Kids/Rash

[Pam]

Fish, I have asked all the questions I could think of and tried many different things. My daughters rash is now gone. It all started in the beginning of November with the rash and stomach ache..the one constant in all of this. Then the skin on her hands started to peel, in sheets, it was really painful around her finger tips. That stopped just recently and in mid december her feet started to peel..that was/is very painful. The skin is peeling before new skin has grown. She has most of the signs of a virus known as the Coxsackie virus but never got the really high fever associated with that virus.

Her doctor, which is one of the best in MN, talked with several other doctors and they were all baffled with her symptoms...in the end they determined the peeling of the skin was casued by atypical coxsackie.

Now for the stomach aches, I tried taking her off milk but that was really the only dietairy change I tried. It didnt help. Stomach aches are worse after she eats..another constant. Never had a fever through any of this.

Seeing a Gastro specialist now and he has her on prilosec and now Elavil...a drug that used to be used for depression but that doesnt work very well for that and they found it helped more with pain control. It changes the way the brain talks to the gut as the doc told me. Her stomach seems to be maybe a tad bit better.

But my question...what is the Elavil doing?

Is it just controling the pain in which case we still dont know whats causing it or....

is it actually "curing" her stomach aches...if so I still want to know the cause of them

After gaining my weight...and seeing doctor upon doctor I know they like to just throw pills at you to cover up symptoms and dont like to really dig and find the cause so I am going to be on this doctor. I will not allow her to be medicated for any length of time just to control pain if there is no attempt to find the cause.

If you have any thoughts or suggestions please let me know. I didnt want to try any dietary changes again until after she has been on the Elavil for 8 days..that point at which I am to call the doctor...just so we know for sure if its working or not.

I was going to attempt taking her off milk again...but beyond that I dont have a clue what to do.

If you have any suggestions or questions you think should be asked and have the time let me know. I'll be talking to her gastro doc again on Tuesday or Wednesday.

There is nothing worse than one of your kids being sick and not being able to help them.

[fish]

Well, Pam, my drill on this is to search the net to learn as much as I can to prepare for the consults with the Physicians.

What is the diagnosis ?
On what is the diagnosis based ?
Are the symptoms consistent with the diagnosis of any other conditions ?
What is the prognosis ?
What is the treatment plan ?
Who is the recognized expert in this area ?
What is the best available literature on the subject ?

The last question is key. You can read. They should be able to direct you to the sources on which they base their professional opinions.

I assume that you are doing searches on the net and reading as many promising hits as you can. I know that there is a lot of information out there on this subject.

This one was interesting: www.anapsid.org/cnd/diffdx/polio1.html

I got only one hit on “atypical Coxsackie” so I would want to know exactly what the Doc means by that term. Are you dealing with Coxsackie A or B or what ?

Open your word processing program at the same time as you do your search. As you read, make notes. Formulate questions. Take your list of questions when you go to the Doc and check the questions off as you ask them. Write answers down. Take notes so you can review them when you get home. It is almost impossible to remember all that stuff. Go back to the net to confirm information obtained from the Doc.

Ask your child if she has questions she wants the Docs to address.
Ask your child if there is any little niggling thing that she has not mentioned. There may be some information missing that she has that she doesn’t think is important.

Get as many independent opinions as you can.

What a lousy break ! You have my sincere best wishes. So does your little girl.

Take very good care of yourself,

fish

[Pam]

Fish, interesting article, one I need to print off and read a few more times. I am going to bring that one up to her doctor.

The doctors were/are not convinced that she has/had coxsackie virus...though I dont know how on earth you explain her hands and feet peeling. I do know that it can be a sign of strep but she was tested for that. She has had her blood taken and they found nothing. They checked a lot of different markers...all were normal.

Diagnosis...we dont know yet. They are still trying to determine that. She had an unpper GI and was found to have reflux, something we have suspected...unfortunately not the cause of her stomach aches.

The next step is for her to be scoped. I've heard different stories from people as to how bad this test is ranging from not bad at all to awful.

I have done a lot of reading and talked to a lot of people. Her Gastro thinks that in November she got sick, whatever it was, coxsackie or some other virus...and it was enough to set off her stomach aches. He doesnt feel like they are related but a matter of one causing the other...not sure I said that right.

Something similar happened to my son about 3 years ago. He got really sick, was put on some medication and ended up with really bad stomachaches. In the end his turned out to be a lactose problem.

I have lots of questions and very few answers but feel good so far with what they are doing. The did retest her blood and still everything turned out good. She also had an ultrasound of all her organs and everything there checked out good.

So right now its a wait and pray game. I call again on Tuesday.

Thanks for taking time to respond and send me that link fish, I really appreciate it. I'll keep you posted on how she's doing.