Mom Confessions

Reedusstalker wrote: ↑Mon May 28, 2018 7:59 pm I never talked about this much on CM. A few people knew but here goes....

My son has an autoimmune disease. It is not something that will ever kill him. As far as autoimmune diseases go, it's a good one to have but it has been a struggle. He has alopecia. If you don't know what that is, basically, his immune system is in overdrive. It attacks his hair follicles and pushes the hair out.

He was DX when he was 4. He was put on cream that I rubbed into his bald spots and the hair grew back. I would use it off and on through the years but last June, he lost it around his hair line and by August, he had a huge spot on top of his head. The cream wasn't helping so they gave us a new one. It didn't work. We got a RX for a shampoo that I had to order from an online place, didn't help. He then had 3 rounds of 20 injections directing into the bald spots. They were so painful for him but he wanted them.

Everything failed. Everything, all treatments. He started getting bullied, it was terrible. I saw him change from this funny, great boy to an angry, hurt person. Depression hit him hard. In Dec, the hair started coming out in clumps. We would find it on his pillow, he'd pull it out when he ran his hand through his hair. It was just terrible. In January we shaved his head and he started to relax. He accepted that he has a disease that is not curable and that he will live with forever.

Since then, he has started to lose his eyebrows next will be his eye lashes. He is in good spirits and I pray he will stay that way. This will never kill him but it has killed his self esteem.

CotterpinDoozer wrote: ↑Mon May 28, 2018 9:18 pm I'm really sorry he's struggling so much. When you have autoimmune diseases it can be really hard, I speak from experience. It isn't necessarily killing you, but you're still considered sick in a manner of speaking. It's hard because people don't get it, and we all know history has taught us that people will mistreat what they don't understand.

Have you ever watched American Ninja Warrior? There is a competitor, Kevin Bull, who has Alopecia. He's a role model now, do you think it might help to show him that someone who also has the same autoimmune disease as him has achieved something like that?

Left.Right.Left wrote: ↑Tue May 29, 2018 12:15 am

Reedusstalker wrote: ↑Mon May 28, 2018 7:59 pm I never talked about this much on CM. A few people knew but here goes....

My son has an autoimmune disease. It is not something that will ever kill him. As far as autoimmune diseases go, it's a good one to have but it has been a struggle. He has alopecia. If you don't know what that is, basically, his immune system is in overdrive. It attacks his hair follicles and pushes the hair out.

He was DX when he was 4. He was put on cream that I rubbed into his bald spots and the hair grew back. I would use it off and on through the years but last June, he lost it around his hair line and by August, he had a huge spot on top of his head. The cream wasn't helping so they gave us a new one. It didn't work. We got a RX for a shampoo that I had to order from an online place, didn't help. He then had 3 rounds of 20 injections directing into the bald spots. They were so painful for him but he wanted them.

Everything failed. Everything, all treatments. He started getting bullied, it was terrible. I saw him change from this funny, great boy to an angry, hurt person. Depression hit him hard. In Dec, the hair started coming out in clumps. We would find it on his pillow, he'd pull it out when he ran his hand through his hair. It was just terrible. In January we shaved his head and he started to relax. He accepted that he has a disease that is not curable and that he will live with forever.

Since then, he has started to lose his eyebrows next will be his eye lashes. He is in good spirits and I pray he will stay that way. This will never kill him but it has killed his self esteem.

I'm sorry he has to deal with something so challenging....my heart breaks for him. (( I can imagine how heartbreaking it must be as his mother to have seen him so hurt and unhappy. ((

Hugs!

Reedusstalker wrote: ↑Wed May 30, 2018 8:51 am

CotterpinDoozer wrote: ↑Mon May 28, 2018 9:18 pm I'm really sorry he's struggling so much. When you have autoimmune diseases it can be really hard, I speak from experience. It isn't necessarily killing you, but you're still considered sick in a manner of speaking. It's hard because people don't get it, and we all know history has taught us that people will mistreat what they don't understand.

Have you ever watched American Ninja Warrior? There is a competitor, Kevin Bull, who has Alopecia. He's a role model now, do you think it might help to show him that someone who also has the same autoimmune disease as him has achieved something like that?

You know what gets me is other people. At a school event a parent I didn't know came up to me and asked " Are you shane's mom?" I said, " Yeah." She said, " And he is the boy with the incurable disease?" And it just struck me, like what? As an adult, why did you think that was okay to say?

I also have guilt about being worried and concerned over him because it's like, there are so many other seriously sick kids, do I even have the right to be worried? You know? And the looks....when you see him, it is clear he has something going on so why are you staring?? The only hair he has now is patchy at the top, back of his head. Stop staring at him, for shit sakes!

Sorry, I went on a rant

CotterpinDoozer wrote: ↑Wed May 30, 2018 9:01 am

Reedusstalker wrote: ↑Wed May 30, 2018 8:51 am

CotterpinDoozer wrote: ↑Mon May 28, 2018 9:18 pm I'm really sorry he's struggling so much. When you have autoimmune diseases it can be really hard, I speak from experience. It isn't necessarily killing you, but you're still considered sick in a manner of speaking. It's hard because people don't get it, and we all know history has taught us that people will mistreat what they don't understand.

Have you ever watched American Ninja Warrior? There is a competitor, Kevin Bull, who has Alopecia. He's a role model now, do you think it might help to show him that someone who also has the same autoimmune disease as him has achieved something like that?

You know what gets me is other people. At a school event a parent I didn't know came up to me and asked " Are you shane's mom?" I said, " Yeah." She said, " And he is the boy with the incurable disease?" And it just struck me, like what? As an adult, why did you think that was okay to say?

I also have guilt about being worried and concerned over him because it's like, there are so many other seriously sick kids, do I even have the right to be worried? You know? And the looks....when you see him, it is clear he has something going on so why are you staring?? The only hair he has now is patchy at the top, back of his head. Stop staring at him, for shit sakes!

Sorry, I went on a rant

He's your child, you have every right to worry about him, just because others have it worse doesn't diminish his struggles. As for people, some people just have no social grace at all. I had to get involved with an issue at my daughter's school because a substitute kept asking my daughter why I had frequently had bruises and kept asking if someone was hurting me. She's 6, that's not ok to be harping on her about. If you have concerns, you take it to an adult, not my kindergartener.

Reedusstalker wrote: ↑Wed May 30, 2018 9:14 am

CotterpinDoozer wrote: ↑Wed May 30, 2018 9:01 am

Reedusstalker wrote: ↑Wed May 30, 2018 8:51 am

You know what gets me is other people. At a school event a parent I didn't know came up to me and asked " Are you shane's mom?" I said, " Yeah." She said, " And he is the boy with the incurable disease?" And it just struck me, like what? As an adult, why did you think that was okay to say?

I also have guilt about being worried and concerned over him because it's like, there are so many other seriously sick kids, do I even have the right to be worried? You know? And the looks....when you see him, it is clear he has something going on so why are you staring?? The only hair he has now is patchy at the top, back of his head. Stop staring at him, for shit sakes!

Sorry, I went on a rant

He's your child, you have every right to worry about him, just because others have it worse doesn't diminish his struggles. As for people, some people just have no social grace at all. I had to get involved with an issue at my daughter's school because a substitute kept asking my daughter why I had frequently had bruises and kept asking if someone was hurting me. She's 6, that's not ok to be harping on her about. If you have concerns, you take it to an adult, not my kindergartener.

Wow! I can't believe she did that to your kid!