"Thanks so much for your feedback. I will see about substituting xeljanz for methotrexate. My daughter has sarcoidosis with uveitis so she’s been on methotrexate for the last few years. The mtx does control her uveitis but hasn’t helped…"
"Hi! Just sent you a friend request. Wondering if I could touch base with you about your daughter’s experience on xeljanz? My daughter has an appointment at the end of August and then again in September and I’m trying to gather info for…"
Hi Lauren, I am from right by toms river, in beachwood. How is everything going? If you ever want to talk or even meet up, I would love that. I have had alopecia for about 16 years and would love to give insight. I know my mom at first had a very hard time seeing me loose my hair. Now she has to look at my bald head all the time lol but i have a great wig which is awesome. please let me know if you ever want to talk!
It stays on great! My daughter is a competitive cheerleader and tumbles alot and she's never worried she says it feels secure. She even swims in pools with it and it stays on great! It does come up around the edges sometime but just a little and we adhere it with the take home adhesive. As far as how long does it look good it varies. My daughter straightens it with a flat iron every day so I think it makes it look drier quicker and she also doesn't wash it quite as frequently as she should because she can't tilt her head back in hot water so she feels its more of a hassel. We are still playing with it. I want her to try a freedom vaccuum wig to compare. I don't love this system but my daughter is 10x more happier and kids are no longer teasing her so it works for me and is worth every penny. She is wearing it in the picks with the blue tank top on my site.
I'll keep you up to date.
No problem, if I can help I will. My daughter is on her 2nd trial for the virtuesse hair replacement and we are awaiting her 1st of 9 hair pieces that is part of our contract. Ashton hated the 1st one I think she just had to get adjusted to it. She loves the 2nd trial and we were able to customize her more permanent one by waht we learned we liked and did not like from her trial one. My only complaint is after a while it does not move like our hair. See it is 100% human hair but it has been processed which makes it a little course. But it was the solution that was right for my daughter right now. Just let me know if I can help.
Thanks for the compliment about my attitude. Trust me, it's not always so positive...I definitely have my days! But I, too, hope your daughter grows up with a positive attitude despite the troubles alopecia can sometimes pose! After I hit accept to your friend request I couldn't find the message you had sent with it. So I don't remember how old you said your daughter was? I want to say you said, 3? Gosh, I'm still trying to figure this site out, haha. If she is that age, I think at this point it's harder for the parents. A 3-year old doesn't quite notice the stares, like you do. For me, I believe 100 percent that alopecia is stress related. If I have a stressful event that occurs, a few days later my head will burn, like it's on fire...I have no idea why...but as soon as I get over whatever it was that I was going through, I'm burn free! lol I know it's weird...so my point is that, the less stress in a persons like, (in my opinion) the better chance of re-growth. So try not to let her see you upset about it. They can sense those things, and it may adversly affect her. Act like things are perfectly normal, and I think that will help. I know that's easier said than done. But I hope that she is coping okay with it so far. My mom told me she cried for days when the Dr. told her I had alopecia when I was little. When it came back in high school, I saw my dad cry for the first time. I think it's especially hard for parents because they feel so helpless, and as parents all they've known to do was protect and fix things for their children when things aren't right..and with alopecia, they can't. So I feel for you! My mom was my ROCK when I went through this in high school...in the beginning I didn't want to leave the house...she said, nope, let's go, we're headed to the mall today! She kept me going! So know that you are doing everything you can by supporting her! And gosh, I write sooo darn long on these posts! I come with the intention of answering a person's question in a few sentences, and then I ramble on, haha! Well, it is nice to mee you! Let me know if you have any questions...give your daughter a hug for me!
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