Glad to meet someone with a child so close in age and similar time of onset! Thanks for the welcome

Hi!

Yes, Stockholm is far away from VC. One of of my dream is to go just to VC, cuz its looks really nice. And also other parts of Canada.

Take care, Roger.

Thanks for the comment, yeah I think the shock is starting to wear off now it was hard the first week she had so much hair loss so fast it was just so out of the blue. And then to wait on the blood work to come back to make sure it wasnt cancer made it even harder. But it did ease the fact that it is only AA, she still has hair at this point just thinned quite a bit and a couple of large patches but for a 2 yr old she had long thick hair, so it was just shocking to me but I had her hair cut to her sholders and layered what we could. I think its the sitting and waiting to see whats going to happen is the hardest ya know the not knowing. But no matter what she is BEAUTIFUL......

Hi again.

Yes, Vancouver seems very nice! But so is Stockholm =) specially in the summers. Stockholm is a very old city and very popular for tourists to visit. Lots of americans and japanese people come here. But also lots of europeans.

So are you (your family) planning to go to the NAAF conference in Louisville in june?

Roger.

It will be my first time =) I really looking forward to it.

Thanks for sharing your conversation..It was heartwarming!!
Cindy

Hi Jana,

How is Lynnea's progress been?

Karen

Hi to you as well :)
Thanks for the note. So you live on Van Island? My husband and I just moved to Van a year and a half ago, and so far we love it. It's really nice to meet you. Chat soon, Katie

Hello Janna

I want to say "Thank you" for the comments we both appreciate them, It makes her feel good when someone tells her she is pretty. We want to let you know that your daughters are beautiful as well, Savanna said that Lynnea had a pretty bald head. Just to let you know we did check out the site children with hair loss and filled out an application, Maybe we will hear something soon. I am gald to hear your daughter is doing well with her hair loss, My daughter is my strenght, When i feel overwhelmed with my own issues I just think about her, I then realize if she can live with this condition and continue doing everything she loves and not hide who she is. Nothing i go through is what she lives with on a daily basis, when she was younger it was easier she didnt really think about being bald, since she has started kindergarden and gotten a lil bit older she worries more now, I just try to talk to her,hold her and love on her is all i can do.. I tell her not to worry she has so many firends and family who love her just the way she is. I love my boys, but there is a special place in my heart for my Savanna. I pray for god to give her strenght in her adolescent years, I do believe that will be her tough years,I just hope with the love and support from her family she will be able to make the best decision and live a wonderrful life. Savanna is what makes our family beautiful...

Thanks for the support and good luck with your own precious angel

Maria

I read you post and I wanted to know what supplement are you using. My eight year old developed her first spot and she is being a real trooper about it. I have AU so I am not worried about any treatments anymore. Can you tell me the supplements and see if they help her

Thank you for the information. I went to a health food store and they gave me a supplement with biotene in it and she said that it will promote hair growth and folicilies. I also saw the castol which I am going to purchase. Thank you for the compliment. I know that I can be her role model it is just hard to watch her go through this.

Thanks for calling me beautiful. It is hard to feel that way when you see such a difference in you and everyone else. I have been battling for 14 years and it is still hard to cope with. I just keep thinking it will get better. The health food people said the biotene would help stimulate hair growth and I got liquid cause it goes straight to the blood stream. I wish we could get like a cruise together for everyone to go and bring the kids and families and talk about our experiences.

HI, I would love to speak to you anytime regarding my alopecia. Did your family have a great Easter!!!

Hi, Janna. Since there are a number of you interested in chatting, perhaps it would be a good idea for all of you to put your heads together, work out chat times among yourselves, and let the rest of us know those times. ;-)

Jana, you girls are both so beautiful!! I loved the pics you posted, so sweet!
Sharon

Hey Jana

Can you tell me about that natural supplement you are giving you daughter? The Sterol 117. I saw your husband talk about it on a post..Cindy

Janna, thanks for the info..The sterol does not sound like something that Samantha needs..She does not have the issues your daughter has so I don't think it would do anything for her per say. I guess I just need to be patient with the treatment we are doing now..If we are going to see regrowth it should happen by summer. I wish you daughter lots of luck with regrowth..Let her hair stick like glue..cindy

Janna, Samantha is doing squaric acid immunotherapy (SADBE). The goal of the treatment is confuse her immune system and let hair follicles wake up and grow. Her body needs to produce an allergic reaction in the form of a rash for it to possibly work. First, we had to sensitize her arm in a skin test to see if her body would respond which it did. However, Samantha broke out in blisters 10 days after the skin test and we had to wait almost 2 months to move forward because her arm had to heal. We don't want blisters, but it could happen. Then, when we did the first application in a small area with the doctor, 2 days later her arm got a rash and the spot on her head looked bubbly. With that said we had to wait several weeks for her immune system to calm down before moving on. We did the 2nd treatment again in the office in an even smaller area and then we waited about month before doing another one. Now, we have come to be able to do weekly applications and Samantha is responding appropriately. It does take about 3 months before may see any regrowth. So, I need to be patient and maybe not try all these natural things that i would love to do, because I want this to work and not be disturbed Samantha has been a trooper and has not been bothered by the irritation. If gets itchy for a day post application we put something on it. I did come across a mom who told me her daughter has regrown hair, brows,lashes so I am just trying to stay postivie that Sam will have the same luck. If you want more info on it I can send you links to research. it has like a 70-80% success rate. The question with anything is will it stay once it returns. Our doctor has seen it stay in permanent remission. Samantha is being seen at one of the best Children's Hospitals in the Country so I have to rely on them to know what is best for her. Sorry for my novel. Cindy

You are up earlier or is it late Jana.Funny you sent me this email because I was reading the article I keep handy to keep my spirits high..I am in one of those moods tonight and can't sleep..Today is treatment day and so i look forward to Sam getting home from school. I do it on the weekend so she can carefree with her head if it bothers her. She does not go out without her wig on...Here is my favorite article.http://www.keratin.com/ad/ad049.shtml
Cindy

Hey Janna,

I've been good. I started painting my kitchen today, so I'll let you know how it turns out. I'm glad the babies got to play today (and the blossoming puppy love is just adorable!!) -- we should all take time to do that more often!!!

I added more music onto my playlist; now I have Def Leppard, Bon Jovi, Tina Turner, Shalamar, and Dio -- and I'm still rockin out to it -- I just wish there was a way to put this particular playlist on my iPod though.

I've been on the chat, and it's pretty cool, except you have to know when everyone is on there, and right now considering where everyone is that's been pretty hit or miss. Go on there and look at the comments on the bottom; so far everyone is putting their schedules on there so that a time can be organized for certain rooms.

Hope you have a great Sunday!!!

Nice to meet you! I know... I can't wait for Spring!! Your kids are so cute! :)

Hi Jana,

My daughter's hair fell out when she was about 10 months, she will be 3 in July. I am just starting to reach out to those who have children with the same condition. We too live in Western Canada, we just moved from Vancouver to Calgary.

Let me know if you hear of any conferences, fund raisers, etc. in Western Canada!

Tammy

We like Calgary for different reasons, but do miss the coast. We were just in Vancouver over Easter, and it was cold for the WC.

I will definately let you know of anything of the WC. I am currently trying to work with the NAAF support contacts. Are you going to NAAF conference?

T

Hi Janna,

Your family is beautiful, especially your little one. My youngest is about the same age at 2. My oldest, 4 years old, though is the one with alopecia. I hope you continue to have success with the treatment. I noticed from the pics she has what looks like the hip hat underhair piece? Is this what it is? I was thinking of ordering one and wondered if it was comfortable, natural looking, etc. ? thanks. Lynn

Hi Janna,
Sometimes I think aa is harder for the parents than it is for the kids, don't you? Good luck with the naturopathic remedies.
I've had aa for 30 years and in my new book I talk about kids with aa. (www.leslieannbutler.npauthors.com)
Anyway, I wanted to say hello and hope you are doing well today!
LeslieAnn

Hey Janna,

I thought I would stop by and say hello and see how you and the girls were doing this week. Besides, I had to stop and see the little girl who just may be the happiest-looking baby on Alopecia World!! You know that a picture of Isley and Lynnea are featured on the front page of Alopecia World right? Every time I see that picture of your girls I just smile because Lynnea looks to be just ridiculously happy and that is wonderful to see!!!

You guys continue to rock on!!!

I can't wait to see the new pictures!!! Has Lynnea got any new growth???

Cute new photos.

Roger.

Hi! Im here =) You have so wonderful daughters! I love them if I can say so? Im fine thanks! Im miss my new friends from Louisville (NAAF conference). It was an amazing time for me there. I just start my new job too here in Sweden.

How are you? =)

Hi Janna my daughter has had alopecia for a yr. now shes comfortable most times but wears a hat when shes not so we let her do what she wants but always tell her shes beautiful either way. Things are getting easier but we know challenges will come "if she stil has no growth", at teen yrs. We have an appointment with a leading doctor in alopecia in Sept. From what I've learned expect the unexpected with this so were thinking of seeing a homeopath. By the way my wifes originally from Calgary, great place but Bolton Ontario is home now litlle town north of Toronto...........Thanks for sharing.

Hey there been very busy but looking forward to a appointment we have sept.8th with a derm. at sick kids hospital in Toronto who has done many studies on alopecia. Like we mentioned me and my wife try to keep both my kids off of bad foods like Mcdonalds and try to cook homemade healthy food for them, so after the appointment we will ask to see a allergist or maybe even homeopath route. Her eyebrows are slowly coming back on there own but has had a sort of peach "fuss" all over head for a while and wonder if thats coming but its been awhile, she was at a week long camp and they were great with her but even putting on a T shirt she did it as fast as possible so ahe can put her hat back on "broke my heart" but didn't show her, but around neighbours and family shes out there with no hat and feels comfortable so hopefully if anything else she'll be strong and confident to feel at ease all situations............ will let you know what the specialists says hopefully we'll learn something has come up in treating this or something on a trial basis, hope your summers great will chat soon, all the best to you and your family.

Hi there longtime........... remember quickly I'm the father of a 6yr old girl with alopecia, just visited leading dermatogolist in Toronto on alopecia.Thought you'd like to know what we were told and a procedure she is to undergo every week to have her hair grow back, we have an appointment in Oct. for a consultation on whats involved and so on but she assures us every person who went throught his precedure has had hair grow back.Can't remember the specefic name of procedure but read about it on a site and it involves adminstrationing a manmade rash of sorts to her head and misdirects her amune system away from her head long enough to have her grow hair naturally, its only effects is she might experience a bit of itchyness at times. Along with this procedure we were happy that she wiil do many tests to see if theres anything going on inside her that is effecting her immune system as we are strong believers that the body is reacting this way for a reason. The first thing she tested for ,that we haven't got back test for, is wheat, she was at a conference recently and they found out in some cases wheat especially for children is effecting there ammune system so the catch 22 for us we hope its that simple and shes says if it is we take her off wheat and sub. for spelt and she will grow hair back on her own. If you have questions or would like her name loved to help in any way God Bless Tony from Toronto.

Hi there, was thinking about what you said your daughter might have celic, the blood test was quick for our little girl and results came back negative she's healthy and nothing found.I'm getting back to you ,like you as a parent I hate bringng her to doctors but now that we finished the blood test I'm more at ease knowing shes not celic if she was it would of been easy to get her off wheat as many companies are producing food with spelt insted as wheat apparently is effecting alot of people these days. Again I know test and appointments are hard but as a parent I would at least resolve that avenue knowing either way if she was or not because we learned before she was tested that wheat could of been effecting her ammune system as well as damaging her stomach by not allowing her to absorb proper nutriunts inturn effecting her alopecia and ammune system. This might sound strange but I was actually thinking if we knew it was wheat we'd have closure, take her off wheat and the doctors says no treatment would be necessary and her hair would grow back. Again we are currently see a leading dermotologist at sick kids who has and still going through extensive research with other doctors around the world. It killed me to see her blood being taken but like I said at least we know shes fine.

Thats so nice.. a beautiful picture of your daughter. I have two kids 9 yrs boy and now a 22 month old joanna. I notice when 16 mo she loosing her hair, before doctor said its just a cycle wait for 3 months. My dj keep loosing her hair. She just diagnos 20 month old. Dr, gave her cream for 3 weeks didnt change . Im so worried its so hard for me to accept it, people think my dj on tretment . I need to explain to them..this and that ,and people sometimes starring with my dj to think she's sick.I m going to ask my Dr. about naturopath

Hi. Thanks so much for sharing your little ones. It brought tears to my eyes when reading your blog. You have two very beautiful special gifts that God has blessed you with. Enjoy each and every moment for you blink and they are grown. I have two boys, 17 a Senior in high school, and a 21 year old with a 4 year old son. Every day now, I miss the years when they were little.
Bless you and your family!

HI Janna, newer to the site and came across your page. Are you still using a naturopath? If so what are you using? We have recently found out our daughter (8) has AA and are trying to find our way thru this new experience. We live in Edmonton but are from the coast. Your photos are beautiful and your daughters are beautiful.
Karen

Hi, from all that you have done I have some new stuff to ask about when we see our DR. soon. Thanks, all the info we can get is great.
Karen

Hey there! Where abouts do you live? My 8 year old daughter has Alopecia. She currently has lost about 70 % of her hair but is losing more daily. I find it harder than she does thats for sure! Anyways, if you are not close to me but want to make pen pals with out daughters feel free to contact me!

I hear ya! I look forward to being friends with you too. Life is a bit topsy turvy right now and I don't log on all the time either. but I do check in as much as I can.

Hey Janna!

How are Lynnea and Isley?? I haven't had much of a chance to sign on and say hello lately, and for that I apologize -- I definitely think of you and your babies every time I sign on though!! I moved back home to Nashville from Memphis a few months ago, and if you check out my blogs, you'll see that I've been VERY busy!!! At any rate, just wanted to say hello to you! Give your girls a big hug and a kiss for me!

YoKasta

Hello my name is chrisitna and this is the 2nd time in my life i have been diagnosed with AAi am yet again devastated. I did not ever think my Aa would come back but i am even more scared now..see i had a daughter a year ago and i never knew that AA could be passed from mother to child of course as a parent you try and prevent everything bad from happening to your child but this i can't prevent..i am soo scared she will have to face what i am facing and have faced i nthe past. So my ? is does anyone in your family have this disorder or do you know the chance of it being pased from mom to daughter... i have an appt. with a dermotologist to ask all these ?'s that have been driving me crazy since i noticed my first spot...but as i am sure you know getting in to see a dermotologist is a waitng game so if there is any info you are willing to share about symptoms or signs tests etc...that could help me or really any info at this point would be a blessing. i feel childish feeling the way i do when i see your young daughter looking so happy and beautiful i think if this young child has no porblem being bald why should I. well if you could help with any info it would be greatly appreciated. Thank you for your time and my god give your family the strangth it needs to face this god bless you and your family.:)

Hi Janna, we talked back in Feb. I took your advise and found a natropath. My 8yr daughter is lacking iodine and her connective tissues are weak. We started on vegetable iodine and already see improvement in her overall health. We haven't seen any signs of hair growth but it may take some time. Thanks again for the advise.

Hey Janna,

I am SO excited to hear about the baby!!! You definitely HAVE been busy since we talked last! And I am even more excited to hear about Lynnea's hair -- you have to send a picture of the "Friar Tuck" look -- as cute as she is, I'm sure she's pulling it off! Glad to hear Isley's doing well too -- have they helped you pick out baby names??

I haven't been on in a while either; my mother had a stroke in March and I've been helping her out quite a bit with her recovery. I will be blogging a bit more now that I have my mornings free again -- so glad to hear from you!

All the best to you and your babies!

YoKasta

thank you for taking the timeto respond to my questions. yeah i heard the same thing form my dermo. i am just so scared they will have alopecia i guess i just worry to much but i guess that comes with the mommy job. well i hope if they ever do show signs i can hold myself together to get them tru it b/c when it happened to me twice now i was devastaed both times. i also hope they will be as happy as your little girl and copes as well as she has. well thanks again and please tell your daugheter i think she is beautiul and her smile is just gorgeous!! thanks agin. :)

Hey Janna!

How are my favorite little girls on Alopecia World doing?? By now you should have had the new baby; how is he/she doing? What did you name him/her? As long as he's healthy, I'm overjoyed for you and your family!

If I don't hear from you soon, Merry Christmas and Happy Boxing Day! BTW, can somebody explain to me just what the hell Boxing Day is???

YoKasta

I am so glad to hear that your baby is doing wonderful! I'm also glad to see that Nnea's hair is still growing too! I will be doing some serious blogging this weekend catching everyone up on what is going on in my life, so please stay tuned!

Tell Graeme I am sorry to hear of him losing his beloved father; I lost my own father 8 years ago and there isn't a day that goes by that I don't think of him -- he was my biggest supporter growing up and really was my bestest friend in the world -- I sometimes feel like every day that he's been gone has been really hard, and although you never get used to the idea of someone that close to you being gone, it does get easier knowing that he isn't suffering or sick or hurting in any way any more!

Please don't be a stranger; and Happy Holidays!

thank you soo much :D <3

Merry Christmas to you too , i hope you and your family have a wonderful holiday !

xoxo , Essence .

Hey there Janna!

How are Graeme and the girls doing?? I was outside on this lovely spring day here in TN and thought about you and the girls and just wanted to say hello! Hope all is well!

Hugs, YoKasta

Hi Janna!!

Just dropping by to say hello to you, Graeme, Lynnea, Isley, and baby Fiona!! Hope things are going well for you guys!! Give my favorite girls lots of hugs and kisses for me -- perhaps one day we will finally meet at the NAAF Conference??? :)

YoKasta

Hey Janna!

SO glad to hear from you and glad to see that Lynnea, Isley, and Fiona are doing great!

Hope you're enjoying the winter -- how is Nnea's hair doing?

Hugs, YoKasta