Comment by Tallgirl on April 1, 2011 at 8:50pm

Alopecia can fade away (i.e., hair grows in) in the same three months that they say it takes the shots to work. So...why would you want to put a baby through that pain, if alopecia isn't physically harmful? And whose emotional comfort are you seeking? A child that young isn't exactly concerned about the prom. I hated those shots even as a teen, and have been much happier with totalis and NO stress about shots (plus, I save that money, as insurance doesn't cover alopecia treatments in most cases!).

Comment by JeffreySF on April 1, 2011 at 8:54pm

Hi Heather,
Talk with your Pediatrician about this.
I would not reccomend that anyone take steroids as a treatment for alopecia especially a baby.
For starters the drug comprimises the immune system and leaves the host vunerable to infection.
Secondly, with such major hairloss the results if any would only be temporrary.
Steroids have many side effects. None of them good.
My advice would be to wait for alternative treatments which may be in our future.
Remember this disease can shut itself off at anytime.
Best Wishes and Good Luck!
Jeffrey

Comment by JeffreySF on April 3, 2011 at 12:41pm

Jacqueline,
Sorry, have a question. Why exactly is Little Anthony still taking this nasty tasting herb? It's obviously not working.

Comment by Jacqueline on April 3, 2011 at 6:07pm

Hi Jeffrey - just to clarify, Anthony is actually Heather (the original blogger's) baby, my nephew is Tyler. The plan was to try the herb for 12 months to see if it would make a significant difference (as it has for many other people). We will be at the one year mark in a couple more months and if there isn't anything more than the tiny regrowth, he will stop taking it. It was actually Tyler's decision to take and continue with the herb (we left the choice up to him). He has been very sensitive to comments from other children and although he was told from the beginning that the herb may not work, he wanted to try.

Herbs do take a while to work and the doctor did modify the ingredients at the 6 month mark, which is when we noticed the first regrowth. Herbs work for some and not for others ... as we have seen some regrowth with Tyler, I don't feel that the statement "it's obviously not working" is fair. We are not force feeding this nasty herb to child that we all adore - he is willingly taking it - and, at this point in time, he needs to hold on to hope.

Comment by JeffreySF on April 3, 2011 at 9:22pm

Hi Jacqueline,
No offense meant with my comment. Sorry if it was offensive to you.
Sometimes it's difficult to understand exactly what others are saying in an online setting.(Or in the real world for that matter)
I'm a firm believer in hanging on to hope.
Best wishes for the little guy!
Jeffrey

Comment by Jacqueline on April 3, 2011 at 10:26pm

Thanks Jeffrey - your message and wishes are truly appreciated :)

Comment by JeffreySF on April 4, 2011 at 1:38am

Hi Jacqueline,
Now that this is behind us I'm ready to swallow that bitter pill. What's the herb? How do I take it? Do I have to chew it, dissolve it under my tongue or can I swallow it whole?
If Anthony can do it so can I.
Jeffrey

Comment by Heather Ramon on April 4, 2011 at 3:33am

Wow! Thanks everyone for taking time to read and respond to me...I really wasn't expecting this much :)
We have definitely decided against the steroids!! We will be meeting with our regular pediatrician on Tuesday so hopefully they will be more thorough with information and options.
This mention of possible food allergies and change in diet is something new to me that I will have to look into. Thank you for another possible avenue.
I'll keep you updated and look forward to hearing your stories too! I have already spent hours reading them :)

Comment by Karen Smith on April 4, 2011 at 9:07am

Heather, my daughter was first treated with steroids during her first episdoe at 15 years old. It worked and her hair grew back. The 2nd time the steroids did not work and she lost all of her hair. We tried Sulfasalazine this time and her hair started to grow but she had to stop due to a reaction. Her hair growth has slowed since she has been off. I would probably not give an infant steroids for alopecia. This is a frustrating condition but your child will be fine with it. My daughter is a happy well adjusted college freshman with plenty of friends and a sweet boyfriend.

Comment by Jacqueline on April 4, 2011 at 9:44am

Hi Jeffrey. Lol - the herb that we have is called Xiao Feng San. My nephew takes it by dissolving it in chocoloate because he can't swallow pills yet, but you can take it in pill form (which I think would be much better). I have heard of others who take Immunocal as well with some good results, so if you are planning on looking into it, maybe ask about both. Good luck!! :)
Jacqueline

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