I'm freaking out just a little... **DOC UPDATE pg 5

[golfgal]

I will definitely let her allergist know this. I told the dermotologist about all her food allergies and how reactionary her skin is, but he didn't act like it was related. But I'm going to call the allergist and let him know. He's supposed to be the best in the state.

So we got one in the family better only for my mom to have a stroke today. So please be praying for her!

Oh, I am sorry about your mom--how bad of a stroke was it?

 

[vettechick99]

Oh, I am sorry about your mom--how bad of a stroke was it?

I don't really know yet, I'm still waiting on details. They didn't see a brain bleed but will do an MRI tonight or tomorrow. Thanks for the prayers everyone!!

 

[mlittig]

So glad about your daughter's news and so sorry about your mom My thoughts and prayers to you and her

 

[clovergirl5]

What great relief about your dd. Im so happy that you have a diagnosis and a good outcome ahead. Hugs....Im so sorry about your mom's stroke. Praying for you and your family.

 

[minkydog]

Ok just got back from our appt. Here are the results:

She does have scleroderma. Booo

But it's the morphea (localized) kind. Yay!

He gave us some steriod cream to put on it and he said it will stop its progression, but he said by the looks of it, it has already stopped growing. Yay!

Her scar is permanent. Booo

He said we should feel fortunate that it wasn't on her face because that's where it typically likes to go. Yay!

However, she may get more down the line so keep an eye on her. Booo

He also said it would NOT turn into the systemic scleroderma that is debilitating. Yay! Yay!


Thanks for all your help. We feel pretty good about our visit. Hopefully this is the only one we have to deal with.

Wow. That sounds like it was a pretty intense visit, but overall a good one. I have a friend who has systemic scleroderma--trust me, it's bad. I guess if you have to have it, it's better to have the kind your daughter has. Hopefully she won't have any more trouble with it and I'm really glad it's not on her face. I mean, you don't really want it anywhere, but there are better places and worse places, I guess. Is the scar something that could later be modified by a plastic surgeon, if you wanted to go that route?

 

[vettechick99]

Wow. That sounds like it was a pretty intense visit, but overall a good one. I have a friend who has systemic scleroderma--trust me, it's bad. I guess if you have to have it, it's better to have the kind your daughter has. Hopefully she won't have any more trouble with it and I'm really glad it's not on her face. I mean, you don't really want it anywhere, but there are better places and worse places, I guess. Is the scar something that could later be modified by a plastic surgeon, if you wanted to go that route?

Systemic would be bad, bad, bad. Wow I'm glad that's not it. He said they are not related at all, so one won't lead to the next.

And yes, a leg is better than a face on all accounts!

He could "fix" the scar. He said he could cut it out and she would have a straight line scar instead of a round dent. If she decides later to do the surgery, we'll support her. But the doctor didn't recommend it now, so we'll just wait and see. I'm hoping that it doesn't grow with her and maybe when she's older it will hardly be noticeable.

 

[pilesoflaundry]

Ok just got back from our appt. Here are the results:

She does have scleroderma. Booo

But it's the morphea (localized) kind. Yay!

He gave us some steriod cream to put on it and he said it will stop its progression, but he said by the looks of it, it has already stopped growing. Yay!

Her scar is permanent. Booo

He said we should feel fortunate that it wasn't on her face because that's where it typically likes to go. Yay!


However, she may get more down the line so keep an eye on her. Booo

He also said it would NOT turn into the systemic scleroderma that is debilitating. Yay! Yay!


Thanks for all your help. We feel pretty good about our visit. Hopefully this is the only one we have to deal with.

Sounds like more good than bad. Praying she doesn't get any more spots.

 

[vettechick99]

golfgal, I had the dermotologist's records sent to DD's allergist and he said he does not think there is a connection between her food allergies and morphea. I googled it, but nothing substantial has come up. Should I pursue this further? And what if there is a connection - then what? I can't control the morphea...?

 

[golfgal]

golfgal, I had the dermotologist's records sent to DD's allergist and he said he does not think there is a connection between her food allergies and morphea. I googled it, but nothing substantial has come up. Should I pursue this further? And what if there is a connection - then what? I can't control the morphea...?

No, it is just often autoimmune diseases come in 3's and it is just something to be aware of over time. I still think a trip to a pediatric endocrinologist would be worthwhile, just to have a baseline exam if other things were to pop up.

 

[JessicaR]

A consultation with a pediatric Rheumatologist with her records, and test results is a very good idea. Rheumatologists and Dermatologists are usually the specialists most familiar with Scleroderma. BUT, Seeing a scleroderma specialist is most important since scleroderma is a rare disease, some physicians will never have come across it in their practice. Its a great thing that you are happy and confident with her Dermatologist now but a second opinion is OK and actually very useful many times.

More specific information on Morphea -

http://www.scleroderma.org/medical/localized_articles/Friedman_2001.shtm

Morphea
By Alan W. Friedman, M.D., University of Texas/Houston, Health Science Center, Dept. of Internal Medicine/Rheumatology (originally published in "Scleroderma Voice," 2001 #3)


Alan W. Friedman, M.D.

Question: What is severe generalized morphea? What action can be taken to prevent generalized morphea from progressing? I have heard something about light treatment. I have also heard that morphea does not turn into systemic sclerosis. Is this true?

Answer: Morphea is a form of "localized" scleroderma, rather than "systemic" scleroderma.

The other major localized form is called "linear scleroderma," which looks almost like someone took a knife and cut a line across the skin.

"Localized" means it is confined to the skin and does not cause collagen deposition in internal organs (intestinal tract, lungs, kidneys, etc.). It can range from a few small spots on the skin to a more generalized problem, but it does not turn into systemic scleroderma (assuming the diagnosis is correct).

I know that some scleroderma experts use methotrexate for the most severe forms (including severe linear scleroderma), and while I have not seen patients treated with light, I can see how it might work. This is something you should discuss with your treating physician. I would try to find a dermatologist who has expertise in scleroderma for an opinion.

Wishing you the best with your sweet baby girl!

 

[Lisa D]

My son (now almost 15) was diagnosed with morphea when he was 7. The first derm we went to basically did nothing for 6 months, then finally sent us to a pediatric derm who was absolutely wonderful. We did end up doing the steriods and metrotrexate route because of how fast it started to spread.

He ended up with a few more spots after that, but nothing major. The original spots are actually beginning to fade quite a bit.

Feel free to pm or e-mail me if you'd like any more info. From what I understand it is extremely rare.

Lisa