Replies to This Discussion

Permalink Reply by Megan on August 17, 2008 at 5:56am

hi Bogie,
thanks for taking the time to reply. sounds like you've been on a roller coaster. thankfully, my daughter is such a free spirit and doesn't really seem to care about any of this. me on the other, not doing so good. i just want her to have a normal life. there are already so many challenges in life to deal with that i just fear her awesome personality will be affected as she gets older. will kids make fun of her at school? do i get her a wig? i really don't think she would keep it on, as she didn't care to keep the hats on the first time her hair fell out. any insight you may have would be appreciated.
thanks

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Permalink Reply by Rose Marie' on August 17, 2008 at 1:43am

Hi

I can imagine how you are feeling. This is such a difficult thing to deal with and even though it does become very manageable it takes a little bit to get there sometimes.

My daughter lost her hair at 12 years old AT then grew it back over the next year or so to about 75% regrowth 13-14 she began to shed again but this time went to AU(all body hair, facial hair and head hair gone). She stayed AU until she was about 15 1/2 then started to regrow her hair again. This time she grew back 95% of her hair it stayed around until she was 16 1/2 then she lost it very quickly over a two month period to become AU once again. She is now coming up 18 and has some eyelashes and brows back and some fluff on her head.

My daughter and I made a decision quite a while ago in this difficult journey to make some proactive choices that helped her feel comfortable whether she had her growing bio hair or not. (For us it was a Freedom Wig) . For your little girl it may be a favourite hat or a cute doo rag. What ever helps is ok. Just try and be proactive around dealing with the day to day rather than focusing on whether hair is there or not. Sadly, that is one of the things that you can't control. I've added you as a friend and if I can be of any help please feel free to contact me.

I'm sorry I know very little about treatments as my daughter has not used anything during her journey so far with alopecia. Her hair does what it does by itself.

Rosy

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Permalink Reply by Megan on August 17, 2008 at 6:01am

hi Rose Marie,
thanks for your reply. did your daughter have a difficult time at school? does she do all the activities that she wants to be doing? my daughter will be starting Kindergarten in September. it's a brand new school where she knows no one. if she was going back to her old school i wouldn't be in such a panic, because everyone was used to seeing her bald or with her hats on. i just want to be really careful not to be too sad or devastated in front of her as right now she has so much confidence. i can't imagine her not being the way she is. thanks again and any advice you may have in the future would be appreciated.

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Permalink Reply by Megan on August 17, 2008 at 6:14am

hi Rosy,
i just looked up the freedom wig. looks real. where do you live? do you think a 5 yr old would be ok with a wig on? can you swim with it on? looks like that girl is in a pool in the ad?

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Permalink Reply by Sharon on August 17, 2008 at 3:52am

Hi Megan I really feel for you and totally understand what you are going thru. Our daughter Nicole was 8 when we first noticed her hairloss, the next three years were a roller coaster ride of hair regrowth and shedding. This year after loosing all of her hair basically she decided that she wanted to get a Freedom wig so she had to have the last little bit shaved off. From a parents point of view seeing your child have their hair shaved off was one of the hardest things I have ever done, however in a weird sort of way it was quite a relief as now there is no more waiting and wondering what it will do next.

As far as treatments go we only tried one and it was disgusting with no guarentee that Nicoles hair would grow back. After doing a whole heap of research and talking to others who have had Alopecia we talked to Nicole and decided not to use any treatments, but to let it run it's course.

Megan it is such a scary frustrating and emotional thing you are going thru, what helped me was talking to others who understood, being informed and finding some alternative solutions that would help Nicole get on with life, for awhile it was headbands then scarves then a wig....................now we have just ordered her first pair of eyebrows lol. It might not seem like it but things will get easier for you to cope with..................in the beginning I cried an ocean of tears and was not too good at being brave infront of Nicole I told her that I was so sad that she had developed alopecia. But with time and friends and family things have got better as they will for you. Keep asking questions, there are so many lovely people here willing to share their knowledge. Take care and keep in touch. Luv sharon

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Permalink Reply by Megan on August 17, 2008 at 6:04am

hi Sharon,
thanks for the reply. i hope to one day feel ok and just move on with life. right now, i just go thru the motions until the next day. thanks again.

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Permalink Reply by Terri on August 17, 2008 at 10:20am

Hi Megan:
My daughter was 10 when she lost her hair. It all came out within a matter of weeks. Three months later she lost eyebrows and eyelashes. It was devastating to our whole family. She is now 12 and understands more about AU and is unfortunately becoming withdrawn and has anxiety. She wears a wonderful hair piece that is made with real hair and vacumn sealed, but is now showing signs of not wanting to wear the pieces anymore. She just recently mentioned home schooling for the first time. I hope once she gets back in to school and the swing of the things, she will be okay. We are seeking professional help now also. It is harder on us, the parents I think. We would trade places in a heart beat. When our children hurt, we hurt. I know the pain you are going through.
Terri

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Permalink Reply by Sharon on August 17, 2008 at 1:41pm

Hi Megan we are just waiting for Nicole's first freedom wig to arrive. We decided on this wig for the reasons you mentioned. It is a vacum wig so no one can pull it off, we own a boat and she likes to go on the ski biscuit which she will be able to do with this new wig they are rollercoaster proof so I have heard lol. Rose Marie can let you know but I am sure they do them for little kids. They are made in New Zealand.

And believe me I know what u mean about going thru the motions but it does get easier and you are very lucky to have a child who is ok about alopecia take her lead.............Nicole is also ok and pretty much gets on with life it hasn't stopped her doing much and we encourage her to do so. But that still doesn't mean that you can't grieve it is a natural part for parents whose children have alopecia.

Luv Sharon

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Permalink Reply by Rose Marie' on August 17, 2008 at 4:14pm

Hi Megan

I've answered you on your blog about Freedom.

I can relate to the anxiety you are feeling and wish I could make it easier for you. I cried in front of my daughter about this condition on many occassions. I made her aware that this hurt me, her, her dad and her brother and that she wasn't in this alone. I made her very aware that she was all we ever wanted but alopecia we could have done without and that made us all sad - including her on occasion (she was always a little stronger than me - but I also took the bulls by the horn and emersed myself in this condition so I could be as helpful as possible to her- it helped). It's ok to cry as a family, this is hard.

I think with even five years old education works well. I would be proactive with the school, teacher and classmates about what is happening with her. This will stop silly behaviour. Talking about how everyone is different and that sometimes just like you have brown or blonde hair your little girl sometimes has hair or doesn't. Reinforcing that this doesn't change who she is.

My daughter was a little older when this all happened and she has absolutely loved school. She has participated in everything she loves. (She is more musical than sporty and has travelled the world singing in her school choir and often performs piano recitals - loves her piano as well). I was very proactive through her beginning years at high school but now have very little input on how she handles her alopecia. She wears two wigs one blonde and one dark brown and even though she doesn't advertise the fact that she has alopecia she also doesn't hide it. (The hair colour changes make it all a bit obvious but fashion dictates what hair to wear[certain outfits according to her go with one or other hair colour] - not her alopecia) She feels very comfortable in her school environs. She is off to University next year and I think this will be another learning stage for us and this condition. It never really stops as even though she is comfortable there are always things to discuss and actions to take. She is like every other teenager (a little bit of a pain- no we love her LOL) sometimes confident sometimes scared. Normal sort of things with the added little bonus of having no hair. She does well and I know that your daughter will deal with this over the years to come. Just as you will. I hope that it isn't all seeming to dark at the moment for you - just trust in yourself that this is something that will add to your life in the end. I know it has mine.

Rosy

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Permalink Reply by Megan on August 18, 2008 at 8:16pm

hi Angela,
thanks for the reply. i know what you mean about the hiding and how it just kills the self esteem. i had breast cancer when i was 29 and was so embarassed about being bald. i barely told anyone. got a wig that looked just like my hair. it was crazy how afraid i was of being judged. but now with my precious gift of a daughter--i would give anything for this to be happening to me! she is so incredibly confident and i really must do all i can to preserve this. i knew "normal" wasn't the right word to use when i typed it!! i guess i just want her to be safe and of course deal with life's challenges, but not to be challenged at the age of 5.

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Permalink Reply by Sharon on August 19, 2008 at 4:43am

Hi again Megan it is really hard as a parent to watch our children go thru alopecia and I think that for me I have seen Nicole take her alopecia in her stride and just get on with life. I have done all the what if's and worrying for her I have anticipated how she might feel when in fact she is ok.

I had a conversation with her tonight about how she feels about having Alopecia and she said to me I don't mind I'm ok................of course she doesn't like it when kids are mean.........luckily those moments have been few and far between and we have dealt with them quickly..................tonight has really made me realise that she is ok with what life has thrown at her, we have given her all the support that we can and she has gone with what feels right for her and I have to step back and let her live her life like any other child. Our children are really really strong and will grow up with compassion beyond their years, if your little one is ok hun celebrate that and just keep telling her how beautiful she is, keep building up her precious self esteem so that no matter what the world throws at her she will know that she has a family behind her that are there to support, encourage and love her. You are doing a fantastic job just enjoy your lil one they are so precious.

Take care Luv Sharon

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Permalink Reply by Sharon on August 19, 2008 at 2:19pm

Thanks Angela, you know for the first time in awhile last night I thought to myself it will be ok! I think all alopecians are amazing, I don't want our daughter to miss out on anything in life because of her AA I know as much as this has been and is her journey we as her family and parents have had our own journey, the last three years have been the most frustratingly emotional time of our lives but it has made us so much closer as a family, so for that I am so grateful. Take care Sharon

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