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Permalink Reply by jackie estrada on May 29, 2010 at 12:09am

Hi Thea I liked those photos! Crazy people! I saw Mikeys giraffe one day while he napping. I was up on the couch and he was on the floor but his little head was at the perfect ankle that I saw his Giraffe! It made my day because as he was lying there I was crying because I saw all the hair he had gone except for a line or two and the giraffe! He still insist that I put it there but of course I didnt it was just his patch there. Everyone loves it and laughs! Im accepting this but the giraffe made it a whole better. I wonder what other shapes appear naturally? Maybe i should post Mikeys pic and start a discussion on what shapes we see in our babies little heads. :) It would be fun.

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Permalink Reply by Jennifer Flood on May 28, 2010 at 10:53am

Hi I am Jen and my daughter Hailey has had it sinse 08' and with being a 6th grade girl very hard. It did grow back not the underneath. last time we didn't try anything cuz when we did realize what it was,0
Alot was gone! But this time in Jan started and she wanted to do everything now in 7th grade(very hard) so we have done shots they worked to stop the spot of course bno tnew areas. we did oral steroid(not sure if worked but for only 5 weeks) But eh side did start to regrow that didn't last time? It is very strange!And confusing and sad and maddening.We do use the topical steriod and it has worked a little. She does put ice on the spots that itch or hurt.I saw listen to your child and your heart. My daughter is 12 and being a girl is so hard at this age. but I do what she wants and never force! hope that helped. All the people that are effected by this i pray everyday for strenght from whoever your high po9wers and don't loose hope that one maybe a cure!!

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Permalink Reply by Jen Deletto on July 8, 2010 at 12:07am

My daughter was perscribed several different levels of this medication (percentages changed) since December 2009 when she was diagnosed. In April we took her off of the medication. We used it for 5 days and then didn't apply it on the weekends. Over the weekends her head would start to scab up from the irritation. One Monday in April, we picked her up from school and she had scratched her head at nap time because it itched. She scratched almost every scab off of her head. I can deal with a little girl with no hair but I am not about to sit by and watch her be a little girl with no hair and scars on her head from scratching scabs off. Every body reacts differently though and there are different dosages too. Our team of drs saw my Kayla again in June and wanted to try a different frequency with the meds hoping that it would not irritate as badly but within days of that appointment, we started to see some regrowth. We are now in a holding pattern. I don't want to change anything that we currently have going for fear it might stimulate the hair to start falling out again (meds, diet, shampoos, etc).
I wish you the best of luck and remember that every body reacts differently to medications.

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