Delicate skin

[LA1989]

Do any of you have problems with very delicate/sensitive skin? My son (16) has skin that tears, cuts really easily. For example, yesterday he opened a soda bottle. It left little shallow cuts all along his index finger where he put the pressure on the lid, and the whole rest of his hand was red and sore. It sort of looked like he had had some major friction on his hands rather than the simple action of just opening a soda. This has been going on for a couple of months with him....any ideas?

[CHRISTYDRAKE]

Thanks for the info. We will definitely give it a shot.  Sometimes he wakes up with dried blood on his face from his bleeding lips!  He would love to get rid of his dry lips.

Christy

[Kavbear]

His dry lips might be FROM the Carmex, I worked for a nutritionist/ holistic doctor and used to always have chapped lips. I also used Carmex, anything that has petroleum in it (I am also thinking mineral oil) will pull moisture out of your lips to sit on the surface and it becomes a viscious cycle that does not clear up.
I switched to something without them (including lip gloss, leaving my favorite lip gloss for special occasions because it REALLY is the perfect color) and they cleared up as long as I have enough fluid.
My uncle was a chapstick addict and as soon as he switched to Burts Bees his lips cleared up and he no longer uses it and he does not believe in "alternative medicine", I think he did it to prove me wrong (ha ha....something about he who laughs last comes to mind)
Try switching to something like Burt's Bees or Alba (or anything without Petroleum or mineral oil) and see if his lips get better.

[CHRISTYDRAKE]

Interesting, Cody's stretch marks on his legs are deep red and he goes through Carmex for his dry lips like no tomorrow.  I think I'll be looking into more info on this topic.  We don't go back to Cleveland until January, but I might email with a couple of questions regarding this.

Christy

[LA1989]

Thanks for your post! That's interesting what you said about your lips. Nick's lips get very dry, too.
We are waiting to receive the orders for the cortisol test. Our primary care said she would send them out to us this week. So we'll try that next week.....
I am wondering if I should ask about the endocrinologist even though we have our appt with Dr. Rowe next month. I don't know if he'll ask the questions the endo would ask....
And it looks like lyme disease is going to pop back on our radar, so maybe the endo is the way to go...

[Kavbear]

I think this was mentioned but what stuck out to me (and I am far from knowledgeable outside my own issues and I forget more then I retain with them) was those stretch marks are they red? I can't remember what the "issue" was but red stretch marks was an "indicator" something was not right with my adrenal glands (Cushings or the opposite of Cushings maybe)
On top of POTS my adrenal glands were not functioning correctly (mine was due to over use of steroids, we think) and at Mayo I was sent to see an endocrinologist because they automatically test for cortisol and mine was almost nill and then once in the appointment and after a repeat cortisol test (still almost nill) I had a cortisol challenge test.
The endo was also concerned that I had had anemia issues before my period and have always bruised easily.
He also did things and asked questions I had no clue were even important, and wish I had gotten my autonomic testing back before I saw him since know through my own research I know the adrenal glands can be involved in this AD and would have had many more questions.
We all have such varied "symptoms" that I have taken the line its better to rule out something and hopefully they will find out what is causing my POTS. If it were me I would ask to see a endocrinologist if it were me.
Lastly if he is slightly dehydrated or hypovolemic I have read your skin tears much easier and the one thing I now KNOW for sure is I am hypovolemic and when so my skin does all sorts of weird things and my lips get so badly chapped they rip open and don't heal (and I drink enough fluids combined with a high sodium diet to fill a pool)
Good luck!

[Heiferly]

LOL, yeah, I'd be pretty trusting of a recommendation from Dr. Rowe as well.  :-D  I hope everything goes well with that appointment!  As always, keep us in the loop.  I am eternally in awe of those of you with the tenacity to keep fighting for answers and good treatment for your children.

Ooh, speak of the devil ... my mom just got here from out of town!!!  YAY!!  (Never too old to be taken care of by Mom!!)

[Heiferly]

If you want to find out what tests are available at your hospital, I can give you a list of autonomic tests to inquire about.

[MollieRose]

This is all very interesting to me. I wouldn't say my skin is necessarily extra delicate, but it seems to peel *a lot*.It happens no matter if I'm dehydrated or full of fluids. My lips are constantly chapped/peeling and my fingertips peel quite a bit. I didn't know that there was more than one Sinai either (they just call it "Sinai" here, no Mt. in front of it), I'm learning new things all the time. Sinai is the hospital I was at when they did my tilt table test though, I wonder if that's about the extent of what they offer for autonomic type testing?

[LA1989]

Thank you for the warning! :)
I am not anticipating there being a autonomic lab there. We are actually going to see a pediatric neurologist who was recommended to us by Dr. Peter Rowe, who we will see next month. We have had trouble finding any ped. neuros around here who don't have an 8 month+ wait and Dr. Rowe recommended one of two docs at Mt Sinai so he could be seen before our appointment with him. I am assuming these docs have experience w/ dysautonomia since Dr. Rowe recommended them, but you know what happens when you assume. ;-)
It's really just a rule-out kind of appointment so they can be sure there is nothing major going on in his head causing his symptoms.
But I'll definitely let you know if I find out something new!

[Heiferly]

Just a note regarding there being more than one location of Mt Sinai (this also applies to Cleveland Clinic and Mayo) ... if you are going for autonomic testing these hospitals do not maintain autonomic clinics except at their main locations.  As I understand it, Mayo may have had at least a partial autonomic clinic at their Arizona facility but they shut it down.  I don't know about the Baltimore location of Mt. Sinai, but the Florida location of Cleveland Clinic has been VERY hit/miss with regard to patient reports of encountering specialists there who are absolutely *awful* with dysautonomia.  Obviously, this is disappointing considering they have some of the nation's top experts at their Ohio location.  

I've never heard a single patient report here on Mt. Sinai Balto, but I just wanted you to be aware that just being affiliated with the same institution isn't a guarantee that they will have equivalent facilities or even knowledgeable doctors (unfortunately).  I know Cleveland Clinic's Ohio autonomic clinic will be rather frank about the Florida location not being equipped to do what they do, so you may want to ask the NY location about the Baltimore location to see what they say.

If you find out they DO have a full autonomic testing facility that we've somehow been missing, please send me a direct message so we can update our health pages accordingly!!  (Oh, what great news it would be to add another hospital to our tiny list!)

[LA1989]

thanks! I keep thinking about this JHS/EDS thing. Nick does not seem particularly "bendable" to me. When the cardiologist evaluated him for Marfan's he bent his thumbs back (they did not reach his wrist) and had him bend over to look at his spine. I know he can't even straighten one elbow out (he broke it a year and a half ago on the trampoline) but I haven't looked at the other. And I haven't looked at the knee thing. But it's certainly not something I've thought of--him being fexible, that is. I don't know.

He does have ears that stick out a bit--with the top part bigger than normal. His mouth was very crowded, which has been fixed with braces. And his eyes do turn down just a little bit in the outside corners. I noticed that a while ago and just thought to myself that neither my husband nor I have eyes like that. It's not extremely noticeable, though.

We'll see what happens, I guess. Yes, I am curious to see what the cortisol levels will be. I haven't heard back from the pc doc yet.
"I would think....." is a funny idea, isn't it? It seems like some of these tests/evaluations are obvious things to do to us, but not to so many doctors...

I'm so curious to see what you find out in November. You are an awesome mom, by the way, if no one has told you that lately!

And regarding the neurologist, am I the only person in the world who didn't know there were more than one Mt Sinai hospitals??
My husband was born at Mt Sinai in New York, which is the only one I've ever heard of. We've worked our week around a LOOOONG day trip to New York to see this guy. Turns out (good thing I looked at the referral!) there's one right up in Baltimore! So our week is much easier-especially on Nick.

[enzymelover]

There's a good chance that Casey will be diagnosed with JHS/EDS when he sees the geneticist in Nov.  He has become much more "bendable" this year. He really is very hyperflexible at the knees and ankles. Still, I think in this case, it's because of his severe lack of growth hormone, due to it's affect on collagen and connective tissue. Maybe they will want to wait until after he starts growth hormone shots to test for a genetic defect.

I know Nick grew a lot in a very short span of time, and I know rapid growth can deplete cortisol very fast. Casey may need to up his Dexamethasone dose when he starts the shots.
I would think with Nick's symptoms and rapid growth, his doctor would have done at least one adrenal test. If he should turn out to have low cortisol, at least it's something you can easily do something about.

Good luck with the neurologist!

[Heiferly]

It looks like most of the research on JHS is being published in rheumatology medical journals, so I would say the best bet would be a rheumatologist.  (Google scholar comes to the rescue yet again!!)

I think there's a simpler screening that other physicians may be able to do, but probably for a definitive answer, you'd want to see a rheumatologist.  

EDS looks like it's mainly falling to geneticists, then secondarily to vascular medicine and dermatology.  But you should be able to find out about EDS as a sub-section of JHS (I think) ... so maybe if JHS is diagnosed you would be referred onto a geneticist to discuss EDS?

I've spoken with a doctor (not in the States so not really an option so far as looking for diagnosis/treatment) who has some expertise on the connections between JHS and dysautonomia, so if you end up going down this road, let me know and I can find my links to that info online.  It might be helpful reading for you.  (Oy.  I really need to find time to get that linked up on our health pages.  SOOOOO much to do, so little time/energy to do it.)

[LivingInHope]

You're welcome.  

[LA1989]

I am going to expose my ignorance here, but who would test for JHS/EDS? Is that a specialist-only diagnosis? A cardiologist evaluated him for Marfan's (Nick did not appear to be hyper-mobile to him) and concluded he did not have it. But looking at the major and minor criteria (criterion?) for JHS it seems possible, when i think back over the last year.

I will email our primary care doc and ask for an endocrinology referral today....

Heiferly, your description of the trouble you have opening things could very well be Nick's issue. I know he is so much weaker than he used to be. I have taken to just opening things before I give them to him now so he doesn't have to ask.

[evo123]

JHS/EDS as mentioned above would be a good thing to get ruled out, especially as this itself can also be a cause of dysautonomia.  I am now under evaluation for this to as Prof. Mathias has deemed me to be hypermobile and my 3 girls show EDS symptoms to.  

As another thought, what meds is he on?  An aunt of mine is on steroids for her bronchial tubes and over time they have thinned her skin really badly.  She only has to brush past something and the chances are her skin will tear.  I am unsure of the actual meds that can do this as a side effect but if you post a list of his meds I will look into this for you.  

Has your son never been evaluated by an endocrinologist?  If not then maybe try and get him evaluated by one and have him do a full hormone panel.  x

[Heiferly]

Sorry if you've already said this and I missed it, but has JHS/EDS been ruled out?  That would be my first guess off the top of my head.

Stuff like mastocytosis/MCAD or even something less exotic like eczema could be another consideration.  I have eczema, and have problems during flare-ups of the eczema on my hands with the skin "tearing" easily (not sure if I should call it tearing or cracking ... guess it depends on what I'm doing when it happens more than anything ... but it definitely weakens the skin and it will split open and bleed).  My hands tend to be heavily effected because I wash them more frequently than other parts of my body (duh) and soap is one of the things that my skin reacts to.  (If you want to try switching soaps to see if that helps, old fashioned castile soap is the one that seems to work for the worst sufferers of skin allergies/sensitivities.  I like Kirk's.)

http://www.kirksnatural.com/barsoap.html

My third thought might very well go in conjunction with either of the other two.  Oftentimes when I hurt my hands it's because I have more trouble gripping/opening things than I used to before I got sick.  My docs (especially neuros) have occasionally commented on my muscle weakness that has come with my dysautonomia.  It's not so pronounced as to be incapacitating, but I definitely struggle with things I wouldn't have before; sometimes things that once would have been easy for me to open are nearly impossible for me now.  In an attempt to get a better grip and get lids off, I've nearly skinned my hands sometimes!!  So that could be part of it as well?  I've learned to just ask someone else to help me open things, but that may not be so appealing for a young male (really, it's a bit of a blow to my young-ish female ego, too ... ).

[lovemydowncomforter]

i have quite sensitive skin. i can't shave at all without getting razor burn, no matter what razor or shaving cream or whatever i use. no one else in my family gets this at all.

[LA1989]

No, Dr. Rowe is a pediatrician who has a special interest in adolescents with dysautonomia and chronic fatigue syndrome. He's done extensive research and has had several articles and studies published.
I have all my hopes pinned on him that he will know the right things to look for and the right tests to order and the right specialists to refer us to. We are going to see a neurologist he recommended next week since we couldn't get Nick in to see anyone else around here b/c of his age.
But you're right-I'm going to go ahead and request it from our primary. Or at least run it by her. It could save some time in trying to figure out a working solution for this boy.
Thank you. :)

[LivingInHope]

My primary dr. ordered a fasting cortisol blood test for me.  There are reference ranges that should help guide the doctor as to whether something is outside the range or not at least.  Yeah, it might be worth doing it ahead of time and maybe you could get a sooner appointment if it came back outside normal range.  So Dr. Rowe is an endocrinologist then?  

[LA1989]

No, it was a plastic 20-oz soda lid. It has those tiny little ridges in it, but no sharp edges. He's been itchy on and off for a few days now but I don't remember him complaining about that before.
He has seen a dermatologist about the stretch marks. She concurred that they were nothing to worry about and were probably caused by his rapid growth. He grew a HUGE amount in a very short time (something like 10 inches in a year).

He has not had his cortisol level tested. Do you think our primary care would order that? And if so, do you think it's worth having her order it or should we wait until our appointment with Dr. Rowe in Novemeber because he may actually know what he's looking for. And no, his growth hormone level has never been checked.

I should say that his height did not catch us by surprise. When he was very little they did an expected growth projection and estimated he would top out arond 6'1" to 6'3". He is just at 6'3" now.

[LivingInHope]

If it was one of those soda pop bottle lids with the sharp edges- what happened to your son could easily happen to me.  If there's sharp edges, I tend to watch out for those, but often get major friction red and indented from trying to open things.  But the skin breaking open just from running into something- that doesn't sound like me.  Has he seen a dermatologist about this phenomena?

  With the stretch marks and itchiness- has he ever gotten his cortisol level tested?  And with his height- have they ever tested about his growth hormone level with an IGf-1 test?

[LA1989]

Tonya, No, thank you very much for giving me all the information! That's what I love about this forum--I have found out about so many things, gotten advice, and really found direction in trying to find a solution for my boy.
You all are invaluable to me!

Christy, thanks so much for that and the email. That really makes a lot of sense--and I don't know if you remember the debacle of his urine test this summer. The results, although they came back high for histamines (as well as other things) were basically discounted because of the original lab error. Looks like something I'll be checking back into...

[tonyad]

   Phew!  Glad that he has None of this :)
I figured not but just threw it out there.

    Sorry that post was so long.....may be the longest one I ever posted...Lol
it gets to be to much when they are long like that so thanks for bearing w/ me :)

   Have a good rest of the week  and I hope these Sx get better and some answers soon!
~T