And the doctor agrees.

[MommaTrish]

The doctor agreed with us! He looked over Ryan and said he's almost positive that it's vitiligo. He said he doesn't know how the nurse came up with the skin fungus diagnosis because the spots don't look like it at all. They aren't itchy, scaly, or rashy. He also said eyelashes do not just start turning blonde (which he agreed they were definitely white and not blonde) for no reason. The eyelashes plus the white patches and the way the skin around his eyes is losing color all point to what he is positive is going to come back as vitiligo. He's referring us to a dermatologist because she'll have more experience with it, and be able to 100% confirm it, but he said he's never seen a more obvious case - mind you he said he's only had less than a handful of patients with it. They took a few vials of blood to test since iron deficiencies and thyroid problems have been seen in patients with it, but it's not like all of them have them.

He did stress to us things that we had already read when we first looked into it, that there is no actual cure or way to regain the skin color. And that it will continue to spread. But. It won't impact his actual health in any way, it'll just be difficult for him emotionally as he gets older and more noticeable. He said they should be calling me back Monday with his lab results and his appointment information for the dermatologist.

Oh and dude was a champ when they took his blood. He was asking the nurse about everything that she did, and talking and joking with her. When she filled up the first vial she said "Oooookay, and we'll send this one to be tested" so Ryan asked what the second she was filling up was for and she told him that it was their donation to the local vampires to keep them all from attacking us. lol

 

[Libby Pritchett]

So thankful your doctor actually listened to you!

Sounds like he was a real trooper!

 

[DawnMarch]

Good job on pressing for the right answer. I understood that there are some treatments that can slow things down (and the sooner the better) so keep pushing!

 

[tanyiadeskins]

Wow I am so glad you were able to see someone you felt listened to you! I bet that felt good. Now the dermatologist can confirm it and you can move forward. :thumbup:

 

[YepBrook]

First off, I am giving you a big virtual hug because I know the news must be hard to hear... As mothers we never want to hear our children have to deal with any issues that might make their lives harder. But, I know you are strong and will do a great job helping him through the rough spots. Glad the doctor was helpful! I hope the derm can give you some good advice.

 

[MommaTrish]

Good job on pressing for the right answer. I understood that there are some treatments that can slow things down (and the sooner the better) so keep pushing!

Are there? His doctor seemed to think that the only way to slow it was if he also had thyroid issues as well.

 

[YepBrook]

Are there? His doctor seemed to think that the only way to slow it was if he also had thyroid issues as well.

I read that there are UVB light treatments you can get that can repair of slow down loss of pigment. Not sure if it helps areas already affected, but it slows spreading.

 

[LJSDesigns]

While I am sorry he has vitiligo, I am glad you know for sure. I asked my son the other day about the emotional toll having vitiligo has had on him and he told me that it doesn't bother him much, it is just part of him. He said that people will ask him about it and he explains it as best as possible and that is is never been a big deal. As I had said in a previous post he is light skinned, so while it is very apparent, it is not a devastating thing for him. I hope it will not be hard on your little boy.

Oh and don't be surprised if the dermatologist does little more than confirm the diagnosis. because as the doctor said there is little to be done. My son has both the anemia and thyroid issue, so he is on medicine for those, but nothing for the vitiligo itself.

I'm curious about something. I was told that people who have vitiligo have at least one parent that has a thyroid problem. It is true in my son's case, I was in the early stages of thyroid cancer while I was pregnant, but is it true in your case?

 

[LJSDesigns]

I read that there are UVB light treatments you can get that can repair of slow down loss of pigment. Not sure if it helps areas already affected, but it slows spreading.

And I was told that treatments like this could cause bigger issues down the road, including skin cancer. It is something I looked into and decided against for my child, but everyone needs to make the decision they think is best.

 

[mariewilcox]

Glad you got the correct diagnosis

I do some work for a dermatology office and here is a website that they recommend for reading. If you scroll down there are some treatments listed.

 

[ripal]

I had a friend in my school that had it. We all didn't think of it much. Just accepted it as it. I don't remember someone ever making fun or issue about it. I found her on FB after 25-30 years and was surprised how much it had spread on her. But then, she's had it for 40+ years, I'm sure things have advanced much more and there is a cure or at least something to make it go slow.

{{{HUGS}}}

 

[MommaTrish]

I'm curious about something. I was told that people who have vitiligo have at least one parent that has a thyroid problem. It is true in my son's case, I was in the early stages of thyroid cancer while I was pregnant, but is it true in your case?

As far as I know mine and John's are fine (we had blood work done checking mine a few years back) but John mentioned to our doctor that his grandmother had some serious issues with hers, twice leading to her staying in the hospital.

 

[MommaTrish]

Glad you got the correct diagnosis

I do some work for a dermatology office and here is a website that they recommend for reading. If you scroll down there are some treatments listed.

Hmmm... I'll need to see about those. A lot seem, well, risky. I know there's one MMA fighter who mentioned trying out the laser treatments and he said they were the worst pain in his life. I'll ask the dermatologist about the creams, but I'm not sure if John would OK them. Zach and I (Zach even more so) have some serious skin allergies when it comes to stuff like that. Zach's skin turns red and chaps and starts looking burned so we're very careful about things like that we bring into the house.

 

[LJSDesigns]

As far as I know mine and John's are fine (we had blood work done checking mine a few years back) but John mentioned to our doctor that his grandmother had some serious issues with hers, twice leading to her staying in the hospital.

I'm glad you are fine, because I do feel a certain sense of guilt for his. You never want to give your child a disease.

 

[LJSDesigns]

Hmmm... I'll need to see about those. A lot seem, well, risky. I know there's one MMA fighter who mentioned trying out the laser treatments and he said they were the worst pain in his life. I'll ask the dermatologist about the creams, but I'm not sure if John would OK them. Zach and I (Zach even more so) have some serious skin allergies when it comes to stuff like that. Zach's skin turns red and chaps and starts looking burned so we're very careful about things like that we bring into the house.

Yeah, you will want to be very careful. A lot of times if my son has a wound or serious skin irritation, he will lose pigment at the sight of the injury. He is careful about that and being in the sun without protection.

 

[jk703]

I'm glad that you saw the doctor and he confirmed what you thought!

My son has a couple spots on his back, and we asked our doctor a number of years ago, and that was what she mentioned. She listened, inspected the spots, does check (size, shape, etc) them when he visits. She has said there wasn't any treatment, but to keep and eye on them an let her know if they appear on other areas or if they get larger. They haven't done either. I don't ever remember her taking blood, so I might ask again about them just in case!

 

[nun69]

what a trooper!!!!! and I LOVE that the person taking his blood was like that (since that is what I do for a living)....I like kids around his age because as long as you talk to them and joke with them they are less anxious and it ends up being a good experience

 

[carrie1977]

I'm so glad you guys were able to get some answers from your doc!!

 

[DawnMarch]

Yes it was the light treatments I had heard about but obviously you wouldn't want to do that if it was dangerous. In any event it's worth asking about all the options so you can decide for yourselves.

 

[Lizzy257]

Glad to hear you guys got some answers, sounds like your doc was listening to you.

 

[mariewilcox]

Hmmm... I'll need to see about those. A lot seem, well, risky. I know there's one MMA fighter who mentioned trying out the laser treatments and he said they were the worst pain in his life. I'll ask the dermatologist about the creams, but I'm not sure if John would OK them. Zach and I (Zach even more so) have some serious skin allergies when it comes to stuff like that. Zach's skin turns red and chaps and starts looking burned so we're very careful about things like that we bring into the house.

I agree Trish - I would be wary of alternative treatments also, especially since this isn't a life or death disease by any means. I'm thinking that these are the treatments other may have heard about so wanted to link you up

 

[joelsgirl]

Glad you've got a definite diagnosis, and I hope he keeps a good attitude about it.

 

[Keely~B]

Hugs! I'm glad you have a doctor you like and a diagnosis, at least now you can work on managing things.

 

[catgoddess]

So glad you pressed to see the doctor and he was more helpful. I hope your little guy manages the changes well and they're kept to a minimum.
xoxo