Anyone else with Monilethrix?

My 20 month old daughter was just diagnozed with Monilethrix. Her hair is showing the typical symptoms for this, brittle, breaks off. The back of her head is where the hair is the smallest, its real stubbly. The derm saw the beaded look under the microscope. A team of 8 doctors had never seen anything like it in the Midwest. From what I have researched so far, there does not appear to be much out there in regards to treatment.

If anyone else has Monilethrix, could you please share your experiences with me. Have any Vitamins helped? I would love to speak with others that are affected, escpecially as my daughter grows older.

Thanks,

rwright8

monilethrix

Hi Rwright

I have two young daughters with monilethrix. (6 and 3).
If you wnt to chat get in touch.

stu,

Monilethrix Reply

Hi Rwright8

I have 2 daughters that both have Monilethrix. One aged 5 and the other 3.
Both girls are ace and deal with the monilethrix fine.
We have found that all the docters treat it as a 'wow look at this i've not seen this before' and then just let you get on with it.
We have found that there is no treatment for the condition but every case is differerent and in some cases some hair will grow depending on the severity of the monilethrix.
If you want to chat more drop me a line and we'll talk more.

Speak soon.
Stu.

Hi StuGar

StuGar,

Thanks for the reply. We recently took our daughter to Vera Price who confirmed the Monilethrix diagnosis, and much as you said there is not a lot we can do. Sounds like the condition is extremely rare, as our local Derm has only seen it one other time in 30 years, and Dr. Price who is considered one of the top level experts only sees about one per year.

If you could set your Id up to receive private messages, I would like to exchange email addresses, and possibly find out how your daughters condition might have changed over the past couple of years and am just wandering how severe they have it.

The big notes I took away from Dr. Price is to make sure the kids understand they are normal and not different, and to take a year at a time in terms of evaluating how to approach wigs and hair styles.

Look forward to talking soon.

Rwright8

monilethrix reply

Hello again

Just to let you know that i have set up an account to receive replys.
(i think i've done it right)
Look forward to hearing from you.
Stu

I am 30 years old and have had this condition all my life. I was originally given a more vague diagnosis of alopecia and just recently had it pinpointed to monilethrix. Being female has been particularly difficult in dealing with this condition. I have found over the years that I have grown more hair but have always had the beaded hair around the face and nape of my neck. Those hairs break easily and have a look of being shaved closely. The condition has completely reversed while I am pregnant and I am going to explore bio-identical hormone replacement to determine whether I can mimic the pregnancy hormone levels. I don't know how far I can go with this as my dermatologist had never seen anyone with this either and of course my OB has no ideas.
So far my kids show no signs of the disorder, although I have a one-month old daughter and studies show that it often doesn't present until a child is a couple of months old. I just pray and wait.
I

Thanks

Thank you for your reply. Good luck with your new baby. If you get a chance, please send me a Private Message to exchange actual e-mail addresses, I would like to chat with you further about your experiences throughout life to learn more about handling this with my daughter as she grows up.

Very much appreciated.

rwright8

monilethrix

My 15-year old daughter was diagnosed with monilethrix at age 1 1/2. She has been on Rogaine, Retin-A, cortisone creams, etc... At the present time, she is on the birth control pill to see if the hormones stimulate hair growth. Her scalp is not as inflamed and does not itch nearly as much. My daughter chose to wear a wig through elementary school and when she first entered middle school. However, once in middle school, the kids that knew she wore a wig told the ones that didn't and she was threatened that they would tear her wig off. After that, I withdrew on from school and home schooled her for 6th grade. She decided she wanted to go back to school for the 7th grade without her wig. She has not had a wig on since. She decided she should be able to go places as who she is and if someone has a problem - that's their problem - not hers. She is very wise and strong for her age and I couldn't be more proud of her. People can be very cruel but just be there for your daughter. Would love to chat with you more.

Thanks!

slb005 ,

Can you please send me a Private Message with your e-mail address?

Everyone on this board that has replied to me has been great. I have learned a lot about everyone's experiences and is helping our family get a feel for what everyone has went through.

Thanks,

rwright8

monilethrix

Hi, my name is Kristen and I have a 7yr old who has monilethrix. It runs in my family, mostly with the females. I would love to talk to someone who can relate to my situaition.