Maria, how is it going? I am having Maria withdrawal. Where have you been? I took Sam back to my friend in CT and she had a great experience, but no crying this time. I decided to start up again on Sat. Today she has a mild rash just on her legs, but I am not going to stop. She appears to showing signs of regrowth and I am afraid to stop now. I will see how she is by the weekend. Today, I saw a small area of colored hair and she has lots of white hairs coming in now in small groups and some colored strands.I am hoping this could be the beginning..I hope we can chat soon.Please let me know how Mia is doing and your mom.
Cindy
Hi Maria
thanks for your comments....and I am thrilled to see a fellow Brooklynite on the site.Where are you from? I live upstate NY now, but grew up in Windsor Terrace and most of my family is still in Bklyn....small world huh? Your family is beautiful, and Mia is absolutely adorable. Look forward to chatting more.........
Eileen
Your kids are beautiful, must be a blast celebrating halloween in America. My husband has travelled all over the U.S. but has not been to N.Y. yet. We hope to go to the U.S. maybe next year, to travel around. Anyway, my daughter Jennifer is now 8 and she has had Alopecia since she was 2. She wears a Freedom wig with real hair its fantastic. How is your daughter feeling about having Alopecia. Jennifer is now used to it, but we have had some bad times. We are using DCP treatment on her head every week. Over Christmas she had a lot of hair growing, but a couple of months ago it all fell out. So we keep going with the DCP and hope for the best.
Maria, is everything okay? It is not like you to post during the week..
Anyway, Sam broke out in another rash 2 days after her Tue application. I called the derm and they saw her yesterday. The doctor said she had good news and bad news for me when she came in. Sam saw the resident first. She said the bad news is she has a rash. The good news is that this good be a good thing. That she believes it is the result of meds. She said her body has been upset and is reacting and that she has seen patients begin regrowth after such a rash. Sam practically has a full body rash. So, now we need to clear up the rash, give her immune system a chance to settle down and in about 2 weeks we will do another application at a lower dose. We cut the dosage in half. If she gets a rash after the next application we will have to stop the treatment. And then you will see me go BATTY.. Cross your fingers that it does not happen..It was good thing I brought her in, and not to her pediatrician. Have a good weekend!!!! GNO today to see thee movie...Cindy
Maria, sorry to hear you are going through a rough patch with Mia..I want to get Sam in an energetic mood and send her a video message. It may help.If it is any constellation, Samantha has complained about about itchy eyes too and rubs..Now that her lashes are gone, not so much anymore...Let me know when you want to chat..Pick a night....Cindy
Maria, the rash is better..The only thing I am wondering is if she picked up something at the class trip to the zoo on Fri, but I really don't think that is the case. Just let me know when you want to chat and I am there...Enjoy the nice weather..I am in the mist of planning my trip to NY to see my friend in Bayshore..Hopefully, we can meet up when I come down this summer..Cindy
Oh Maria, Samantha had treatment 2 for the week and she woke up with a rash all over her body..She soaked in the tub for about 20 min or so today and I creamed her up..I am getting nervous that this is not going to work. I have a prescrip so I put it on all over her body and will give her another bath tonight to soak her skin. Her head did not have the rash that her body had. I don't want to page the doctor on a Sat since I know what is going to tell me. I think I am going to call her on Tues. Enjoy the long weekend..Cindy
Wow, Mia is a doll!
My new book, "If Your Hair Falls Out, Keep Dancing," has a lot of information in it devoted to girls with alopeica. It's a great read and I think you and Mia might find it fun and valuable. For more info, got to my page; there's a link so you can order it, or cut and paste this to go to the web site: www.leslieannbutler.npauthors.com.
Good luck!
LeslieAnn
Maria, you left me hanging..What is the problem now? You can always email me privately...I am off to get Samantha..I treated myself to a facial and shopping spree today..I feel relaxed..Cindy
Maria, Are you feeling better? I am a little nervous today..Samantha is having a play date after school and at another child's house and I have not let her over anyone else's house since her hair loss without me..Keep in mind I have not announced her AA to the class. I hope the mom does not ask me any questions or Sam opens up her big mouth..She has had no play dates from school that were not at my house all year. Cindy
Hi Maria, Carly had had AA for 1 1/2 years and It tool almost 1 year to lose almost all her hair on her head, She does shave down what she has ket and wears a poly cap wig she tapes on. We did try steroid Inj for a while until there was too much loss... It did give her some growth but it eventually fell out. I think her loss has stopped right now. I do give her a DHA Fish oil supplement (500 mg chewable fruit flavor) a day ,I have heard Omega 3's CAN help with autoimmune problems,,, who knows? She does have some regrowth right now we are hoping it continues.
Hi Maria,
Did you go to the hair club today? I hope it went well and Mia is excited as Sam is to get her new hair..I am bumming a bit..All those hairs I saw on Sam's head are gone..It makes me feel like this treatment is not going to work. We will step it up starting this week. Sam has her competition tomorrow so we will not do a treatment tonight and will wait till Sat and then do the next on on Wed...I hope we will really be able to attack her immune system now. I am so glad school is almost over so I don't have to be concerned with her wearing a wig and feeling bothered by rashes after the treatment. She loves wearing the headbands and frankly is it is so much easier to throw on...I am hoping the new wig will really be like wearing her own hair as they say and she will want to keep it on in between treatments...talk to you soon..Cindy
Thanks!!
I Hope you had a good day too!!!
I am having a hard time with my hands and arms and can't type too well..Doctor doing tests. We go to the derm tomorrow. I will let you know what happens. Did u get an exception fro the kids club? let me know what is up with the wig. Cindy
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Cindy
thanks for your comments....and I am thrilled to see a fellow Brooklynite on the site.Where are you from? I live upstate NY now, but grew up in Windsor Terrace and most of my family is still in Bklyn....small world huh? Your family is beautiful, and Mia is absolutely adorable. Look forward to chatting more.........
Eileen
Your kids are beautiful, must be a blast celebrating halloween in America. My husband has travelled all over the U.S. but has not been to N.Y. yet. We hope to go to the U.S. maybe next year, to travel around. Anyway, my daughter Jennifer is now 8 and she has had Alopecia since she was 2. She wears a Freedom wig with real hair its fantastic. How is your daughter feeling about having Alopecia. Jennifer is now used to it, but we have had some bad times. We are using DCP treatment on her head every week. Over Christmas she had a lot of hair growing, but a couple of months ago it all fell out. So we keep going with the DCP and hope for the best.
Anyway, Sam broke out in another rash 2 days after her Tue application. I called the derm and they saw her yesterday. The doctor said she had good news and bad news for me when she came in. Sam saw the resident first. She said the bad news is she has a rash. The good news is that this good be a good thing. That she believes it is the result of meds. She said her body has been upset and is reacting and that she has seen patients begin regrowth after such a rash. Sam practically has a full body rash. So, now we need to clear up the rash, give her immune system a chance to settle down and in about 2 weeks we will do another application at a lower dose. We cut the dosage in half. If she gets a rash after the next application we will have to stop the treatment. And then you will see me go BATTY.. Cross your fingers that it does not happen..It was good thing I brought her in, and not to her pediatrician. Have a good weekend!!!! GNO today to see thee movie...Cindy
My new book, "If Your Hair Falls Out, Keep Dancing," has a lot of information in it devoted to girls with alopeica. It's a great read and I think you and Mia might find it fun and valuable. For more info, got to my page; there's a link so you can order it, or cut and paste this to go to the web site: www.leslieannbutler.npauthors.com.
Good luck!
LeslieAnn
Did you go to the hair club today? I hope it went well and Mia is excited as Sam is to get her new hair..I am bumming a bit..All those hairs I saw on Sam's head are gone..It makes me feel like this treatment is not going to work. We will step it up starting this week. Sam has her competition tomorrow so we will not do a treatment tonight and will wait till Sat and then do the next on on Wed...I hope we will really be able to attack her immune system now. I am so glad school is almost over so I don't have to be concerned with her wearing a wig and feeling bothered by rashes after the treatment. She loves wearing the headbands and frankly is it is so much easier to throw on...I am hoping the new wig will really be like wearing her own hair as they say and she will want to keep it on in between treatments...talk to you soon..Cindy
Thanks!!
I Hope you had a good day too!!!
I am having a hard time with my hands and arms and can't type too well..Doctor doing tests. We go to the derm tomorrow. I will let you know what happens. Did u get an exception fro the kids club? let me know what is up with the wig. Cindy
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Any mention of products and services on Alopecia World is for informational purposes only; it does not imply a recommendation or endorsement by Alopecia World. Nor should any statement or representation on this site be construed as professional, medical or expert advice, or as pre-screened or endorsed by Alopecia World. Alopecia World is not responsible or liable for any of the views, opinions or conduct, online or offline, of any user or member of Alopecia World.