Question about skin rashes

[Claire]

Adam has always had sensitive skin, but this year is just terrible. I don't think he went a full week without some kind of rash. It almost looks like a measle rash all over his body, arms and legs. It doesn't seem to hitch and he doesn't seem sick at all.
We saw our pediartician last year in Ottawa who sugestedd Aveeno product which we use and a special gel after the bath. I took him back to our regular doctor and he gave us a colestederm cream which is not helping either. I even tried the home remedies like oatmeal in the tub and such.

Now I am trying Johnson baby soap hoping this will work. If anyone encountered this problem amybe they can give us some advice. He has been tested for allergies 2 years ago and we were told he had none.
Thanks.

[trishasmom]

I have found that shea butter has helped Trisha a lot. She also has a severe skin disorder,Hidradenitis Suppurativa that causes boil like lesions. We find that soaking in epsom salts and putting Tea Tree oil in her bath helps. We also use a moisturizer on her for her dry skin (dry skin can cause rashes). We have also noticed that since she has been on her thyroid medicine the rash has all but gone and we are now dealing with the Hidradenitis Suppurativa and have that pretty much under control.

[Emilysmom]

Carol.........THAT is the name of the skin condition that Emily has had for years. She only gets it occasionally, and the lesions go away in a couple of days. Jackie D once posted about this many years ago. Kind of makes me wonder if this is another one of those things that persons with Ds are prone to getting??

Edited to add:
So far, Emily has had them (and it was much worse as she was just about to enter puberty) only in her groin and inner cheeks of her bottom.. Once, she did have to be put on antibiotics. The doc referred to it as "folliculiltis", but to me it looked like a "textbook" case of Hydradenitis suppurativa. She did act like it was painful.......didn't even want me to look at it!

[trishasmom]

emilysmom said:

Carol.........THAT is the name of the skin condition that Emily has had for years. She only gets it occasionally, and the lesions go away in a couple of days. Jackie D once posted about this many years ago. Kind of makes me wonder if this is another one of those things that persons with Ds are prone to getting??

Trisha is in stage 2 and it takes a bit for the lesions to clear up and they leave awful purple scarring that takes months for the purple discolor to fade. She is on an maintenance antibiotic treatment for that as well as several prescription creams. Kids with DS are more prone to sensitive skins. The lesions are very painful at times and they go under the skin in what is called tracting and spread from on lesion to another. It is not contagious but in some cases surgery is needed to clear out the tract so it can heal. It can also become phsycially disabling if it goes into the later stages. Trisha has had this for many years before we finally found out what it was. Sometimes the lesions have to be lanced as they get so hard with secondary infections. I am just so glad that right now it seems to be under control. Trisha gets in mainly in the groin area and under her breasts. So far she hasn't had it under her arms.

[Renee']

Thank you all for the info. I have seen a few of these on Lauren. Now I wonder if she has the same thing.
She also has a purple rash on her thighs. We thought it was because of her heart but apparently it is some skin issue.

[Jessie]

THANK YOU for finally coming up with the name of this!!! LOL

Jason gets this same thing from what I can tell by what everyone else posts . . . I'll check it out on line to see if it's exactly the same thing, but I'm willing to be it is. He only gets it in the private area as well, more commonly in the summertime.




Jessie

[Jessie]

Hey . . . look what I found:

Hidradenitis may be observed as a primary condition without any obvious cause, but it may be observed in association with the following conditions:

Crohn disease
Irritable bowel syndrome
Down syndrome
Certain forms of arthritis
Graves disease or Hashimoto thyroiditis
Sjögren syndrome
Herpes simplex

So, yup, I guess they've already done the research and it is common for people with Ds.


Jessie

[trishasmom]

Here is the a website you can check out for HS which is what Hidradenitis Suppurativa is also called.

www.hs-foundation.org/

[Claire]

I cherked out the dite and I don't think that is what Adam has. His rash is like a heat rash but all over and is not always there.

I am thinking it may be alllergies but he has been tested for allergies 2 years ago and had none. But I know from experience that you can develop allergies at any age, so I have asked to have him tested again.

But this site on HS was usueful as I sent it to a friend of mine whoes child is not DS but I'm sure has it.

[Jackie]

My Emily has had HS for years...hers is bad...but the derm guy says we just have to treat each outbreak when it happens...he usually cultures her for staph but has YET to ever find it...and I am talking 12 yrs plus now. Hers will stay dormant for maybe 8 or 9 months at a time...then she will get a nasty boil...now usually just one at a time instead of many. We treat it with some sort of antibiotic cream and sometimes they will start her on an actual antibiotic which seems to help if they have become infected. Unfortunately she has some bad scarring but its all in rather private areas. Bra and breast area as well as underarms are her worst.

I think this is a major problem for many with DS and because they are unsighly lesions and often in private areas ...it is just NOT talked about.

I have tried and tried for years to bring this to the attention of those who write about physical problems associated with DS...but it never seems to make it into the literature.

There are HS websites that are good...message boards...etc...but nothing that seems to really keep it at bay. It is sort of...whatever works for you ...treatments.

Jackie mom to Emily 26

[trishasmom]

jackie said:

There are HS websites that are good...message boards...etc...but nothing that seems to really keep it at bay. It is sort of...whatever works for you ...treatments.

Jackie mom to Emily 26

For years Trisha had this problem and all the docs said was to put bactroban on it and treat with antibiotics when they got infected. She sees a dermatogolist now and she is on a maintainence of antibiotic, Clindmycin lotion but the biggest change I noticed was when she started taking thyroid medicine. She still gets them but not as many and they heal faster now than before and are not turning that deep dark purple. She also has a cyst right on her tailbone that stays flared most of the time. We also use epsom salt soaks and I always put a few drops of Tea Tree oil in her bath and I use straight Tea Tree oil on severe lesions. We have gone from her having maybe 15 -20 just under her breasts and about 5-10 in her groin area to having 1-2 under her breasts (and they don't stay very long) to some spots on her inside thighs but they don't develop into a lesion and go away without becoming infected. It gets worse when she is on her period. The good news is by being on the antibiotic program hers no longer get infected which is why I believe she isn't getting the purple scarring. The even better new is that hers has not started tracting. I am sure at some point we will have to change her maintenance program but for now it is helping a lot. I take her off the oral antibiotic for a week or two and then back on for a week or two.