Hello!
I know it has been a while and we havent been on to much, this summer has been crazy hectic! How have you both been? How was your summer? Is Alyssa still in treatment? Kira still says she doenst want to try anything but the natural and shampoos, she is afraid of the needles and reactions the creams may cause. She is still using the Nutri-ox shampoo, conditioner and drops from sally's and after 3 months it has helped with some baby hairs although she has continued to loose other hair. She stays at about 70% loss right now. We have recently noticed her arm and leg hair has begun falling out, and doenst have much left. She say cool! No shaving when I am older LOL.... I hope with school starting in a few days it doesnt become more rapid. SHe hasnt been wearing her scarves because she says she doesnt care, so I am very proud of her:)
Tell me how you all are and I will talk to you soon!
Love Kirsty (mom) and Kira

Hi again! The shampoo is called Nutri-ox ( I think LOL) SO far there are only about 8 baby hairs we have found after 2 months.. but so far her hair loss has become more rapid. We have been fortunalte that her hair loss started almost like a all around head band.. She has about 2 or 3 inches all around her head, and now about 3 large spots on the top of her head. She still has her bangs, but the smaller spots are now wide spread, but her hair is fair so it doesnt look as bad as it is.. Are the shots painful? How does she handle it and how many do they do?

Hi Barbara!
Kira really looks forward to hearing from Alyssa, She will be writing back when she gets home today, she didn't get the chance yesterday :) In the beginning, she cried alot, as did I Tho not where she could see, Then she seemed to accept it and has done so much to make sure her school mates know what it is and accept her. At first she wanted no treatment, this is her she said, and I agreed, it is all so invasive for our little ones. After reading on it all I was so afraid of the side effects. Not to mention we have to drive 2 hours to the nearest real "city" to see a specialist. We will be doing that this summer Kira has agreed to atleast talk to someone, about the injections. We have talked to a few adults that had a spot or two and it worked for them, but with the amount of hair loss Kira has, unless they are going to put her asleep, thats ALOT of shots, and she is terrified, as would I be. Its funny, as a parent you are looked to to fix so many "owies" but this...it kills me that I can't fix this and all we can do is try to see what works through trail and error. Right now she is usung a shampoo conditioner and drops from Sallys , There is something called Nioxin, that is used and in some after 8 to 12 weeks shows great results, and this other one has a similar name and is a few dollars cheaper,( but I can't find the nioxin,) and they have mostly natural ingredients verses the Rogaine treatments. We are on the 8th week and should start seeing results I hope soon, if not, well we tried and she smells lovley like mint LOL. Anyway, I will send you the name as soon as I get my lazy bum up and off this computer, I am taking a break from my daily cleaning and packing for a trip to Tennessee this weekend for a week. AaHHhh time to relax finally LOL! Have Alyssa Look for Kiras email soon!
Kirsty

HERE WHERE I LIVE THEY DONT SEEM TO CARE OLIVIAS MOTHER SANDY ON ALOPECIA WORLD HELPD US AND GET THE DVD AND I TOOK IT TO THE SCHOOL AND THE PRINCIPAL TOLD ME THAT IT WASNT IN HIS CARIKALUM TO SHOW IT SO SANDY CONTACTED THE SUPERINTENDENT AND HE TOLD HER THE SAME THING SO SHE STARTD CALLING NEWS STATIONS AND TEN WHEN THE NEWS CONTACTED THE SCHOOL THEY SHOWED IT IN HEALTH CLASS.....AND THE COUNSLER AND ANOTHER WOMAN AT MY SONS SCHOOL R THE ONLY ONES HERE THEY WANT TO HELP ...MY BESTFRIENDS NIECE JUST FOUND OUT SHE HAD IT ALSO SHE IS 16 HER NAME IS ALSO JASMINE. THANX 4 UR ADVICE GOD WILL HELP US GET THROUGH IT AND ALL OF U HOW IS ALYSSA

NO WE HAVNT TRIED ANY TREATMENTS JUST THE CREAM SHES ON SO MANY MEDS NOW ASTHMA THYROID AND SHE CANT USE THE BATHRM RIGHT DOES THE HAIR CMEBCK WTH THE TREATMENTS.......I HOPE SHE FEELS OKAY

HEY HOW IS ALYSSA I HOPE DOING WELL WANTED TO SAY HII

Hi Alyssa, your daughter sounds amazing and alot like my daughter. Sam has been doing squaric acid treatments for two years and it has made her hair grow back. She still has some baldness at the nape of her neck and no lashes. Her brows are coming in now. She has not expressed the loss yet after regrowth and I hope we won't have to. Good luck with the shots. Sam won't have anything to do with them. Thank goodness our kids are so resilient and strong. Feel free to have Barbara write her. She'd love that Cindy

Hi Alyssa,

Welcome to AW. I am mom to an 8 yr old with this condition. How is your daughter doing?
Cindy

Hi Barbara,

How are you and your daughter both doing? The first 2 weeks of our AA I was taking Stress supplement and Magnesium Drink which helped me keep it together for my daughter. If you are having a hard time coping, try it out. It definitely helped me.

We saw our ND and got the results of Lillian's GI and ALCAT allergy test. It showed that she was extremely low in her Total Intestinal SIgA (43 with normal being 400-880). This basically shows that she has a high allergy reactivity going on in her gut that has depleted the SIgA. This is the first line of defense for the immune system. When this is deplete apparently stuff gets in that's not supposed to. She also has elevated numbers in intestinal Lysozyme and Alpha Anti-Chymotrypsin which basically means that she has inflammation in her Intestines and colon. She was also abnormally low in Chymotrypsin which is a marker enzyme for pancreatic exocrine output.

All this GI testing basically means that she has had long term exposure to food that she is allergic and or sensitive to that has depleted her defenses in her gut and caused inflamation. She also has a leaky gut.

Her allergy tests showed a list of 5 severe Intolerances, 21 moderate intolerances, and 42 mild intolerances. She is also Gluten and Gliadin intolerant. What was interesting is that the food that she test allergic to previously were in her safe foods list. Apparently there is a difference between classic allergic response and food sensitivity. Anyway we still have to avoid her egg, peas, and cantelope even though they are in her safe food group.

For the next few months, she will be on a diet plan that eliminates all severe and moderate intolerance with mild intolerance foods eaten a maximum of 1 day per week. She was also given a whole host of supplement to fix her gut and improve her skin and allergy response. It's going to be a challenge feeding her for awhile, but she has been very cooperative so far. I don't think I could have done this diet a year ago.

The doctor feels that when her gut is healed and allergens are no longer getting into her system that her immune system will no longer attack her hair. This will be a several month process I think, but in the end I'm hopeful that this will improve her overall health even if her hair falls out anyway.

Tracy