UPDATE-Tonsils are coming out-post #36 (was Peeling palms...)

[Merriwind]

Thanks all. We had blood drawn yesterday afternoon. I don't expect results before tomorrow.

The doctor ordered a CBC, diff and platelets. Also ASO titer and ESR. From what I read, that looks for lingering strep, which can cause a lot of bad stuff, overall inflamation levels, and a complete blood chemistry.

The palms are still peeling, but are a little better. She is still very fatigued. She sleeps 10-11 hours a night and is exhausted by the time school is over. (I subbed yesterday and she was tired by lunch, really pooped by the time I had her 6th period.) We've stopped all extra-curriculars and just come home to rest. Last night she was sneezing and coughing a bit. That little pimple is still on her side. (No crusting or inflammation, just a little, hard pimple that won't go away.) It's so weird. She's not sick in a "wow, she's sick, definitely keep her home," way, but she's really not right either.

Not sure what I'm hoping for with the results, but I just want her to feel better--more like herself. I will keep you posted and appreciate the help, advice and support.

 

[ekball]

Awwww....so sorry you are dealing with this. Not much input that I can add, just encouragement for you, mom, to hang in there and keep pushing her doc to help you figure it out! Trust your "something's not right" instinct - I always find it to be spot on with my kiddos. Hang in there!!!

Oh and I'll commiserate with you a little...DD was at the doctor today, 2 weeks after being there with an ear infection. I hate this time of year when it is one virus/illness after another!!!! Sometimes I wish I could just put them in a little bubble and keep them there!!

 

[FSUDisneyGirl]

Just wanted to send good wishes...and hope you figure this all out! Keep us updated on how it works out. Hope your girl feels better soon!

 

[Schmeck]

Have they checked her for shingles? When hubby got shingles, they started as a row of little white pimply looking dots on his side...

 

[dis-happy]

I don't post on medical topics b/c my medical knowledge is extremely limited. That being said, my friend's son had Kawasaki disease a few years ago and one of the symptoms was peeling hands and feet. Apparently he didn't fit the "profile" for it (didn't have all the symptoms I don't think and also it is usually much more common among Asian people--which he is not). Anyway, there are several other symptoms that you did not mention your DD having (high fever, etc.) but I had to bring this up since I thought of my friend's son immediately. He fully recovered and had no lasting problems whatsoever. You can read about it here.

http://www.mayoclinic.com/health/kawasaki-disease/DS00576/DSECTION=1

Hope you get an answer soon!

FWIW, I watched that show "Mystery Diagnosis" last night on Discovery Health channel, and this was the dx that was finally given. All the other blood work done on the child came back negative. They said it was important for it to be diagnosed and treated within 10 days or the heart can be permanently affected. It's a rare disease but the big clue was the peeling skin. Please make sure your doctor rules this out (the patient last night would have died if the mom hadn't found a new doctor, and this was after several trips to the ped, lots of bloodwork, and a trip to the ER without anything getting diagnosed).

 

[Keara'sMom]

Just wanted to let you know that we're thinking of you and wishing your little girl a return to good health really soon. This must be so hard for you. Here's hoping that she just keeps steadily improving!
Take care,
Leslie

 

[bellebud]

just good wishes again, and waiting to hear how everything turns out. our first ped (who has retired and i miss him) always said to me "i always listen to the mom... mom's always know when something's not right". keep us updated!

 

[Rylee]

FWIW, I watched that show "Mystery Diagnosis" last night on Discovery Health channel, and this was the dx that was finally given. All the other blood work done on the child came back negative. They said it was important for it to be diagnosed and treated within 10 days or the heart can be permanently affected. It's a rare disease but the big clue was the peeling skin. Please make sure your doctor rules this out (the patient last night would have died if the mom hadn't found a new doctor, and this was after several trips to the ped, lots of bloodwork, and a trip to the ER without anything getting diagnosed).

My daughter had this and had to be followed by a cardiologist for several years afterwards. This was years ago, so I'm not sure how they currently proceed. At that time, they were inclined to believe that when we sometimes hear of, an otherwise healthy child/teen, dropping from a heart attack, they may of had Kawasaki Disease at one time, but were misdiagnosed... scarlatina (sp) or scarlet fever, etc.

Also, at that time, they were trying to make a connection between Kawasaki Disease and dust mites. My daughter had previously had allergy testing and was highly allergic to dust. They questioned us about (among other things) recently having our carpets shampooed, which "stirs up" the dust mites. I don't know if any of this was ever proven.

 

[Merriwind]

Wow, thanks all. No results today. The ped will call the lab tomorrow if nothing.

I will definitely ask about Kawasaki and shingles. I watch Mystery Diagnosis and I have to say that show scares the pants off of me.

On a positive note, DD was definitely perkier today and the peeling is noticeably reduced. On the flip side, the recent cold-like symptoms continue.

Overall, I think she's better. Hooray!

Thank you all for the advice and good wishes. The DIS is such a nice community.

 

[jackskellingtonsgirl]

When I was in high school we lived in St. Petersburg, FL and my hands and feet would peel. I am trying to think if it was around this time of year, because maybe it is some sort of viral thing that goes around at certain times of year. I did have mono immediately after high school graduation, but I don't think the peeling palms were part of that. I do remember that I seemed to have a progression of symptoms that LOOKED unrelated - peeling, body aches, fatigue. It's been 20 years ago so some of the details are sketchy now. (When did I get so OLD?! )

Good thoughts for your DD - I hope you get some answers soon!

 

[Merriwind]

Ok, so the ped's nurse calls yesterday to tell me that DD's ASO titer is elevated, which indicates a recent or current strep infection. She's on 10days of 500mg Amoxicillin. If her history continues, she'll wind up doing a second course to get rid of the infection.

I can't believe it took blood work to find strep throat, although I'm glad that's what it is. DD has a long history with strep--gets it easily, has a hard time getting rid of it, weird symptoms (like this time). I should have listed to my mom-gene and started antibiotics two weeks ago! I feel so bad that I could have had her feeling better and this infection gone long ago.

We are probably going to visit an ENT. She's almost ten, still getting strep, has a hard time getting rid of strep and this infection that one rapid test and two lab cultures couldn't find. We talked ENT and tonsils with her (old) ped a couple of falls ago when we were battling strep. DD actually asked this morning if she could have her tonsils out.

I want to thank everyone again for their ideas and good wishes!

 

[Terry36]

I am glad you finally have an answer. I hope she feels better soon.

Yes I would definately look into visiting and ENT soon.

 

[Keara'sMom]

Wow! What a relief to have an answer to this mystery! I hope that the medication kicks in quickly and that your dd feels much better soon!

 

[mom to 3 angels]

I work in the medical field, and was recently informed that, with the ASO titers elevated, of course this means that she has/had strep. But untreated strep can cause these kinds of problems in people. The virus ends up in the bloodstream, and can be assumed to be any number of things, unless you look for this specifically. I'm glad to hear she is doing better. Keep up treatment, and don't feel bad!! Her doctor didn't know what it was, you aren't expected to either. I'm glad you persisted, and she's getting the right treatment now.

 

[PrincessKell]

Ok, so the ped's nurse calls yesterday to tell me that DD's ASO titer is elevated, which indicates a recent or current strep infection. She's on 10days of 500mg Amoxicillin. If her history continues, she'll wind up doing a second course to get rid of the infection.

I can't believe it took blood work to find strep throat, although I'm glad that's what it is. DD has a long history with strep--gets it easily, has a hard time getting rid of it, weird symptoms (like this time). I should have listed to my mom-gene and started antibiotics two weeks ago! I feel so bad that I could have had her feeling better and this infection gone long ago.

We are probably going to visit an ENT. She's almost ten, still getting strep, has a hard time getting rid of strep and this infection that one rapid test and two lab cultures couldn't find. We talked ENT and tonsils with her (old) ped a couple of falls ago when we were battling strep. DD actually asked this morning if she could have her tonsils out.

I want to thank everyone again for their ideas and good wishes!

Glad she is doing better. and you finally figured out what it was!! I am the same way as your daughter. Someone a mile away could have strep and i will get it! Its a nasty thing.

Hopefully, after talking to the ENT you will feel better about things, as will she!

 

[Merriwind]

Well, the ENT read DD's history, asked me a few questions--

1. how long has she been getting strep yearly? - this is the 5th year
2. if she's had stomach trouble with the strep? - sometimes, yes, very much two years ago
3. any rashes? not often, but one just a couple of days ago all down the left side of her body
4. is there any improvement with antibiotics? how soon symptoms return after first course of antibiotics? yes, but symptoms return within 3-4 days.

Then he says, I can make a very strong case for removing her tonsils. Her ASO titer was not high enough to make him think acute infection, but more likely that she is constantly infected. He agrees that she is very pale, listless and washed out looking. He thinks that removing the tonsils will improve her overall quality of life and end the yearly battle with strep. She will have the surgery as an outpatient on December 27.

The ENT is also testing for for Epstein Barr and exposure to mono, which he thinks is possible looking at her. (Her ped said she was running this, but somehow it didn't wind up in her blood work.)

DD continues to be very fatigued, but has trooped through school all week--and actually had a fantastic week academically. She is in a magnet school that is academically accelerated, so doing the surgery over break makes a lot of sense. No work to make up while she's recuperating. Plus, she'll be missing a week in March for a family reunion cruise, so I would like to limit other absences.

DD is very excited and hopes that she will "never be sick again." I hope so too. I'm a little nervous, as she's never had any sort of surgery, but I am confident that all will go well and this will be a very positive thing for her.

Thanks to everyone for their help and advice. We are looking forward to no strep next year!

 

[bellebud]

So glad you found out what it is!! That must have been very hard watching your dd, knowing something was not right, but not having any answers.

I had asked around a lot about tonsil removal a couple years back because my dd very often caught bad flu-like illnesses, and has HUGE tonsils (every doc that has ever looked in her throat has said *wow! those are huge tonsils!*). That didn't turn out to be the right route for us, but I had asked tons and tons of parents in the meantime whose kids had them out, and not once did any of them say "we're sorry we got them out"... in fact, every single story i've heard was always "it was the best thing we could have done!"

my friend also just had both her kids tonsils out last winter (kids ages 9 and 11) because they got 2-4 strep infections each winter for a few years. she was soooo nervous of course before the surgery, but was soooo glad they did it. they've both been strep free since. I thought she mentioned that someone told her the kids probably had strep 'living' in the tonsils (so to speak) and it simply became active at times, but removal was the only real 'cure' because of this. Don't know if this could be correct, but i thought it was interesting.

again, so glad for you all you have an answer. hope she's feeling back to her normal self soon!

 

[bumbershoot]

"I had asked tons and tons of parents in the meantime whose kids had them out, and not once did any of them say "we're sorry we got them out"... in fact, every single story i've heard was always "it was the best thing we could have done!""

Then here ya go. I had mine out, and it is one of my BIGGEST regrets.

I used to get a really sore throat, my tonsils were always big, there was no indentation behind my jaw b/c of my tonsils.

And that was the extent of my illnesses.

Now that i had part of my first-stop defense immune system out, I get sick in my LUNGS. It gets FAR scarier than it ever did when my tonsils were catching it and doing what they are meant to do.

I would give anything, absolutely anything, to go back and change that decision that I made all on my own (at 21...turns out my ped was truly trying to save my health, not bug the crud out of me, by refusing to take out my tonsils for all those years), because getting so sick in my lungs I am afraid of falling asleep is FAR FAR worse than ANY pain I ever experienced in my throat (and right before I sought out someone to take them out I had strep four times in one year, and my immune system was diminished by rowing on a lake with red algae blooming, and I had to dig my long fingernails into my palms to ignore the pain caused by taking the pain pills and the antibiotics...I was in pain, and I would do anything to have that mild illness back).

Think hard about taking out a kid's immune system. Think hard about doing things to HELP the immune system. Supplements, herbs, acupuncture, chiropractic, all those things are mean to support the system, to help the body function better, and to try to get the person better able to deal with illness. Think about doing that first, rather than increase the antibiotics and/or yank out a part of the immune system.

 

[mom2grace]

I had my tonsils out in college, the BEST decision ever. They weren't taken out earlier b/c my mom was totally against it. I was constantly sick, and haven't been sick since and I am now 37 (shh!) . I also had mono in the 3rd grade, about this time of year. They thought I had leukemia b/c my bloodwork would not test + for mono.

I am also way into holisitic meds, see a chiropractor 3 x week, vitamins/minerals/herbs, etc. Sometimes parts of our bodies don't work as they should. I think about it this way.......there is debate about if we need our appendix, but once it goes "bad" with infection, it always comes out. The tonsils are very similar. There is constant infection in your DD's tonsils (as diagnosed by your Dr) and they need to come out.

Good luck to you! Keep her well hydrated before and after the surgery!

 

[bellebud]

"I had asked tons and tons of parents in the meantime whose kids had them out, and not once did any of them say "we're sorry we got them out"... in fact, every single story i've heard was always "it was the best thing we could have done!""

Then here ya go. I had mine out, and it is one of my BIGGEST regrets.



of course there are always exceptions to everything, but I still believe the majority of cases benefit from tonsils being out when the doctor recommends it. Docs today don't just pull them out the way they used to (I actually was asking for my dd's to be out, and they wouldn't for her). And I only base this on my own personal health, my sil's health (read below), and all the parents i asked a few years ago (which was about 20 i'd say). Certainly not a *study*, but compelling none the less.

BUT to go along w/ what bumbershoot said, my when my sil was about 19, she had a horrible case of tonsilitis and got her tonsils out. My mil was furious to say the least, because she very much doesn't believe in getting them out. She said she feels adults who have them out get a lot more repiratory illnesses than those who keep them in. BUT again, SIL is now 34 and has hardly been sick since, but who knows. My mil got that info from somewhere, but is it outdated now, or is it the new findings??

I had my tonsils out when i was 5 (i'm 39 now), and i'm hardly ever sick, and when i am sick, it's a cold. I've never ever had a respiratory illness in my life. Maybe that would be the case for me whether i had my tonsils or not, and it just doesn't make a difference, because when they recommend removing the tonsils, they're not working properly anyway to 'catch' the illnesses they're supposed to, and they're causing more bad then good.

One thing i've learned from experience from dealing w/ my dd's illnesses (106 fevers and seizures), using many doctors, neurologists, er's, etc, is to get a second opinion and don't tell the 2nd opinion doctor you're there for a 2nd opinion, because they ususally won't want to go against what another doctor has said, unless it's a hugely blatantly wrong diagnosis. I've even gone for a third opinion when i just didn't feel right about things.

I'm sure you'll do the right thing for your dd. How is she feeling now? Have the antibiotics kicked in a bit? Hope everything's looking up for her!