Department at John Hopkins.  We go August 15th!!!