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Posted: December 14, 2011 - 0 comment(s) [ Comment ] - 0 trackback(s) [ Trackback ]
Category: Alopecia

Anthony's story update:
We went through all the blood testing for thyroid and allergies and anything else that we could think of. End result: he's perfectly healthy, but bald. We saw a pediatric dermatologist at the Children's Hospital and the only treatment we considered was SADBE (a chemical applied to the scalp that would create an allergy in hopes that it would divert the immune system from the hair follicles). We did the test spot and he had no reaction whatsoever. In a follow up appointment we had the option to increase the strength but decided against it. We're actually in a really good place with it right now as far as acceptance. One of the blessings we've seen over this whole thing is that because it happened at 14 months old, it will be his traumatic event in the teen years watching it happen. This is one of the reasons we decided against treatment. Everything would likely result in it falling out again and we just don't want to be waiting for that day and then for him to be old enough at that point to go through it too. We have seen peach fuzz come and go on his head and even an occasional eye lash grow and fall out. We're not hopeless, but we're counting more on God for healing and not seeking treatments at this time. I had asked the derm how I should research and see what new things might be found in the coming years and he just recommended that we follow up once a year to let him give us the updates. We were fortunate to find a doctor we trust to do that. I didn't want to have to weed through all the info on the internet and try to decide what's reliable and what's not. Something interesting that did recently come up at a visit to my doctor though was a pamphlet for Latisse (a Rx for thickening eye lashes). I decided to ask my doc if it would work on someone with Alopecia and she gave an enthusiastic yes! It could even grow eye brows with minor side effects. This is something we will definitely consider when he's old enough to be responsible for application and make that decision for himself. One surprise that no one warned us about was the possible effect on fingernails. At one point he had 4 nails that appeared to be peeling off. I cut the loose pieces to avoid them getting snagged on anything and did apply a keratin strengthener that is put out by Avon. The derm said it didn't make any difference, but whether it did or didn't, it ran its course and his nails are all back to normal and we just keep an eye on them.
Parent to parent:
I'm tired of hearing it myself, but I am fortunate to have a boy with this condition. However, I do feel like I would have the same attitude with a daughter, but I know the challenges as she gets older would be greater. I encourage you to pursue treatments to your level of comfort for what you want for you child while too young to determine for themself. I tried to consider the conversation I would have with him in the future as to the decisions we made and it helped my perspective. He’s a healthy, joyful and funny kid and I don’t want to take any of that from him or myself. At some point, your child has to be able to make his own decision and know he has your support no matter what and he has to know he's perfectly made no matter what he looks like. If you're concerned about teasing, if it's not the hair, it will be something else. My job is to build confidence and self-assurance in WHO he is, not what he looks like. If there comes a day that he's just really struggling with it, I'm prepared to shave my head to show my support. You'll have your ways of helping your child cope too.
Things we've discovered and do:
**In these cold months, beanies are a must, but they're not comfortable unless they are the fleece kind and have no seams in the top...seams and knitted materials tend to irritate his head. Sometimes wearing them to bed is good too, or a hooded sweatshirt.
**A lot of people assume he's going through chemo and are afraid to say anything so when I sense it I just offer up the opportunity to educate them on his condition.
**He loves to use the soft baby hair brushes on his must feel like a massage cause he just loves it!
**At this age he's so prone to the bumps and scrapes and they always end up on his head! As heartbreaking as it is when we have to see every one of them, he's luckily young enough that the scares will likely fade as he gets older.
**We often paint his head for different occasions (baseball games, bowling, holidays), he enjoys it and it's become a fun way to share his story and bring awareness. (I know this isn't for everyone)
**I look for purpose in everything we face. For me right now, it's awareness and encouragement. So many people struggle with self-worth who have this condition and it greatly saddens me. I feel like it's really not focused on by the medical community because everyone would rather find a 'life-saving' cure. If we all continue to 'hide' alopecia it's going to continue to be ignored.

Posted: April 4, 2011 - 0 comment(s) [ Comment ] - 0 trackback(s) [ Trackback ]

I am registered for my son, Anthony, who is 14 months old. He suddenly lost all his scalp hair in a matter of a couple weeks and was diagnosed with Alopcia Totalis.  We are currently waiting on blood work results to insure there are no further issues.  The next step for us is determine a treatment, if any, that would be appropriate for him.  Our dermotologist was not at all helpful.  We are seeing our regular pediatrician this week.  I'm also looking for a pediatric dermatologist in the Phoenix area as well as a homeopathic doctor who may be able to help.  This has been a really emotional couple weeks as we sort through all the information and possibilities and statistics...especially for my husband.  We are at the beginning of this journey it seems.  We do have something greater than medicine, and that is our loving Savior, who I am leaning on for wisdom and peace and hopefully healing.  I am so inspired by the stories I have read and I KNOW THAT ANTHONY IS AND WILL BECOME SOMEONE AMAZING AND IT HAS NOTHING TO DO WITH WHETHER HE HAS HAIR OR NOT!
I am happy to hear your stories of success and failure with treatments as we are exploring these now so please share!
I love you all and think you are amazing too.  I am happy that God has brought me to a place of knowledge and understanding for something I was completely unaware of a couple weeks ago.
Heather - faithful mom or Anthony


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