This is for parents, like us, of children with pilomatricomas. When I researched my daughter's condition, I couldn't find anything written in laymen's terms which described the diagnosis and surgery on a baby or small child. Please consider this blog as one family's experience--information presented here is not guaranteed to be medically accurate or take the place of a good dermatologist or pediatric plastic surgeon!
Monday, January 30, 2012
Helpful Pilomatricoma Links--help me fill this in!
As I've said below, I suspect there isn't much else out there for parents of children with pilomatricomas that need removal. If you've found useful sources of information please share with our community in the comments section below.
Hi! As hard as it was, thank you for sharing your story. I'm glad your daughter is better! I'm taking my daughter to a dermatologist in a few weeks bc the pediatrician mentioned pilometricoma for my daughter's lump on her arm. I'm obviously praying its nothing but whatever happens, God's in control :) Anways, thanks again and hope all is well.
Hi! My 18 month old daughter was just diagnosed with this. She has a spot exactly in the same place your daughter did. But it is not big at all. The pediatric dermatologist says it needs to be removed. I don't have an appointment yet with a plastic surgeon. I'm just really nervous and scared about it! Tell me it's going to be ok! : )
From my understanding, pilomatricomas do not dissolve or go away on their own. :( Bummer, right!??! Surgery is the only removal option, and leaving them risks major infection and hospitalization, like mine had, from risk of cellulitis. I wouldn't chance it, I would do the removal while it is small and easy and scaring will be minimal. Good luck!
We are from Chicago. My daughter had pilomatricoma 2 years ago on her neck and had it surgically removed. The biopsy confirmed that it was indeed Pilomatricoma. Well...just 2 weeks ago, shd found another one...right on the same spot as last one. We are seeing our surgeon on Tuesday. We were told that recurrence could happen...I just didn't think it would happen to us! We would leave it alone, except that it DOES bother my daughter. It actually is painful...grace
My daughter has this as well on her cheek and we are going through the process of having it removed. They are removing all surrounding skin as well as the parotid gland (if the mass is touching that). They stated this is necessary in order to prevent it from reoccuring. It's going to be pretty impactful on her face... I'm just looking for someone who has gone through something similiar... did they remove the skin around your daughters as well or just the tumor? I'm just devasted b/c I've been told her face will be asymmetrical and I have no idea how much so..
Oh My gosh! That sounds very scary! My daugther's tumor was very small, a little larger than a pea...how big is hers? I would trust your instincts and INSIST on a plastic surgeon to do the work, in tandem with the ENT if they insist....This is her face, and a pediatric plastic surgeon will do a much better job than an ENT. Go Mama Bear on them!!!!!!!!
My daughters is on her cheek by her ear... It's about an inch in length by a little under half an inch wide. I'm not exactly sure I'm just guess, but it's a lot bigger than a pea. It's more oblong shaped. Thank you so much for the blog though... I just feel so lost b/c there isn't much out there. I've asked for Plastics and am waiting to hear back. It hasn't been mentioned until I brought it up which kind of bothers me that he didn't suggest it.
My almost-4-year-old daughter has one right where your daughter's was, and at present it looks like your first "this is how it started" picture. I noticed it on Monday and the ped diagnosed it today, Friday. We have a referral for a pediatric surgeon. Thank you for posting this blog.
Thank you so much for the info you provide here. Since pilomatrixoma is quite rare it was not easy to evaluate our daughter's condition. Your pics really did the trick, thanks again, Saura
Hello, I noticed a small, hard lump on my 6 year old daughter's cheek, close to her ear, about a week ago (not sure how long it has been there). Brought her to the pediatrician today and he said it was pilomatricoma (he didn't know how to pronounce it, so I pronounced it for him!). Anyway, he said to wait and see if it goes away on its own. If it becomes infected, then he will referr me to a dermatologist. All the research I have done has said it will NOT go away on its own and will need to be surgically removed. I was content to wait it out according to docter but now after reading your blog and the above comments, I am having second thoughts. Should I get a second opinion from a different doc? Thanks so much for this blog. Glad to hear your daughter is healing nicely! :)
I would take her to a dermatologist now and not wait it out or get a second opinion. My pediatrician also said "well, you can do something about it now, or wait, whatever you want." and in the meantime of my waiting, it got horribly infected with really no cause and very little warning, warranting a three night hospital stay and IV antibiotics. I would be more proactive if I had it to do over and get it removed by a pediatric plastic surgeon sooner than later. Good luck!
Found this article which made me feel better. And thanks for your info as well... My 4 yr old daughter's cyst started out as more like a pimple over the summer, and my husband was tempted to just pop it. She didn't want to, so we left it alone. It slowly started growing, so we had it checked out by the pediatrician. The dr prescribed an antibiotic, thinking that possibly it could be some infection, but it didn't change. So we then went to a dermatologist, who thought it was pilomatricoma. Long story short, we have an appointment with a plastic surgeon to remove it, and we hope that it's benign. https://www2.luriechildrens.org/ce/online/article.aspx?articleID=108
Hi, I'm not sure if you still check this blog... but I am hoping someone does. My 3 year old has a mass on the side of her face and after an MRI they are leaning towards this being a Pilomatricoma tumor. We've been told that the only way to have this removed is to take out the tumor as well as the skin. Is this what you were told? When they remove my daughters they will take all the surrounding skin leaving her face asymmetrical. Kind of like a face lift of one side of her face. I'm just curious if they took the skin around your daughters as well or just the mass. I've asked to get plastics involved rather than the ENT closing it up but they didn't seem to interested. Any advice is appreciated... your daughters healed up perfectly so happy to see that.
Hello. I have been reading the comments above and I realized most of your children have been Daughters. My 6 year old son just had one removed from his arm. I was wondering if this is more common in females? I hope you're all doing well.
I did read some where that it is more common in girls than boys. But still plenty of cases in boys. My daughter's is on her neck. I'm sure her surgery will go fine, thanks to all the stories in hearing about pilomatricoma. I am wondering how much the surgery will cost. There's only one pediatric plastic surgeon in my area, who is out of my insurance network.
What is an ENT? Im a little upset reading this because my daughters pilomatricamo use to be the size of a pea, but the doctor was unsure if it was a pilomatricoma or hemangioma. So he wanted to wait to see if it grew in size because if it grew then it would be a hemangioma. SO now its the size of a silver dollar and i went to get a second opinion from Children's Hospital who said it was a pilomatricoma that needs to be removed. SO i wish i had it removed when it was the size of a pea, but we waited because of my orignal doctors advise :(. SO now we are being referred to a Nose Ear Mouth Specialist to have it removed but now im thinking i should have her referred to a plastic surgeon instead? I need advice please!
Appreciating all of the stories shared. My 9 yo daughter is scheduled to have surgery Monday on what they think is a pilomatricoma on the top of her right shoulder (where the back pack strap hits). Feeling lucky it isn't on her face. A pediatric plastic surgeon will be doing the surgery. She had complained about "her spot" for a while, as pain/tenderness was what we first noticed. I mentioned it to the pediatrician, who said to go see a dermatologist to have it removed. I thought it would be an office procedure. Whoops! I had no idea she would need surgery. I am hoping the recovery is relatively easy. She had a rough go after her tonsillectomy & ended up back in the ER and a second surgery. Hoping this is easier!
Hi! I stumpled across this page in search for answers! My son was had pilomatricamo on the top of his back, which we got it removed surgeically in May 2017, He is 3 years old, well it has came back and it does not even look like it was ever removed! It is much larger now. We went back to the peditriacn surgeon and they want to have him do surgery again! I thought that once it was removed it would not come back! Has anyone else had this problem? I don't know what to do bc our son will be 4 in November and I don't want him to have to be put asleep again and go through all of this once again!
here are some websites that I found useful general information:
ReplyDeletehttp://www.lpch.org/DiseaseHealthInfo/HealthLibrary/ent/plmtrixma.html
http://emedicine.medscape.com/article/1058965-overview
Hi! As hard as it was, thank you for sharing your story. I'm glad your daughter is better! I'm taking my daughter to a dermatologist in a few weeks bc the pediatrician mentioned pilometricoma for my daughter's lump on her arm. I'm obviously praying its nothing but whatever happens, God's in control :) Anways, thanks again and hope all is well.
ReplyDeleteThanks so much Kathie! And good luck to you in your searches!
ReplyDeleteHi! My 18 month old daughter was just diagnosed with this. She has a spot exactly in the same place your daughter did. But it is not big at all. The pediatric dermatologist says it needs to be removed. I don't have an appointment yet with a plastic surgeon. I'm just really nervous and scared about it! Tell me it's going to be ok! : )
ReplyDeleteFrom my understanding, pilomatricomas do not dissolve or go away on their own. :( Bummer, right!??! Surgery is the only removal option, and leaving them risks major infection and hospitalization, like mine had, from risk of cellulitis. I wouldn't chance it, I would do the removal while it is small and easy and scaring will be minimal. Good luck!
ReplyDeleteWe are from Chicago. My daughter had pilomatricoma 2 years ago on her neck and had it surgically removed. The biopsy confirmed that it was indeed Pilomatricoma. Well...just 2 weeks ago, shd found another one...right on the same spot as last one. We are seeing our surgeon on Tuesday. We were told that recurrence could happen...I just didn't think it would happen to us! We would leave it alone, except that it DOES bother my daughter. It actually is painful...grace
ReplyDeletemy daughter's pilomatricoma just came back after 1.5years after the surgery, I am so crashed, hers is on her cheek :(
DeleteHi Kathie,
DeleteMy daughter has this as well on her cheek and we are going through the process of having it removed. They are removing all surrounding skin as well as the parotid gland (if the mass is touching that). They stated this is necessary in order to prevent it from reoccuring. It's going to be pretty impactful on her face... I'm just looking for someone who has gone through something similiar... did they remove the skin around your daughters as well or just the tumor? I'm just devasted b/c I've been told her face will be asymmetrical and I have no idea how much so..
Oh My gosh! That sounds very scary! My daugther's tumor was very small, a little larger than a pea...how big is hers? I would trust your instincts and INSIST on a plastic surgeon to do the work, in tandem with the ENT if they insist....This is her face, and a pediatric plastic surgeon will do a much better job than an ENT. Go Mama Bear on them!!!!!!!!
DeleteMy daughters is on her cheek by her ear... It's about an inch in length by a little under half an inch wide. I'm not exactly sure I'm just guess, but it's a lot bigger than a pea. It's more oblong shaped.
DeleteThank you so much for the blog though... I just feel so lost b/c there isn't much out there. I've asked for Plastics and am waiting to hear back. It hasn't been mentioned until I brought it up which kind of bothers me that he didn't suggest it.
My almost-4-year-old daughter has one right where your daughter's was, and at present it looks like your first "this is how it started" picture. I noticed it on Monday and the ped diagnosed it today, Friday. We have a referral for a pediatric surgeon. Thank you for posting this blog.
ReplyDeleteThank you so much for the info you provide here. Since pilomatrixoma is quite rare it was not easy to evaluate our daughter's condition. Your pics really did the trick, thanks again, Saura
ReplyDeleteHello,
ReplyDeleteI noticed a small, hard lump on my 6 year old daughter's cheek, close to her ear, about a week ago (not sure how long it has been there). Brought her to the pediatrician today and he said it was pilomatricoma (he didn't know how to pronounce it, so I pronounced it for him!). Anyway, he said to wait and see if it goes away on its own. If it becomes infected, then he will referr me to a dermatologist. All the research I have done has said it will NOT go away on its own and will need to be surgically removed. I was content to wait it out according to docter but now after reading your blog and the above comments, I am having second thoughts. Should I get a second opinion from a different doc? Thanks so much for this blog. Glad to hear your daughter is healing nicely! :)
I would take her to a dermatologist now and not wait it out or get a second opinion. My pediatrician also said "well, you can do something about it now, or wait, whatever you want." and in the meantime of my waiting, it got horribly infected with really no cause and very little warning, warranting a three night hospital stay and IV antibiotics. I would be more proactive if I had it to do over and get it removed by a pediatric plastic surgeon sooner than later. Good luck!
DeleteFound this article which made me feel better. And thanks for your info as well... My 4 yr old daughter's cyst started out as more like a pimple over the summer, and my husband was tempted to just pop it. She didn't want to, so we left it alone. It slowly started growing, so we had it checked out by the pediatrician. The dr prescribed an antibiotic, thinking that possibly it could be some infection, but it didn't change. So we then went to a dermatologist, who thought it was pilomatricoma. Long story short, we have an appointment with a plastic surgeon to remove it, and we hope that it's benign.
ReplyDeletehttps://www2.luriechildrens.org/ce/online/article.aspx?articleID=108
Hi, I'm not sure if you still check this blog... but I am hoping someone does. My 3 year old has a mass on the side of her face and after an MRI they are leaning towards this being a Pilomatricoma tumor. We've been told that the only way to have this removed is to take out the tumor as well as the skin. Is this what you were told? When they remove my daughters they will take all the surrounding skin leaving her face asymmetrical. Kind of like a face lift of one side of her face. I'm just curious if they took the skin around your daughters as well or just the mass. I've asked to get plastics involved rather than the ENT closing it up but they didn't seem to interested. Any advice is appreciated... your daughters healed up perfectly so happy to see that.
ReplyDeleteHello. I have been reading the comments above and I realized most of your children have been Daughters. My 6 year old son just had one removed from his arm. I was wondering if this is more common in females? I hope you're all doing well.
ReplyDeleteI did read some where that it is more common in girls than boys. But still plenty of cases in boys. My daughter's is on her neck. I'm sure her surgery will go fine, thanks to all the stories in hearing about pilomatricoma. I am wondering how much the surgery will cost. There's only one pediatric plastic surgeon in my area, who is out of my insurance network.
ReplyDeleteWhat is an ENT? Im a little upset reading this because my daughters pilomatricamo use to be the size of a pea, but the doctor was unsure if it was a pilomatricoma or hemangioma. So he wanted to wait to see if it grew in size because if it grew then it would be a hemangioma. SO now its the size of a silver dollar and i went to get a second opinion from Children's Hospital who said it was a pilomatricoma that needs to be removed. SO i wish i had it removed when it was the size of a pea, but we waited because of my orignal doctors advise :(. SO now we are being referred to a Nose Ear Mouth Specialist to have it removed but now im thinking i should have her referred to a plastic surgeon instead? I need advice please!
ReplyDeleteAppreciating all of the stories shared. My 9 yo daughter is scheduled to have surgery Monday on what they think is a pilomatricoma on the top of her right shoulder (where the back pack strap hits). Feeling lucky it isn't on her face. A pediatric plastic surgeon will be doing the surgery. She had complained about "her spot" for a while, as pain/tenderness was what we first noticed. I mentioned it to the pediatrician, who said to go see a dermatologist to have it removed. I thought it would be an office procedure. Whoops! I had no idea she would need surgery. I am hoping the recovery is relatively easy. She had a rough go after her tonsillectomy & ended up back in the ER and a second surgery. Hoping this is easier!
ReplyDeleteHi! I stumpled across this page in search for answers! My son was had pilomatricamo on the top of his back, which we got it removed surgeically in May 2017, He is 3 years old, well it has came back and it does not even look like it was ever removed! It is much larger now. We went back to the peditriacn surgeon and they want to have him do surgery again! I thought that once it was removed it would not come back! Has anyone else had this problem? I don't know what to do bc our son will be 4 in November and I don't want him to have to be put asleep again and go through all of this once again!
ReplyDelete