Posted by Andy on August 16, 2013 at 7:25am in Main
Hi guys.. Im not sure if a discussion w/ this title alrdy exists but im new to this site and id like to speak to everyone of course but most imp mommys that are in the same shoes as me.. My son was diagnoses closed to a year ago w/ vitiligo and i cant say it hasnt been tough, not for him but for me.. As a mom you know that feeling that you wish you can take on any burden or problem away from the person you love most in this world and the next and carry it for yourself.. So my son is four years old, just started kinder this week :) and hes one of the sweetest youll ever meet. Everyday i stress myself lookin up ideas simply because he has minor depigmentation and i feel the sooner i can try things on his small spots the easier itll be to help his skin. I find peace and calm hearing from anybody hear because we understand how this condition messes with your mind. Sorry for such a long post but i hope to hear from some of you guys. Stories ,ideas, recomendations, or just to vent or lend support to eachother:) <3
You need to be a member of Vitiligo Friends to add comments!
Aww nicole i cant even begin to express how happy i get to even talk to atleast one person who can really understand.. Its HARD. Its been hard. Like i said you know what i feel like a fish out of water. The desperation is unreal. When i found out it took a day to really sink in, but now that im seeing my son breakout in numerous amounts of spots its truly heartbreaking because like you said theres kinda nothin we can do but hope we find something to help even atleast a lil bit. I cry everyday. Some days are better than others but what can i say im a wreck. Im angry, im hopeless and emotional at times , but i as well always think how others have you know way worst life situations and im grateful my son is healthy , bright and overall an amazing son. Couldnt ask for more. But the stress is there. The daily hours im online reading this and that. Thats kind of how i came across this website. I said instead of looking for "cures" and help , let me find a support group to really just chill out a little bit. Im distant, like nothing matters anymore but being w/ him and workin my butt off to cook him clean meals n chase him with his vit. Lol. And i talk to his father and he raises me up. He reminds me of whats important and thats not feeling pity for him but to teach him that hes just a good if not better. To install that CONFIDENCE to be himself n love life regatdless of a physical fault. That its ok hes loved by everybody n hes beautiful so whn the day comes that whn he asks about his vitiligo or anyone else he walks tall n let ppl know theyre gonna have to accept him for who he is. So day by day we take it. Its true, drs. Dont know what to do nor really care. Its on us to trial and error and find possible solutions. But i know were not goin out w/ o a fight. Hes getting tested because they say an autoimmune problem is sometimes caused or triggered by other outlets so ill let you kmow how that goes. I think this is great finding people to be able to vent and bring up ideas and discussions. We can learn n help one another definetly. :)
Yes i couldnt agree more.. My sons first spot was around his anus.. I honestly didnt pay to much attention to it until his grandma mentioned it and told me she thought it was a rash scar? I figured a def no since hes never had such a bad rash to where ut can scar.. It got bigger and at his annual physical i remembered to bring it up.. And the same . She saud "oh it vitiligo. Nothin u can do .. And i really dont know much about it" by his next appt that was just recently i knew more than her from informing myself. I told her i wasnt interested in no dermatoligist. I will def let you know how his appt goes nd plz if you dont mind how your sons goes too.. I read somewhere people are so caught up in finding a cure instead of finding the cause.. So mybe you can ask them if any allergy like skin allergy coule be triggering it:/ i hope everything goes well for your lil boy. <3
We definitely are going through the same emotions. It's great that we both found this website. Its so nice to chat with someone that is going through the same thing. Please let me know how your sons appointment goes. My son goes tomorrow to see another dermatologist. I'm nervous and have so many questions to ask. Is there anything that I should ask that you can think of? When my son got diagnosed, the doctor was horrible. I went in for something else and they noticed the spot of Vitiligo on his neck and had asked how long he had that spot. I told him 6 months and that I wasn't sure what it was, he said Vitiligo. I asked what it was. He told me and said there was nothing you could do about it. Handed me a pamphlet and said see you in 3 months. I was in shock that the doctor was so rude and rushed us in and out. So I researched other doctors and am cash paying the visit tomorrow because his insurance won't cover the appointment. I am hoping that it goes better than the first visit!
Hi, you posted on my discussion Vitiligo and diet. I tried to respond back, but it didn't show that it actually posted. Not sure what happened. Anyways my son will turn four the day after Christmas. He was diagnosed with Vitiligo about a month ago. I felt that no one really in my life could understand what I was going threw. So I found this website shortly after for support. I have researched groups and such here in new mexico, but haven't had any luck. I have went through all kinds of emotions. I cry, feel angry, feel hopeless. I can't put the computer down from researching on this. I can't sleep at night. I feel that I'm driving myself crazy! I have always been able as a mother to help my child. If his asthma is acting up, I give him his medicine, if his eczema acts up, I put on his cream. He's allergic to mosquitoes, so I try to prevent him getting bit so, I put on repellent before going outside. With Vitiligo, I can't help him. I feel helpless! I tell myself daily that things could be worse. I need to stay strong for my son and also for my other two children. I also have a 9 year old boy and a 7 year old girl. Anyways its tough! I'm glad that I found this website. I think its great to talk with people who are going threw the same thing. Okay enough about me lol. How was your son diagnosed? Has he had any other issues medically?
Replies
We definitely are going through the same emotions. It's great that we both found this website. Its so nice to chat with someone that is going through the same thing. Please let me know how your sons appointment goes. My son goes tomorrow to see another dermatologist. I'm nervous and have so many questions to ask. Is there anything that I should ask that you can think of? When my son got diagnosed, the doctor was horrible. I went in for something else and they noticed the spot of Vitiligo on his neck and had asked how long he had that spot. I told him 6 months and that I wasn't sure what it was, he said Vitiligo. I asked what it was. He told me and said there was nothing you could do about it. Handed me a pamphlet and said see you in 3 months. I was in shock that the doctor was so rude and rushed us in and out. So I researched other doctors and am cash paying the visit tomorrow because his insurance won't cover the appointment. I am hoping that it goes better than the first visit!
Hi, you posted on my discussion Vitiligo and diet. I tried to respond back, but it didn't show that it actually posted. Not sure what happened. Anyways my son will turn four the day after Christmas. He was diagnosed with Vitiligo about a month ago. I felt that no one really in my life could understand what I was going threw. So I found this website shortly after for support. I have researched groups and such here in new mexico, but haven't had any luck. I have went through all kinds of emotions. I cry, feel angry, feel hopeless. I can't put the computer down from researching on this. I can't sleep at night. I feel that I'm driving myself crazy! I have always been able as a mother to help my child. If his asthma is acting up, I give him his medicine, if his eczema acts up, I put on his cream. He's allergic to mosquitoes, so I try to prevent him getting bit so, I put on repellent before going outside. With Vitiligo, I can't help him. I feel helpless! I tell myself daily that things could be worse. I need to stay strong for my son and also for my other two children. I also have a 9 year old boy and a 7 year old girl. Anyways its tough! I'm glad that I found this website. I think its great to talk with people who are going threw the same thing. Okay enough about me lol. How was your son diagnosed? Has he had any other issues medically?