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MARIA....MOM OF SAVANNA
MARIA (mom of Savanna)'s Groups
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Alopecia in VA
(4 members)
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Parents of Children with Hairloss
(77 members)
Profile
- Relationship Status:
- Married
- About Me:
- My name is Maria i have been married for almost 7yrs, I have 3 wonderful children two handsome boys and a beautiful daughter..My daughter name is Savanna and she is 6yrs old she has been living with alopecia since she was 3yrs old...This doesnt stop her at all, she is a very happy and active child. Savanna takes dance class with Jenkins School of Dance, Has played t-ball, and playing softball this year, she has done cheerleading for her brothers football team (Go Titans), She likes to ride 4-wheelers, and go swimming....but most of all she loves to sing and dance and play with her friends...
- Are you 18 or older?
- Yes
- Website:
- http://www.myspace.com/bewareofkids
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Comment Wall (45 comments)
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How is the regrowth going? Samantha's hair is growing in. steadily and still no brows or lashes. We still have a long way to go. I hope Savanna's regrowth is staying and growing.
By the way, love the new pictures..
take care, Cindy
First, did you get my address so the girls can write?
We had a nice trip in Florida and since coming home Sam has a ton more regrowth, but a long way to go. She is slowly filling with white hairs. We try to go to the beach on the weekends and she swims at her coaches pool one day a week outside with no covering. We went to the doctor this week and they were happy to see the hair and said we can bump treatment to 2 a week now. I hope she does not get that awful rash from twice a week. When Sam is at the beach for prolonged sunlight I do a hat or swim cap on and off and I have 70+ sunscreen (Coppertone). I hope Savanna's head is feeling better. She must be so sensitive to the sun.
Samantha's new hair is in from the club, but we are not getting it till Aug 12th. We are going away to the beach this week and then she has sports camp. I just assume wait till all of her activities are done. But, it did take a lot longer then they said. I called a few times to find out where it was and then my last call this week was good news. We are going to use the tape because we need to be able to take it off for treatment. Sam is so excited to have her new hair for school. I don't anticipate any dislike issues. I saw the pic with the new wig on your page and it was so cute on Savanna. Honestly, I think you should invest in a headband with hair. Samantha has been wearing them all summer. www.hatswithhair.com. They are pricey, but if she finds she likes it, get a few in different band colors. We have 4 and I recommend only human hair. We have a synthetic ones and I don't like it. The one my page is synthetic and I don't like the hair, but I got a new one in human which she wears, but not for playing. She just wore it when she was in a play for theater camp, no one knew.
I can't believe the summer is half over..We start school Aug 27th. How about you? Sam is so excited to be a first grader and we keep up with her learning over the summer so she is good to go..I did have to remind her that 1st grade is all work and little play and she said I know mommy all we do is study.
We are having a Hannah M PJ party tonight with a few girls..I need to go get the house ready..
ttyl
Cindy
If Savanna is ultra senstiive then Sam's treatment maybe too harsh for her. She is doing squaric acid, SADBE..Her body has to produce a rash each time I apply it in the area . If it doesn't her body is not responding. Samantha has had no issues with that. She really tolerates a lot. She gets an itchy scalp and all. Now, that is feeling hair she is even more excited, but we don't know how long it will take or what will happen. This treatment is safe for along term use. Like everything else there is no guarantee that her hair will stay when we stop if and when she has acceptable growth. Her doctor says that she has seen patients keep there hair so we will have to see how it goes...
Check out www.hatswithhair.com and www.hiphats.com. These are the sites i got those headbands from...I will post as soon as we get our new hair..Cindy
Sam got a wig from Children with hair loss and likes to wear it in the house for play. I decided not to move forward with them at this time and get it trimmed. Now that school is out she is not wearing her wig too often since it is hot. She wears the headbands with hair sewn into them, like the pic of her in the black head band. I just ordered one more for the summer It maybe something to consider for Savanna. I am hoping this new wig is going to be like it is described, not hot and meant to wear endlessly like your own hair. My friends husband has been wearing their hair for years.
A few weeks ago Sam broke out in a full body rash which I thought could have been something from the zoo since it was the next day. I finally called the derm and took her in. She felt that Sam was reacting to the meds and that that her body has been upset. (however, I saw a posion ivy warning yesterday, so I am wondering now) She said she has seen regrowth after such a reaction. Low and behold about 2 weeks later Samantha's hair is sprouting in several areas and starting to turn color. We will have to see what happens. The hair is very noticeable when light shines on her head and it could be just the beginning. Needless to say I am very excited. Her hair seems to be coming in in order that it fell out oddly...We started the treatment up again after 3 weeks with a lower so. So far so good...I am spreading the applications out over more days to ensure no problems.
As far as Savanna's desire to do treatment. It is a personal decision that she has to make since she has to bare the reactions. We should be happy that our kids are healthy and can accept who they are without hair. I think Savanna may have reached a comfort zone and self acceptance. And that is awesome..Think how much stronger she is then the average kid her age. I know Sam would be fine to walk around bald if I let her, but I won't..Have you tried talking to Savanna about going to see a Derm to discuss some options.
I am giving Samantha a vitamin with Biotin and I just found a liquid form of biotin and I give her aloe vera juice daily.. There are some moms doing some natural things you may want to try..
I wish you a wonderful summer and luck that things will turn out. Would Savanna be interested in being a pen pal with Samantha. I think they are the same age...Samantha has enjoyed corresponding with another peer with AA.
Sorry for my novel..
Hang in there!!!
Cindy
We started on two weekly applications this week. We did the second one tonight and I felt bad that Sam was so itchy, but she wants to deal with it to get her hair back..I thought a few weeks ago she had some straggles of hair, but now they are gone which has me bumming, but I have to have faith that this will work..
Cindy
HAPPY MOTHERS DAY !
Maria
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