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My son is only 10 and his genetic link to sarcoid is strong, now i see many different rashes, welts and so on, on his skin just like his father had before he died of sarcoid just like his great aunt did too but i get the runaround from his doctors anyone know of a good skin doctor in RI or in the new england area?
Arthritis Eczema Early-onset sarcoidosis Lexapro Skin conditions Dermatitis Blisters Rashes Ketoconazole Pain Rheumatoid arthritis Sarcoidosis
If your insurance will allow take your son to a sarcoidosis clinic, the closest one I am aware of is in NYC or try the American Academy of Dermatology, there are 50 entries in R.I. alone. Your son's condition is called Early Onset Sarcoidosis or Blaus Syndrome. You and your family have suffered the worst possible consequences of this disease. Most of us fear the outcome, unfortunately you have seen too many times how fatal this disease is. My sincere sympathies and may you all have a better outcome than previously.
Alan
I have worried about it in my 10 year old son also He also has alot of bad skin conditions rashes weeps small blisters I hve taken him to demotologist and they say is eczema or another skin disorder just diagnosed yesterday cant remember the name but its just a little stronger than eczema. I have sarcoid myself but no family history as far as I know. But u cant help to worry because its genetic we know for sure. I live in the US if u do have him tested will u olease keep me informed?
Hi hopenicole,
My 5 year old suffers from early-onset sarcoidosis and the doctors also thought she only had excema. Have they done a biopsy of your son's rash? That is how my daughter was diagnosed.
Take care
if u have access to the internet u will be able to find local dermatologists in your area and other specialists who deal with sarc. im in the same boat, hoping my son doesnt have it. good luck! And a chest x-ray or cat scan wouldnt be a bad idea cause most of the time sarc starts in the lungs.
On the subject of eczema, my son (almost 7) and I both suffer from it terribly. It has NOTHING to do with sarcoidosis. It is genetic.
My dermatologist told me that there are two times in your life when you get it, 1st, when you're a baby and they call it "cradle cap" (although I think the term "cradle crap" suits it just as well! lol) and 2nd, when you're middle aged. (I did NOT like her saying that when she was diagnosing me at 35!) She called it Seborrhic Dermatitis (which is NOT, NOT, NOT the same thing as dandruff! Dandruff is dry skin. SD is an oily scaly skin.)
I've had lots of suggestions, but the things that work best for adults is Ketoconazole or "Nystatin and Triamcinolone Acetonide Cream"--if you need prescription strength.
The Ketoconazole comes in a shampoo that you use about every other day. It is used on your hair, in your ears, and on your forehead. You leave it on for 5 min and rinse. (Don't get it in your eyes or mouth though!! yuk!) Use it in conjunction with the "K" cream.
You use that on all affected areas 2x a day. Once it's under control, you don't HAVE to use it every day--just when you have a flare up. The "Nystatin and Triamcinolone Acetonide Cream" cream is the same method, it's just that I've used the "K" cream for so long (10 yrs.) I didn't think it was effective any more FOR ME. It works pretty fast.
If you don't need or want a prescription, or you're using it on a baby, start with hydrocortizone cream. It will take the inflammation away and calm it down. If you use other products (lotion, creams, ointments, etc.) on it when it is inflammed it WILL sting and burn!
Once it is back under control, you can use a product called AmLactin. It is technically Ammonium Lactate. It is on the pricey side but it is worth it. (Military can get it for free as a prescription at any MTF pharmacy.) It blocks the moisture from leaving the skin. I got this advice from a dermatologist in Alaska where your skin gets extremely dry and eczema flares up quite often!
Loran : )
Alan you don't know how much i appreciate your information and good wishes for my son and my family we are scared stiff but we don't show it since Aaron is so young we don't want to scare him so we keep calling it severe rheumatoid arthritis but i know how serious this is. I am a mother of 4 and it can be challenging just to find time to get on the computer is minimal i don't get a chance to respond to my discussions as often as i wish. God bless you
Dania
Aaron has a appointment in the Boston children's hospital on November 17, hopefully we will have some answers because his fathers side of the family have a mean gene of sarcoid and it has been fatal we are very concerned and i am also concerned about your son because you need to take care of his and your immune system sarc targets the immune system without any notice and you or your son can catch a virus don't get alarmed, stressed or depressed cause these things can lower the immune system too so take your vitamins and give him his multi vitamins too also make him use purel and wash hands allot, i am organising a charity to bring education and awareness to this disease for children who have it and children who show sign's and are not diagnosed early enough its called For Aaron's sake please keep me informed i live in RI so i am in the US. God bless you.
Dania
Hi Dania,
I can only imagine the dramas that you must go through on a daily basis. Respond only when and if you can, after all, we are all here to help each other, not to be rewarded, only satisfied that we can help in some way!
Alan
My son has not been biopsied whenever i took him to his dermatologist she would say its something simple even when i told her his father died of sarcoid and had the same rashes before he died the doctors never listen to me so we have a appointment at the Boston Childrens hospital November 17.
Aaron had a chest x ray and his lungs are fine its in his bones and his skin sarcoid started in the skin for his father and then it showed up in his joints then it manifested in the lungs last and this is when it got bad and his immune system was compromised so he caught a brain virus that ate the outer layer of his brain and he was on a death bed for 8 months.
Than you for the great imformation:)
I've done a little research for you. Rhode Island hospital has a paediatric dermatolgist, as has Brown Medical School(he is probably in private practice or works at a nearby hospital, but doing research I found you would be better to take your little one to a sarc clinic if you want a firm answer to the sarcoid question. I would recommend NJMC in Denver Co. because they seem the most caring and complete sarc clinic. Treatment is usually low dose mtx or pred so its basically the same treatment if it were arthritis.
Hope this helps
Alan
Wow, I am so sorry for your loss. I have a couple of questions for you.. I hope you don't mind. If so, please feel free not to answer. Here is a little info about me. I am 42 years old, was diagnosed with pulmonary sarc back in December 08. Since then, things have been really rough for me. I am on Pred 10mg, lexapro 20, Mtx 25 mg injections once a week, and now Humira. My sarc has gone from just lung involvment to all my lymph nodes throughout my chest, my spleen, joints, eyes and skin just recently. What type of symptoms did your husband have? What was his history? I have a horrible feeling that things are not going to go well for me. I am not sure why, but I just feel like this is going to take me. I am still working, barely. I work with special needs kids and that is about all I am able to do all day. I am absolutely exhausted when I get home so I just sit on my chair and play on the computer and watch tv. I have 3 children still at home. My youngest is 13 and my oldest is 23. My oldest is in the Navy. I do get chest pain and pressure, especially with exersion. I am on o2 at night, so far. Anyway, I would love to hear more about your husbands battle if you don't mind sharing.
Thank you.
Sarcoidosis is a "multiorgan" disease - meaning it almost always involves more than one organ. It's unpredictable and affects different people in different ways.
You can learn about the ways in which sarcoidosis affects the body in FSR's Sarcoidosis and the Body brochure.
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