As a parent of a child with vitiligo, how do you get over the sadness and anger? Every time I look at my sweet little boy I want to cry. :,(
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As a parent of a child with vitiligo, how do you get over the sadness and anger? Every time I look at my sweet little boy I want to cry. :,(
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My son was diagnosed with vitiligo 2 weeks ago. He is 3 years old. His whole life he was in and out of the hospitals and doctors. He is very allergic to any insects/bugs. Has horrible asthma and eczema. About a year ago got molluscum contagiosum and spread all over due to the eczema. Went to the dermatoloist 2 weeks ago to have them treated and found out he now has Vitiligo. I joined this group due to the fact I'm not dealing with this well. I have cryed my eyes out almost everyday. I tell myself that it could be worse but am still having a hard time. My guess is maybe in time it will get easier. Hang in there!
My daughter had molluscum too! You know what cleared it up?? Allergy meds. She needed allergy meds for seasonal allergies and BOOM... gone. I told her pediatrician and dermatologist about it going away after the allergy meds, and they both told me it was coincidence. I spoke with the asthma/allergy doc about it and she said, "Yep. That can work." And then told my physiologically why allergy meds can treat molluscum. Just an FYI.
Your son sounds like he could have food allergies based on all his little body is doing. It may be worth checking out.
I did too at first! Give yourself some time to grieve and know that it is okay to do so. It IS sad!! Then move on. Embrace who your son is. Teach him to be strong. Practice what to say when someone asks what is on his skin. Give him a few easy responses to utter. My daughter says, "It is vitiligo. It is how I was made." I have also suggested she say things like, "It doesn't hurt me. You can't catch it or get it from me. It is like an inside out mole or clouds on my skin." Tell him it's okay for people to ask! It gives him a chance to be okay in his own skin and explain it. It also teaches one more person tolerance. Let him answer if someone asks. He has to do it himself, without you. If he gets stuck, then jump in to help and model what to say. He will pick up on it from you! Ask him if he wants you to go to school and talk to the class. I have tried to get my daughter to let me do that and she refuses. Your job is to teach him that he is perfect and beautiful and to love who he is. Teach him to be resilient and strong. I know, not always easy things. And don't get stuck on vitiligo. It is a very small piece of our children. Don't let it become who they are!! :) Good luck!
I can totally understand how you all feel after struggling myself with t for 30 years and then seeing a spot appear on my 16 year old daughters face i was so totally depressed as I dis not want her to have the same struggle as me.....however there is light at the end of the tunnel. Through diet, vitamins and light therapy and protopic for my face I have reversed my vitiligo and I am not the first person to have done it. Google Emily's Vitiligo. I juice every day for my daughter, have upped her veg intake and reduced breads, dairy and meat and I have introduced Gingko Bilbao, applied Protopic to her face and encourage her to go in the sun. The earlier you catch it the easier it is to treat and reverse, my daughters has disappeared and I am praying it stays that way! So please dont despair or give up hope, act now nd work from the inside out, research and change habits and lifestyle....it is so worth it. Good luck x
Caroline, your story is truly inspiring, about how your daughter's vitiligo has disappeared. Good luck to you both! Take care, Vanessa
I cried 2 weeks straight when my 8 year old daughter was diagnosed last year ~ starting in the dermatologist's office! It's still hard to accept one year later. We've had ups and downs with depigmentation and then repigmentation only to have some of those areas depigment again! Since it's NOT life threatening, people tell me that it's not like she has cancer. Nevertheless, her BEAUTIFUL skin color has WHITE patches that are disturbing for me to look at! I ONLY WANT her skin to be ONE color! Yes, I'm struggling with her vitiligo too!
Cheryl,
Understand exactly how it feels, it started for my daughter at her 8th month and it has been painful years from then for us which mostly can't be understood by outside world.. Keep your hope high and positive and explore the forums and other medications out there.
Also as Kelly said, there are other diseases out there which are worse and feeling she has a good health consoles me a little...I try to keep my hopes high and pray to GOD that sooner a medication will be there for a permanent cure for our loved ones!!
-Sathish
Hi Cheryl,
I can totally relate. When my daughter was first diagnosed, all I could do was cry and nobody else (parents, friends, etc.) seemed to understand. She was just diagnosed a few weeks ago and I wondered what the future would hold for her as she went back to school. I worried because she loves to swim and has been on swim team for the past few years and I had no idea how this would affect that. When she was diagnosed, things seemed to be spreading very quickly, which only added to the sadness and anger. Thankfully things have slowed down some for her at the moment and I will say that just reading in this forum and getting support from others who have been there and are going through this has been incredibly helpful. Hang in there.
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