Comment

Comment by dalit samuel on July 15, 2009 at 1:49am

Hi everyone,
I am a mother to a 16 years old girl who has Alopecia Universalis.
Our story began when my daughter was only 2 years old, her whole body hair fell off. Through the years we have experienced various attempts to recover the hair, Chinese medicine, medicine from Tibet, homeopathy and more and more, in our home country Israel and abroad. We made sure not to treat our daughter with steroids since we have witnessed their effect on other children and we saw that when the treatment stopped the hair fell off again.
Over the years a part of my daughter’s hair grew back, but there were parts where the hair never grew again. At the age of about 10 we stopped all the treatments since we saw that her condition is static.
At the age of 15 we heard about Shmuel Gonen from our neighbor initiated treatment to see if it is possible to “wake up” the areas where hair didn’t grow since the age of two (14 years). Shmuel accepted us for treatment with his peace and quite temper, no promises but with a lot of empathy.
For our great joy indeed the effect of the preparation was helpful and little by little we could see growth of new hair in areas where there was once a smooth scalp. In every meeting we have seen the dedication and the true eagerness to help, the expertise along with his modesty.
I wanted to share everyone with my story since it is important for me that everyone will know that there is another option to help people with Alopecia.
Even though my daughter fully lived her life all of the period, dancing, instructing other kids, full of confidence and socially active, I think that she always dreamed of a hair like all of her friends, wanted to remove the hat (by the way, since she initiated the treatment she doesn’t go with hat anymore), so if my story would be helpful to some other people I will be happy.
With honor,
Dalit.

Comment by sgomez on July 8, 2009 at 11:17pm

Hi all! I myself am not a parent of a child w/ alopecia, I was the child. I am sending out this posting to this group on behalf of a mom who I have just met over the phone. Her 6 year old daughter has recently been diagnosed with alopecia, and mom and grandma are having a really hard time dealing with it. They had never even heard of alopecia proir to the dx. She has recently joined alopecia world, and I am here to ask other parents to look her up and lend thier support and friendship. She has joined under the name, Brandy googe. Thank you all so much! I hope she can find a friend in you, and maybe her day will be a little less burdened knowing that there is someone else in this world that is going through it too.

Comment by Lillian (Tracy-mom) on July 6, 2009 at 12:16am

Monique
Nobody knows what causes autoimmune disorders. Nobody. Some people have suggested that there may be link to gluten intolerance and autoimmune disorders in some people. But I think maybe everyone has different triggers. Who knows. I know it's overwelming and stressfull. My daughter is 8 and tolerated alot in her short life with allergies and asthma and now this AA. Now we are just doing supplements, food avoidance for the foods she sensitive and another blood draw after a few months to see if we are getting anywhere. My daughter never had any symptoms with her stomach either but I know from a GI test that her colon is inflamed and her mucusal layer in her intestants are depleted. We are focusing on fixing that in hopes that her immune system will stop the attack. I think that is a pretty good theory for us and I feel like it will help. By the way, we are seeing a naturopathic doctor not a western doctor. They treat the whole person not the symptom. Good luck with your daughter.

Tracy

Comment by Monique (Mom) on July 5, 2009 at 9:56am

My question is what are the symptoms of Celiac disease? Is there a lot of digest/bowel issues? How would I know? My baby really has no issues with bowel problems. She eats everything and has no other concerns other than hair loss. She is constipated a lot though...hehe. But, that is not a sign of celiac disease. My doc. at Johns Hopkins said it is not an alergy related concern...for me that is. Should I still research the thought? My only concern is that she has no other symptoms and from hearing about Celiac there are a lot of bowel issues. I just don't want to put my 15month old through unnecessary tests.

Comment by Lillian (Tracy-mom) on July 5, 2009 at 2:05am

We didn't do the test for Celiac Disease but we did do the ALCAT a food intolerance blood test. Lillian has a severe intolerance to Gliadin a component of Gluten along with a whole host of other foods. After a few months on an food avoidance diet we will retest to see if some more foods can be tolerated.

I have heard that Gluten intolerance and Celiacs disease is severely undiagnosed with alot of false negatives. It doesn't give me much faith in the medical profession. My own daughter has been under the care of an allergist for the past 8 years since she was 9 months old and nobody picked up on her food sensitivities that didn't generate a histamine response. Eggs and peas were the only food identified by the allergist because they are classic allergies with the histamine response. Good luck

Comment by Angie, Gracie's mom on July 3, 2009 at 10:11pm

Celiac is also a concern for Gracie. We are currently working w/ a Pediatric GI specalist, and there are diagnostic tests for Celiac. I have family members w/ it as well. It is a life altering disease due to the extremely restrictive diet. Our specialist really recommends getting a firm dx before doing the diet. You cannot be tested for it if you are a gluten free. I too have wondered about a connection. We will know more as we continue our work w/ the specialist and anyone can contact me if they have questions or want an update on what we find out in the coming months. We will likely do a scope w/ her as that is the most diffinative dx.

Comment by Monique (Mom) on June 30, 2009 at 8:03pm

That is so interesting. I have thought about Celiac Disease before and wondered this for my Gabby. I am going to research this disease a bit and see if hair loss has a connection. Have you heard of such a thing? Only thing I know about it is that Elizabeth Hasslebeck on the show The View has it.
Thanks for the advice and update.

Comment by Kori Miller on June 30, 2009 at 12:33am

Folks - just wanted to let you know the success we are having with L-Glutamine and Biotin. Check out Susan's (from Webster NY) comments because she has done extensive research on the gut and celiac disease connections to Alopecia. I believe that my daughter Hannah's Alopecia is related to problems with her digestive system and perhaps a food allergy/intolerance to gluten (Celiac Disease) and although I am getting no medical support for my theory I feel that what we have been doing to date has helped with the regrowth of Hannah's eyebrows. It's slow but the regrowth is definitely there and it seems that the scalp hair loss is normalized. For all who are interested this is what we are doing daily but beware that this is my own diagnosis and not sanctioned by a medical doctor:
- 500 mcg of Biotin
- application of essential oils (I can provide the recipe but you can also Google it)
- nightly application of Topicort, a prescription topical steriod
- adult dose of a product called IntestiNew manufactured by Renew Life which contains 5000 mg of L-Glutamine

This has certainly helped with Hannah's cramping, bloating and constipation and again I feel has contributed to the regrowth of her eyebrows (albeit slow). We are going to a herbalist on Wednesday and I hope to get more suggestions on additional mineral supplements. We have to wait before we can start a gluten free diet because Hannah needs to be tested again but it's our next step.

I know it's extremely difficult to contemplate a life without wheat however based on what I've read lately it may prevent serious problems including cancer and other auto-immune diseases later in life. There is a very good book on the subject of Celiac Disease written by Peter H. R. Green.

Comment by Nancy Schmelzer on June 29, 2009 at 6:31pm

Has anyone used Latisse for eyelash loss. My eyedoctor is recommending it for Lauren to try as she is loosing them fast. I would love to hear what people have to say. Thanks for your help.
Nancy

Comment by Mike on June 18, 2009 at 12:14am

Christine, Alopecia is very rare, there are only a few children in our area of several hundred thousand people. Our school, which has had thousands of children over the years had never heard of it. So that combined with not everyone would be aware of this website is probably why no one has turned up.

There may also be a local support group but we found, again, that so few people have it our area did not have enough people to support a very active group.

• ‹ Previous
• 1
• …
• 22
• 23
• 24
• 25
• 26
• …
• 32
• Next ›
• Page