Jump to content


Biomarker for Diffuse Scleroderma skin has been discovered!


Photo

My Child


  • Please log in to reply
11 replies to this topic

#1 tjw

tjw

    Newbie

  • Members
  • Pip
  • 3 posts

Posted 22 March 2009 - 05:44 AM

Hello

My 15yr old daughter was diagnosed with scleroderma on February 11th. I will never forget that date, it is 4 days before my husbands birthday and 3 days before my daughter's first-ever valentine's date. She missed it because we were in the hospital.

Let me start from the beginning, in December of 2008 we went to a walk in clinic, because we were unable to get in with her Primary care Doctor,who did not have an appointment for several weeks. Any way we found a rash on her right hip. She complained of it hurting when she lay on her right side and the skin was very dry, and white. The little patch began to get bigger. That’s when we went to the walk in clinic.

The doctor welcomed us, looked at her asked some questions, took some blood, and told us that she had a fungus. He gave us two prescriptions, one a steroid by mouth and one for itching, (were he got itching from I still do not know). He then told us to use a particular brand of dandruff shampoo, (his words were have her get in the shower, put on the shampoo all over, and then wait 3 to 5 minutes until it tingles and wash it off). So we did. After she got her shower and did what the doctor said, she began crying because of the burning and sensation on her skin. The next day the rash had spread to other parts of her body.

So we went to a dermatologist were he took a skin sample, and called us three days later by phone to tell us that Kelcie did have Scleroderma. So we went to a rheumatologist within hours of his call, and he admitted her to the hospital.

With all that said, it has only been a little over a month since she was in the hospital, and we are already beginning to feel the financial burden.

I keep asking myself if I would have waited and went to her primary care doctor, would they have told us to use dandruff shampoo because it was a fungus, or would they have referred us to specialist.

I guess my questions is, has anyone every been told that there rash was a fungus and to treat it in this way?

Please help me,
TJW



#2 Jeannie McClelland

Jeannie McClelland

    Senior Gold Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 1,706 posts
  • Location:in the Rocky Mountains of the USA

Posted 22 March 2009 - 06:52 AM

Dear TJW,

I'm so sorry your daughter has been diagnosed with scleroderma and hope that she is doing better now that she is under a rheumatologist's care. I'm glad you've found our Forum, though, and want to welcome you. We've got a lot of information we can point you to and usually there is a Forum member who has personal experience in the same or similar situation and will chime in with advice.

I've never had the particular experience you describe, but have been mis-diagnosed. Scleroderma is so rare that it's not uncommon to have one of its symptoms attributed to something else. We have a good page About Scleroderma that you might take a look at in order to become more familiar with the disease.

I looked up the product named (we do not post brand names of over the counter products) on the site we use as a reference source for medications and it said: "Selenium sulfide 2.5% strength is used also on the body to treat tinea versicolor (a type of fungus infection of the skin)." Selenium sulfide is the active ingredient in the shampoo and tinea versicolor is a fungus. Bearing in mind that I'm not a doctor or medically trained in anyway, I would think the burning and tingling your daughter experienced in the shower was probably irritation from the shampoo, but not that it caused the rash to spread.

It's so frightening when something like this happens to our children. I know with mine, I'm immediately more upset than I ever am if would have happened to me myself.

Warm hugs and best wishes for you and Kelcie,
Jeannie McClelland
(Retired) ISN Director of Support Services
(Retired) ISN Sclero Forums Manager
(Retired) ISN Blog Manager
(Retired) ISN Assistant News Guide
(Retired) ISN Artist
International Scleroderma Network

#3 jefa

jefa

    Platinum Member

  • Members
  • PipPipPipPipPipPipPipPipPipPip
  • 1,325 posts
  • Location:Scotland

Posted 22 March 2009 - 07:24 AM

Hello, TJW. I am sorry to hear that you and your family have been given this rather sudden jolt, but I am glad that your daughter is getting some appropriate attention now. I am curious about the hospitalization, though. What was the reason given for it and how long was she there?

I have seen several posts of early confusion about the possibility of a fungus on the site, so it does not seem unusual, though I have never heard of this particular treatment. I am not a doctor either, but I do think Jeannie's logic makes sense.

Please keep us posted on what happens. We have several parents of young scleroderma patients on the site and a few forum members who are teenagers themselves. Please let us know if there is any specific help you need in finding your way around the site.
Warm wishes,
Jefa

Carrie Maddoux
(Retired)ISN Sclero Forums Support Specialist
(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

#4 Snowbird

Snowbird

    Platinum Member

  • Members
  • PipPipPipPipPipPipPipPipPipPip
  • 1,008 posts
  • Location:Canada

Posted 22 March 2009 - 10:01 AM

Hi TJW

I just wanted to welcome you and your daughter Kelcie. I've personally never heard of that type of treatment...but I'm not a doctor either. It's very unfortunate that the shampoo incident happened but I tend to agree with Jeannie too in that it likely was the irritation from the shampoo that caused the anguish...you would never have known any different as you went with the guidance the doctor provided you, so try not to feel guilty about it because it really wasn't your fault, who would have known? If I can offer one suggestion it would be not to read everything on the internet....been there, done that, not going back. Ask all your questions here....you will find a lot of very useful and factual information on this site....someone here is always in the know of this disease and able to help.
Sending good wishes your way!

#5 debonair susie

debonair susie

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 1,638 posts
  • Location:(United States)

Posted 22 March 2009 - 10:30 AM

Hi TJW,

I too, am very sorry to read of all that your family has been through.

As Jeannie mentioned, any time we try to work through anything involving our children, it is especially difficult.
I will keep all of you close in thought.

In the meantime, if you HAVEN'T an appointment with a rheumatologist for Kelcie, now would be the time.

I wish you the best as she gets the proper treatment.

Please keep us posted?
Special Hugs,

Susie Kraft
ISN Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)

#6 Margaret

Margaret

    Platinum Member

  • Members
  • PipPipPipPipPipPipPipPipPipPip
  • 1,001 posts
  • Location:Pennsylvania

Posted 22 March 2009 - 12:38 PM

Hi TJW ,

I don't know anything about fungus and Sclero but I did want to say "hello to you and Kelcie'. I am the Mom of a 20 years old son who was diagnosed when he was 18 years old in Nov '06 with sine Scleroderma. He pretty much missed out on his whole senior year due to it. He was put on Plaquenil in June '07 and now has the diagnosis of UCTD. He's doing pretty well. Like the others said, make sure you get Kelcie to a good rheumatologist who knows about Scleroderma.

Take care, Everyone.
Margaret

#7 tjw

tjw

    Newbie

  • Topic Starter
  • Members
  • Pip
  • 3 posts

Posted 22 March 2009 - 03:27 PM

Thank you all for, responding to my message, I have been in agony trying to find someone that could relate to what we were going through.
To answer Jefa's question, when the rheumatologist seen her skin and listened to all the leading events that brought us to her, she immediately put Kelcie in the Hospital she started her on chemo, high dose steroids, vitamins and did a lot of different test while we were there. 3 days, Now that we are home Kelcie has, PT, OT, Message therapy and ultrasound therapy three times a week. (I am beginning to think that 3 is our lucky number) She takes her Chemo shot once a week and is on 3 other prescriptions daily, one being high dose steroids. She will have to go back to the rheumatologist once a month for IV treatments, of chemo and steroids and blood work. And last but not least she has been home bound no school which she hates.

Thank you all again, and please let me know of anything that might help our family especially Kelcie.
TJW

#8 summer

summer

    Gold Member

  • Members
  • PipPipPipPipPipPip
  • 522 posts

Posted 22 March 2009 - 06:18 PM

I was diagnosed with Scleroderma 2 years ago, about 18 months ago, I developed oval shaped marks over my back and buttock area. I went to see my local doctor and she said that is was a fungal infection, and to buy some dandruff shampoo. I was told to wash the areas with this shampoo for some time and it should go. Instead, I had some anti fungal cream at home and rubbed some into the areas twice daily. After
a few weeks the marks left me, now 18 months later, the marks have returned and are oval shaped and tan in colour, they have also spread. They are not itchy at all, so I will have to go back to the cream and see how I go.

If you read my other post, I have mentioned that I also have a purplish rash, which is seperate to this, that I am having investigated.

Regards
Summer

#9 ashu

ashu

    Bronze Member

  • Members
  • PipPip
  • 25 posts

Posted 24 March 2009 - 12:49 AM

Hello TJW,

I can understand how you must be feeling. My daughter who is now 12 years old, she had been diagnosed with scleroderma at age of 7 years. From then on she is been having series of complications one after the other. Just go through the stories of scleroderma patients in this site, it is very helpful. Get a good rheumatologist. You need to observe carefully for the progression of the disease. If you have any queries you can post in the forum.

BEST OF LUCK
M/O ASHU
Dr. Damayanti

#10 sallyann

sallyann

    Newbie

  • Members
  • Pip
  • 3 posts

Posted 24 March 2009 - 04:56 AM

Hi jtw.

Yes that happened to me, too. I had a rash on various parts of my body before I was diagnosed with diffuse scleroderma 20 years ago and I too was treated for a fungal infection for 12 months until my right hand went stiff and hard. I think because it is such a rare illness our local doctors probably have never seen it before and don't recognise it . I hope your daughter is getting the treatment necessary and she has come to terms with her illness. I wish her all the very best.

Regards,
sallyann

#11 razz

razz

    Senior Silver Member

  • Members
  • PipPipPipPipPip
  • 344 posts

Posted 24 March 2009 - 06:51 AM

Dear TJW,

I am so sorry to hear your daughter was diagnosed with scleroderma. I had not heard of treating a rash with dandruff shampoo (although that doesn't mean it's not a method of treatment) but I was perturbed to hear of the resulting effects. I am also not medically trained, but it does sound like it exacerbated the condition. Unfortunately, an appointment for the best diagnosis can take weeks of waiting and when you're in pain or discomfort you just want immediate relief thinking it is something minor. I, like yourself, would probably have gone to a local walk-in clinic too.

Thank goodness Kelcie has now been properly diagnosed and is getting the appropriate care. I can understand how she is missing her friends and school right now. Maybe they can pay her a visit or call her by phone to lift her spirits. I hope Kelcie is feeling better real soon!!

Best wishes,
Razz
Live well, Laugh often, Love much

#12 debonair susie

debonair susie

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 1,638 posts
  • Location:(United States)

Posted 24 March 2009 - 09:46 AM

TJW and Family,

I am keeping all of you in my thoughts at this time.

I'm sure this is very overwhelming for ALl of you, so I hope the outcome begins to show positive results soon, so that you are able to soon relax.

{{Soft Hugs for all of you}}
Special Hugs,

Susie Kraft
ISN Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)